 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Cancer / January 2006Newly Diagnosed with Nasopharynx Cancer
Hello everybody, I was diagnosed this past Friday with nasopharynx cancer. Four days earlier, I had a neck mass biopsy. My surgeon was expecting lymphoma but it came back with nasopharynx cancer. He told me that my prognosis was "good" and that I had a difficult few months ahead of me. However, at the end of it, I should be all right with little to no chance of relapse. At first, I was relieved. I was expecting an indolent lymphoma diagnosis (neck mass, clear chest x-ray, no other symptoms) so I was mentally prepared for years and years of "watch and worry". To be told that I would have everything resolved in a matter of months sounded great. Then I got home and read all about nasopharynx cancer. While my doctor was right about the "good" prognosis, the likely long-term side effects (no saliva, no taste, difficulty eating), the possible complications (deafness, blindness) and the prospects of feeding tubes, mediports and having my teeth removed made "watch and worry" seem as appealing as a walk in the park. I have a hundred questions that I want to ask right now but I'll limit myself just to two: 1. After a dental checkup in August, my dentist told me that I needed a filling for a very, very small cavity on one of my molars. As I engaged the medical system on my neck mass a couple of weeks later, I never got around to having the filling done. Will I have to get the tooth removed now as I face certain radiotherapy or will the dental oncologist be willing to fill it for me? If possible, I would like to keep all of my teeth since I've invested a small fortune in them over the years. Should I have my own dentist do the filling before I see the dental oncologist so that he or she won't have an excuse to pull it out? 2. I live in Canada (Saskatchewan) and I'm wondering what options I have if I ever want a second opinion. Will a second opinion be covered by medicare or am I just going to have to take what the system gives me? I'm not saying that I want a second opinion right now, I'm just wondering if the option is available to me. Anyone out there from Canada who has dealt with the system? I don't know what stage of NPC I have but I imagine it's fairly advanced since I have two posterior lymph node metatases on the left side of my neck (one around 2.5 cm and the other, just under the first, is <1 cm). I'm hoping the primary tumour is contained within my nasopharynx and that I have no distant metatases. The neck mass is my only symptom. I feel fine otherwise. Looking back, there were a few times where I had blood mixed with snot when I blew my nose. As it happened rarely, I didn't think anything of it. If I only knew ... Thanks in advance to anyone who replies. I'm hoping this group will be a source of support throughout my battle with my disease. > Hello everybody, > [quoted text clipped - 50 lines] > Thanks in advance to anyone who replies. I'm hoping this group will be > a source of support throughout my battle with my disease. NPC is a potentially curable cancer. But if not taken seriously and treated properly, it kills people. Even if treated properly it still kills some people The curative treatment is radiotherapy, possibly with chemotherapy. There are side-effects to treatment, but modern treatment techniques reduce those side effects significantly. People with good teeth before treatment keep them after treatment if they look after them. Here on Vancouver Island, our gastrostomy feeding tube rate is less than 1% The radiation oncologists in Sask are very good, and whichever one you see will not mind arranging a second opinion in the slightest. You might want to ask the rad onc about whether IMRT is available. Don't get your definitive advice about NPC from surgeons, medical oncologists or anyone else. The only curative treatment is radiotherapy, and you need a radiation oncologist > The radiation oncologists in Sask are very good, and whichever one you see > will not mind arranging a second opinion in the slightest. You might want to [quoted text clipped - 3 lines] > oncologists or anyone else. The only curative treatment is radiotherapy, and > you need a radiation oncologist Varian Clinac 2100C with IMRT capability.in both Regina and Saskatoon. J > NPC is a potentially curable cancer. But if not taken seriously and > treated properly, it kills people. Even if treated properly it still kills > some people > The curative treatment is radiotherapy, possibly with chemotherapy. Nicely put Steph. The father of one of my cow-orkers discovered his NPT at the same time as mine, but he was later to the treatment and did not make it. I can not stress to people enough. Don't wait. See your doctor at the first hint. > There are side-effects to treatment, but modern treatment techniques > reduce those side effects significantly. > People with good teeth before treatment keep them after treatment if they > look after them. Lets hear it for IMRT, Radio-Oncs who make good treatment plans and amifostine for those of us who need it. The very first thing I was told was the only really bad medical advice I was given - "Go to your family Dentist and have all your teeth pulled." Thank goodness I didn't listen to her and got a second opinion. > Here on Vancouver Island, our gastrostomy feeding tube rate is less than > 1% Now I feel really special. I'm a one percenter. But the truth is, that the PEG tube wasn't to be feared. It protected my throat as well as got me better nutrition than I would have fed myself left to my own devices. The only bad part was removing the tube and that wasn't too bad. I was almost sorry to see it go. > Don't get your definitive advice about NPC from surgeons, medical > oncologists or anyone else. The only curative treatment is radiotherapy, > and you need a radiation oncologist Isn't the real purpose of chemo for those of us with NPT to suppress the establishment of metasteses? The radiation does all the real work. >> NPC is a potentially curable cancer. But if not taken seriously and >> treated properly, it kills people. Even if treated properly it still [quoted text clipped - 35 lines] > Isn't the real purpose of chemo for those of us with NPT to suppress the > establishment of metasteses? The radiation does all the real work. Chemo helps - a bit - patients with neck nodes, because it does seem to reduce the risk of distant mets - a bit. But if you don't cure the local disease, you don't cure the disease, and the only thing which can cure the local disease is rads >> NPC is a potentially curable cancer. But if not taken seriously and >> treated properly, it kills people. Even if treated properly it still [quoted text clipped - 6 lines] > it. I can not stress to people enough. Don't wait. See your doctor at the > first hint. Can you tell more details about him, Chris? It's amazing that you -an NPC patient, knew someone with the NPC - it's so rare around. How long he was later? How old was he? How his illness developed?  SignatureRegards, Araik Margarian. http://journals.aol.com/aramargar1/MyAmericanDream/ >> Nicely put Steph. The father of one of my cow-orkers discovered his NPT >> at the same time as mine, but he was later to the treatment and did not [quoted text clipped - 6 lines] > How old was he? How his illness developed? > Matt's father worked for one of our time-and-material contractors as a carpenter and so I actually knew him. I did not see him again after we each got cancer. (I never knew except as Matt's father) He was someone you would expect to get lung cancer -- chain smoking holding the cigarettes backwards in his hand to get every last molecule of evil out of them. Although we started treatments about the same time, his was fully involved before he sought treatment. He denied the problem even though he was constantly having troubles. My understanding is his NPT was Naso, pharnyx and throat by the time he started. He was always skinny - 5' 11" and 140 pounds {although he always seemed taller than me I guess because he was skinny} That's really all I know except that he died about the same time I finished radiation. > I was diagnosed this past Friday with nasopharynx cancer. Four days > earlier, I had a neck mass biopsy. My surgeon was expecting lymphoma [quoted text clipped - 32 lines] > Thanks in advance to anyone who replies. I'm hoping this group will be > a source of support throughout my battle with my disease. Hello and welcome CHY, I see that Steph's replied to you. He's a rad onc out in BC. You're in luck. There's 3 posters who've been through similar here, one just started treatment and 2 over the hump (treatment earlier this year). So if you've downloaded and have saved posts, look for posts by Chris Ness and clifto. Haven't heard any serious complaints so far with Araik, but he's just started and side effects, if any, start kicking in around 2 weeks after the first (or end - I always forget which or the rad onc will tell you) of treatment. Hopefully they'll be around to give you some tips although Chris has been travelling due to a family emergency and with Christmas coming....(not sure who'll be here as often or less frequently for the next few weeks). You'll be putting Sask on the map here; I don't recall anyone recently being from there and I've always had problems finding info about healthcare in Sask (on the 'net). Looks to me (on searching ) that both Saskatoon and Regina have IMRT and have for at least a few years. The question in my mind would be wait lists, so what's the next step that they told you? If it's seeing an oncologist, you might want to get on the phone and make sure that an appointment has been set up with radiation, as well. If clifto and Chris Ness don't ring in within the next few days, remind me and I'll give you tips on how to search the archives for their posts or you can try http://groups-beta.google.com/advanced_search?q=&\ This newsgroup, in the newsgroup box sorted by date, with chris and clifto in the "with at least one of the words" box. If you give it date range Oct 1/2005 to now, you should capture most of the tips they gave Araik. Talk to us anytime. We'll be here for you, J Hi J, Thanks for the warm welcome. Much appreciated. > I see that Steph's replied to you. He's a rad onc out in BC. > You're in luck. There's 3 posters who've been through similar here, one [quoted text clipped - 7 lines] > Christmas coming....(not sure who'll be here as often or less frequently > for the next few weeks). I'm very glad to hear that there are fellow patients here as well as a cancer professional -- especially a professional from Canada. > You'll be putting Sask on the map here; I don't recall anyone recently > being from there and I've always had problems finding info about healthcare > in Sask (on the 'net). Our system is good, professional and modern but slow. I was diagnosed with an inguinal hernia in August 2000 and didn't get surgery for it until June 2002. I saw my GP about my neck mass on September 9th this year and got my cancer diagnosis exactly three months later: December 9th. It seems to me that I could have gotten a diagnosis in a matter of days if it weren't for the wait lists (ultrasound, neck CT, surgeon). In October, my GP booked an ENT appointment for me. The date I got was January 4th, 2006. I admit that I compounded the problem by now seeing a doctor right away when I discovered the neck mass. I first noticed the mass in April. However, I had cervical lymph node enlargement in the spot before (actually saw a doctor about it once in 1997) so I wrote it off as being due to infection. Prior to first noticing the lump, I had just finished 10-days of amoxycillin for a throat infection so I figured that's where it came from. I also read that lymph nodes sometimes take months to return to normal. Given that I felt fine and had prior experience with lymph node enlargement due to infection, I didn't see a doctor right away. When it didn't go away by the end of summer, I started getting concerned. > Looks to me (on searching ) that both Saskatoon and Regina have IMRT and > have for at least a few years. The question in my mind would be wait lists, > so what's the next step that they told you? If it's seeing an oncologist, > you might want to get on the phone and make sure that an appointment has > been set up with radiation, as well. The next step is an endoscopic examination under general anaesthesia to find the exact location of the tumour and to see if it has spread down my mouth and throat. No mention of an oncologist but he did say that the Saskatoon Cancer Centre will be contacting me shortly. Again, thanks for the warm welcome J. > > I see that Steph's replied to you. He's a rad onc out in BC. > > You're in luck. There's 3 posters who've been through similar here, one [quoted text clipped - 41 lines] > my mouth and throat. No mention of an oncologist but he did say that > the Saskatoon Cancer Centre will be contacting me shortly. Thanks for explaining. Looks like the endoscope will be over with before Christmas and you can enjoy (hopefuly) wonderful Christmas meals and then on to the mask fitting and treatments shortly afterwards. J I posted here briefly back in May but have been lurking since then and have found great info and sites to research. My mom was diagnosed with nasophyrnx cancer back in May. She under went a combination of daily radiation for 8 weeks and 7 chemo treatments each 21 says apart. The follow up scope and CT scan in October both produced good results and all drs were please. Since then she has had alot of problems... Namely the lack of saliva and no appitite. The last two weeks she had been very confused and weak. She was admitted into the hosptial thurdays night with hyponatrium ( low sodium) Probably from excessive water intake since her mouth is so dry. The cancer is gone but the healing process is worse than the treatments themself. > I posted here briefly back in May but have been lurking since then and > have found great info and sites to research. [quoted text clipped - 9 lines] > The cancer is gone but the healing process is worse than the > treatments themself. Hyponatremia Yes, apparently even in a healthy population, that can happen. I noticed, from time to time, a public service announcement running on TV. Apparently dieters (who are told to drink "lots" of water), were drinking too much and getting themselves in trouble. Hopefully, now that your mother's in hospital, they'll get things sorted and a dietician help her out so it doesn't happen again and hopefully from herein, you'll see gradual improvement. Hugs J >> The last two weeks she had been very confused and weak. She was >> admitted into the hosptial thurdays night with hyponatrium ( low sodium) [quoted text clipped - 5 lines] > Apparently dieters (who are told to drink "lots" of water), were drinking > too much and getting themselves in trouble. I never thought of that. I had slight hyponatremia for a while and never associated it with the amount of water I drink to help the dry throat. Not that I have a problem putting lots of salt on my food, you understand. :) SignatureIf John McCain gets the 2008 Republican Presidential nomination, my vote for President will be a write-in for Jiang Zemin. > Then I got home and read all about nasopharynx cancer. While my doctor > was right about the "good" prognosis, the likely long-term side effects > (no saliva, no taste, difficulty eating), the possible complications > (deafness, blindness) and the prospects of feeding tubes, mediports and > having my teeth removed made "watch and worry" seem as appealing as a > walk in the park. My cancer was lower in the throat, on the epiglottis. Treatment was similar except for where they pointed the radiation. I completed my treatment in late August. I had all the side effects you mention; I still don't have much in the way of saliva, but it's coming back little by little. I should mention here that the reason we caught this early is that I've had dry-throat problems since January 2004; the CA itself had no symptoms. Taste is recovering, not fully back but I can recognize a lot of foods now by taste. The difficulty eating goes away gradually; at first a lot of the difficulty is not being able to taste stuff and not having saliva to help it slide down. I had had a biopsy of the epiglottis that further impeded swallowing; I had to stick to very small pieces of solids, still can't swallow a good-sized bite of steak like I used to, but you won't have the epiglottis problem from the sound of it. Any chance of deafness or blindness is probably going to depend on how they have to aim the radiation beams. My dentist wanted to remove all my teeth before the radiation started. I overruled that. Went back to him about a week ago for my first checkup after treatment; my use of bottled water left me without fluoridated water, which I should have remembered gets me lots of cavities, but on the whole my teeth are pretty sound. > Should I have my own dentist do the filling before I see > the dental oncologist so that he or she won't have an excuse to pull it > out? That would be my pick. > [snip] > I don't know what stage of NPC I have but I imagine it's fairly > advanced since I have two posterior lymph node metatases on the left > side of my neck (one around 2.5 cm and the other, just under the first, > is <1 cm). I'm hoping the primary tumour is contained within my > nasopharynx and that I have no distant metatases. I'm guessing stage three, which sounds worse than it may actually be. They caught me early and I was still stage three; it jumps immediately to stage three once a lymph node gets involved, even just one node (which was the case with me). SignatureIf John McCain gets the 2008 Republican Presidential nomination, my vote for President will be a write-in for Jiang Zemin. Hello again, Thanks to everyone who has responded thus far. I'm very happy to receive such support in so short a time. I hope this camaraderie will be a source of strength in the difficult months ahead. I'm especially gratified to see that there are at least three fellow head and neck cancer patients as well as a radiation oncologist (a Canadian one to boot) who are regular posters on this board. An oasis of good news in the desert of doom and gloom that I've been going through since my diagnosis. clifto, steph, I hope I don't become a pain in the a.s for you guys after a while. Now for some more questions: > Any chance of deafness or blindness is probably going to depend on > how they have to aim the radiation beams. I don't have any vision or hearing problems so I'm hopeful that deafness/blindness will be a remote possibility as the tumour doesn't seem to be effecting my cranial nerves. However, I'm fairly certain that my cancer is in the nasopharynx itself and, from my understanding, there are a lot of structures in the area. Anyway, I'm adopting an "one step at a time" philosophy so I'm trying not to worry about it until it becomes an issue. I would, however, like to learn more about the IMRT process. I know that I'll be getting RT on my primary (after they find the exact location) and on the two neck nodes on my left side. Is IMRT accurate enough to spare me such things as permanent neck and shoulder problems, weakened teeth and jaw, thyroid issues, etc.? I've already accepted that I'll have saliva, taste and swallowing issues but I'm curious to learn how accurate the beams will be and so forth. I'm not looking for chapter and verse on IMRT, just basic, high school-level stuff. The internet, while a great resource, isn't always the best place to turn to because of all the conflicting information. One place I read said that IMRT wasn't that accurate while others suggests that it's accurate down to a few millimetres. > My dentist wanted to remove all my teeth before the radiation started. > I overruled that. Went back to him about a week ago for my first > checkup after treatment; my use of bottled water left me without > fluoridated water, which I should have remembered gets me lots of > cavities, but on the whole my teeth are pretty sound. I have good teeth so I'm hopeful they won't need to be removed especially since it seems my primary will be north of the mouth. I have a couple of wisdom teeth that I haven't removed because they haven't bothered me but I guess those will be coming out because they can be a source of infection. > > Should I have my own dentist do the filling before I see > > the dental oncologist so that he or she won't have an excuse to pull it > > out? > > That would be my pick. Thanks for the advice, clifto. I'll make an appointment first thing tomorrow morning. > > [snip] > > I don't know what stage of NPC I have but I imagine it's fairly [quoted text clipped - 7 lines] > immediately to stage three once a lymph node gets involved, even > just one node (which was the case with me). I'm thinking stage three as well. My biggest fear is that it has metastasized into my left shoulder and into my chest. This summer, while on a weekend trip to Edmonton, I felt a weird, dull sensation in my left shoulder and under my left armpit after a couple of hours of driving. I wrote if off at the time to maybe gripping the steering wheel too tightly (I drive a Hyundai and it doesn't have a lot of weight so you need a good grip). But now, I'm wondering if it was cancer cells making its way down to my chest. I felt the weird shoulder pain two or three more times in the days after my trip and the weird underarm pain once in early September. Since then, no weird shoulder or underarm pain but it's still a source of concern for me. On the positive side, I had a chest x-ray done in September after I saw my GP the first time about the neck mass. It came back clear, add that to no weird sensations in the past couple of months and I'm hopeful I'll come back M0. Still, the past weird sensations are troubling and the fact that the lowest lymph node is 1 cm or 2 cm away from where my neck meets my shoulder adds to my concern. I have no enlarged lymph nodes in my left clavicle so that's a cause for optimism. My surgeon told me that my cancer is "slow growing" and goes in an "orderly progression" so he doesn't think I have any metatases below my neck. I am, however, now skeptical of anything this surgeon has to say because I believe he's putting a positive spin on things and telling me what I WANT to hear instead of what I NEED to hear. For example, "good prognosis", "little or no chance of recurrence" and "resolved in a matter of months" weren't exactly true. Without knowing my exact stage, he doesn't really have any solid basis to say what my prognosis or my chances of relapse are. Back in the day, I used to box a little bit and the punches that hurt the most were the ones that I didn't see coming. Over the next few weeks, as I await and prepare for treatment, I want to arm myself with as much knowledge as possible so I can be prepared to accept and deal with any possibility. Having him give me positive spin and not the realities of the situation isn't going to help me. I was floored when I read that the precense of just one lymph node reduces 5-year survival rate to under 50%. If he told me that straight up, I probably wouldn't have been as shocked. So, I'm wondering if he has any basis for saying that my cancer is "slow growing" and has an "orderly progession". I read that most NPCs are squamous cell carcinomas that grow quickly and can spread randomly. I guess that really wasn't a question as much as my venting my frustration with my surgeon's half-truths. I'm going for an endoscopic examination under general anaesthetic in the next week to ten days so I'll know what's going on soon enough. clifto, if you don't mind my asking, did you have any distant metatases or was it just confined to your neck? I suppose it won't matter much anyway since it looks like I'll be getting concurrent chemotherapy and RT so metatases will effect my outcome more than the treatment I'll be getting in early 2006. But now, I'm wondering if it was > cancer cells making its way down to my chest. I felt the weird > shoulder pain two or three more times in the days after my trip and the [quoted text clipped - 5 lines] > to no weird sensations in the past couple of months and I'm hopeful > I'll come back M0. A PET scan will be the answer to your worries one way or the other. You should be getting one about now anyway. > But now, I'm wondering if it was >> cancer cells making its way down to my chest. I felt the weird [quoted text clipped - 9 lines] > A PET scan will be the answer to your worries one way or the other. You > should be getting one about now anyway. Put not all your faith in PET scans, lest ye be sorely disappointed......... >> Any chance of deafness or blindness is probably going to depend on >> how they have to aim the radiation beams. [quoted text clipped - 6 lines] > "one step at a time" philosophy so I'm trying not to worry about it > until it becomes an issue. But pre-existing vision or hearing problems are not what they are talking about. I think your primary may be a little harder to hit than clifto's or mine (mine was approx right tonsil area). These guys are good. > I would, however, like to learn more about the IMRT process. I know > that I'll be getting RT on my primary (after they find the exact [quoted text clipped - 8 lines] > that IMRT wasn't that accurate while others suggests that it's accurate > down to a few millimetres. Try http://www.alegent.com/body.cfm?id=3725 . Be sure and view the video. One caveat. They do not irradiate you with the gantry in transit. That is merely for positioning. But it will be about 11 one-minute exposures with computer controlled transit and reshuttering between exposures. That would have made for a long video clip, so they used artistic license. >> > [snip] >> > I don't know what stage of NPC I have but I imagine it's fairly [quoted text clipped - 9 lines] > > I'm thinking stage three as well. I thought I was III as well, but I overheard a doctor (substitute EMT) dictate his treatment notes and he dictated "present post-treatment stage IV pharanxeal (you don't expect me to be able to spell this stuff, do you?) patient..." I thought distant meant distant. You know, like maybe toes. > My surgeon told me that my cancer is "slow growing" and goes in an > "orderly progression" so he doesn't think I have any metatases below my > neck. I am, however, now skeptical of anything this surgeon has to say > because I believe he's putting a positive spin on things and telling me > what I WANT to hear instead of what I NEED to hear. Is there any reason to believe he might be trying to keep your hopes up? It has not been my experience the any doctors do that. In fact they generally seem to err on the side of caution. ... > So, I'm wondering if he has any basis for saying that my cancer is > "slow growing" and has an "orderly progession". I read that most NPCs > are squamous cell carcinomas that grow quickly and can spread randomly. That was my understanding. But don't confuse his lack of knowledge or experience with NPC with being a Polyanna. We aren't the best known cancers, no ribbons hanging on buildings for us. Or he could mean that your particular case is moving slowly and compactly. > I guess that really wasn't a question as much as my venting my > frustration with my surgeon's half-truths. I'm going for an endoscopic > examination under general anaesthetic in the next week to ten days so > I'll know what's going on soon enough. Lets hear it for Versed. Thanks for getting back to me Chris. > But pre-existing vision or hearing problems are not what they are talking > about. I think your primary may be a little harder to hit than clifto's or > mine (mine was approx right tonsil area). These guys are good. I meant that I don't have vision or hearing problems as part of my symptoms. So, I'm hopeful that the tumour isn't pressing against my cranial nerves. By extension, if they aren't pressing against my cranial nerves, I'm hopeful that IMRT will be accurate enough to spare me vision/hearing problems as a long-term side effect of treatment. > Try http://www.alegent.com/body.cfm?id=3725 . Be sure and view the video. > One caveat. They do not irradiate you with the gantry in transit. That is > merely for positioning. But it will be about 11 one-minute exposures with > computer controlled transit and reshuttering between exposures. That would > have made for a long video clip, so they used artistic license. Thanks for the information about IMRT. > I thought I was III as well, but I overheard a doctor (substitute EMT) > dictate his treatment notes and he dictated "present post-treatment stage > IV pharanxeal (you don't expect me to be able to spell this stuff, do you?) > patient..." I thought distant meant distant. You know, like maybe toes. You mean that no one told you what stage you were in? I thought distant meant lungs, liver, bones like shoulder, ribs, etc. Can anyone out there clear this up for us? > > My surgeon told me that my cancer is "slow growing" and goes in an > > "orderly progression" so he doesn't think I have any metatases below my [quoted text clipped - 5 lines] > has not been my experience the any doctors do that. In fact they generally > seem to err on the side of caution. I hope he isn't trying to keep my hopes up because that would mean I'm in deep, deep, deep trouble. To be honest, I was somewhat giddy -- if you can believe it -- when he told me it was NPC. For weeks now, I was imagining living for years with indolent lymphoma. When he told me I had NPC with a good prognosis for resolution in a matter of months with little chance of reccurence, I was almost jumping for joy. If anything, towards the end of my appointment, he was trying to bring me down and focus on reality. My mistrust stems mainly from coming home after my appointment and reading up on NPC. I just don't know how he could say things like: "good prognosis", "resolution in a matter of months", "little chance of reccurence", "slow-growing" and "orderly procession" based on the tests I've had: pathology report from incisional biopsy, CT scan of my neck (but not my nasopharynx) and a clear chest X-ray. Wouldn't I need many, many more tests, scans and an endoscopic biopsy before he could say things like that? Plus, he's also somewhat of a cavalier guy. He talks about surgery like it's a walk in the park ("if we need to take it out, we'll just go in there and do it") plus he had me sign my consent form for the biopsy five minutes before I was wheeled into pre-op to meet with the anaesthesologist. Not cool. > > So, I'm wondering if he has any basis for saying that my cancer is > > "slow growing" and has an "orderly progession". I read that most NPCs > > are squamous cell carcinomas that grow quickly and can spread randomly. > That was my understanding. But don't confuse his lack of knowledge or > experience with NPC with being a Polyanna. We aren't the best known > cancers, no ribbons hanging on buildings for us. Or he could mean that your > particular case is moving slowly and compactly. >From your keyboard to God's big computer screen in the sky, I hope he means my particular case is moving slowly and compactly. That would be great but would he be able to tell that just from a pathology report? > > I guess that really wasn't a question as much as my venting my > > frustration with my surgeon's half-truths. I'm going for an endoscopic > > examination under general anaesthetic in the next week to ten days so > > I'll know what's going on soon enough. > > Lets hear it for Versed. You lost me with this one. Humour doesn't travel very well over the Internet. Would you mind explaining what you mean? >>From your keyboard to God's big computer screen in the sky, I hope he > means my particular case is moving slowly and compactly. That would be > great but would he be able to tell that just from a pathology report? Pathologists are the most non-commital doctors there are. "Looks like...", "reminiscent of...","suspicious","atypical". An anecdote: When I first went to GP after having the neck mass biopsy, he asked me what the results were. I told him they were vague and non-commital. He said "You have just got to be forceful with them" and told me to wait in the exam room. He came back in about ten minutes muttering under his breath "Damn pathologists". >> Lets hear it for Versed. > > You lost me with this one. Humour doesn't travel very well over the > Internet. Would you mind explaining what you mean? That is part of the anaesthesia soup that they are using lately. Mixed with something like demerol they can take out any part of me they feel like and I won't care. During my colonoscopy, I vaguely remember watching TV wondering when they would start. The TV was some sort of documentary about the insides of my colon. > >>From your keyboard to God's big computer screen in the sky, I hope he > > means my particular case is moving slowly and compactly. That would be [quoted text clipped - 18 lines] > wondering when they would start. The TV was some sort of documentary about > the insides of my colon. LOL wish I'd had some of that Versed. J >> That is part of the anaesthesia soup that they are using lately. >> Mixed with something like demerol they can take out any part of me [quoted text clipped - 4 lines] > LOL wish I'd had some of that Versed. > J Looks like it comes gratis with colonoscopy. Game? Fig >>> That is part of the anaesthesia soup that they are using lately. >>> Mixed with something like demerol they can take out any part of me [quoted text clipped - 6 lines] >> > Looks like it comes gratis with colonoscopy. Game? I bet they show J the same television show, too. SignatureIf John McCain gets the 2008 Republican Presidential nomination, my vote for President will be a write-in for Jiang Zemin. > >>> That is part of the anaesthesia soup that they are using lately. > >>> Mixed with something like demerol they can take out any part of me [quoted text clipped - 8 lines] > > I bet they show J the same television show, too. Same documentary, different innards. <g> J > > I thought I was III as well, but I overheard a doctor (substitute EMT) > > dictate his treatment notes and he dictated "present post-treatment stage [quoted text clipped - 5 lines] > I thought distant meant lungs, liver, bones like shoulder, ribs, etc. > Can anyone out there clear this up for us? According to madiba on sci.med.diseases.cancer staging NPC is complicated but: Stage IV is distant mets like in lung or brain, bone or liver. (M1) Stage IV is also when the lymph nodes are N3 meaning >6cm in size or in the supraclav. fossa (ie down to your shoulders) Stage IV is also T4 tumor with any node stage. (maybe something in the above, explains Chris' situation?) > > > My surgeon told me that my cancer is "slow growing" and goes in an > > > "orderly progression" so he doesn't think I have any metatases below my [quoted text clipped - 23 lines] > many, many more tests, scans and an endoscopic biopsy before he could > say things like that? Hi, unsure where to jump in here. I think, like many, you have to live with some uncertainty at this point. Don't get too hung up on scans. Cancer can spread locally or through the lymph nodes or through the blood stream. They've poked around with your lymph nodes which came up negative. There's a limit to how many times they should biopsy your lymph nodes Your lymph nodes may be disturbed from having had the infection (as I think you said earlier) and infections are a risk, not to mention chronic lymphedema. So you're going with the theory that you are Stage III and the correct treatment is radiotherapy alone or (more commonly) radiotherapy plus chemotherapy. And you can "take that one to the bank" because it's my understanding that BC has equivalent or better cure rates than anywhere else in North America or Europe. Now I want to talk about all this (although some of the readers may get tired of reading this). There may be micromets floating around somewhere in your body (lymph nodes or bloodsteam) or maybe there are none. Maybe it's just local. Micromets cannot be seen on scans. Scans cannot treat, nor cure your cancer. Let's hypothesize that they see a tumour on your liver. What would your treatment be? It would be the same, RT to the local tumour and chemotherapy. Why? The goal is to shrink the NPC tumor to (hopefully) oblivion and the chemo mop up any micromets (if any). The chemo's like extra insurance. The goal is also to prevent the tumour from growing more and causing you speaking, breathing, swallowing problems. The side effects are probably more severe with both combined. You could discuss this with the oncologist and/or rad onc. The other option is only RT, but then you'd be sitting around worrying that you should have done the chemo, not knowing if there were micromets floating around (or not). Your decision to discuss with your experts. I'm going with the theory (for now) that a cure is in the pcture for you and like Chris and clifto, you'll tolerate the treatment quite well and soon be on the healing side of it. I hope this helps and doesn't worry you more. J Nicely put, j. (Personal note - after Dr. Richman the substitute ENT dictated stage IV, I have not yet seen my Onc or whoever my new RadioOnc will be to ask them. I had always thought stage III ) > Nicely put, j. > > (Personal note - after Dr. Richman the substitute ENT dictated stage IV, I > have not yet seen my Onc or whoever my new RadioOnc will be to ask them. I > had always thought stage III ) Thanks Chris and Hi, I guess I'd be asking all 3 "on what basis am I Stage IV?" if they all give the same reasons, then I would think that would be right. On the other hand, I wouldn't want them each agreeing with each other, just because it's the path of least resistance. Have any of you found the AJCC classification system? It's mentioned here and various other staging systems and restaging. http://www.thedoctorsdoctor.com/diseases/nasopharyngeal_ca.htm (from http://www.thedoctorsdoctor.com/bodysites/nasopharynx_sinonasal.htm ) Just in case anything there helps you with questions to ask (and hopefully doesn't confuse things more ). Best, J Before I begin, I want to thank you, J, for your very reasoned and calming post. Since I was given my diagnosis, my mind has been going a mile a minute thinking and thinking and thinking about my cancer, what will happen in the next few months, what might happen in the next few months, what happens if it turns out that I only have weeks to live, etc. Basically, I was going a bit nuts. But after reading your post, I decided to quit obsessing, quit surfing the Internet about NPC and just try to take a mental break from it. Hence, my no show on the board last night and most of today. It's helped. I'm a lot calmer though, at times, my mind still goes a mile a minute but at least it's not 24/7 like it was over the weekend and Monday. A large part of that was because of your post so, again, thanks for that. > Now I want to talk about all this (although some of the readers may get tired of > reading this). [quoted text clipped - 9 lines] > also to prevent the tumour from growing more and causing you speaking, breathing, > swallowing problems. You're right about this and, from a part that I snipped, that I have to live with some uncertainty right now. All I know is that the pathology report says I have nasopharynx cancer, the chest X-ray says my chest is clear, and my neck CT shows I have those active nodes on the left side of my neck. So, there isn't much information to go on right now and I need to relax and just wait to see how big the primary is and chest scans to see if it's spread. Thinking about it is a waste of energy right now so I need to backburner it and try to enjoy the holidays and make myself strong for what's to come. I was obsessing about metatases so much, I woke up suddenly early Monday morning with a mental flash of pockets of cancer in my shoulder, ribs and lungs. Since then, I've gotten a hold of myself and had a pretty decent sleep last night. > The side effects are probably more severe with both combined. You could discuss > this with the oncologist and/or rad onc. The other option is only RT, but then > you'd be sitting around worrying that you should have done the chemo, not knowing > if there were micromets floating around (or not). Your decision to discuss with > your experts. I have a choice? I thought that in Canada you pretty much have to follow the plan and timeline they give you. If you don't agree, then it's sign something to release them of liability and go off to some private clinic in the US somewhere on your own dime. Anyway, I'm anticipating the standard RT to the head and neck along with rounds of chemo. > I'm going with the theory (for now) that a cure is in the pcture for you and like > Chris and clifto, you'll tolerate the treatment quite well and soon be on the > healing side of it. Me too, that's what I'm hoping for. My goal is to be able to enjoy a carefree Labour Day Weekend 2006 complete with celebatory BBQ attended by family and friends during which I can fully enjoy a nice juicy steak, a salad with fresh garden tomatos, lush soft bread and cold, cold beer. > I hope this helps and doesn't worry you more. It's helped a lot. It calmed me down to the point where I realized that I just had to stop and let some things go. Again, thanks! By the way, I have to say that the Internet, while a great tool and a marvel of modernity, isn't the greatest place for someone who has just been diagnosed with cancer. One of the first webpages that I managed to hit was this one: http://pine-street.net/_wsn/page4.html The page and another patient account talking about how he lost all of his teeth almost gave me heart palpations. Then there are the wide-ranging cure rates in varying studies: 20% to 85%. I think doctors should have their support staff ready to provide an information package to patients who have been diagnosed with cancer or have contact information for someone they can talk to for more information. Just letting them go out and get information on their own willy-nilly from the Internet can add to the mental trauma. Speaking of the way doctors are handling things, is the silence from the system par for the course here in Canada? Since my doctor gave me my diagnosis on Friday afternoon, I've heard nothing. No one has contacted me about the endoscopic exam, no one has contacted me about further scans, the Cancer Centre hasn't contacted me, nothing but silence. It's been days. I waited two weeks for an ultrasound and six weeks for a CT scan previously. The wait times can't be that long for someone who has already been diagnosed with cancer, right? Would it help to call my surgeon's office and see what's up? Or will I just get a "that's the system" that I got from my GP's office when I complained about the four month wait for an ENT (I said I didn't want to wait that long -- that's how I ended up seeing a general surgeon instead of an ENT specialist)? > Before I begin, I want to thank you, J, for your very reasoned and > calming post. Since I was given my diagnosis, my mind has been going a [quoted text clipped - 107 lines] > long -- that's how I ended up seeing a general surgeon instead of an > ENT specialist)? We (the cancer clinic) often get berated by patients for sloth. In fact we see 100% of referred patients within 2 weeks, and start RT on 85% of those who need it within another 2 weeks. Call your ent guy and make sure the referral is in > > Why? The goal is to shrink the NPC tumor to (hopefully) oblivion and the chemo > > mop up any micromets (if any). The chemo's like extra insurance. The goal is [quoted text clipped - 22 lines] > I have a choice? I thought that in Canada you pretty much have to > follow the plan and timeline they give you. Well, I don't think you'd be black-listed or run out of town if you said you didn't want chemo. <g> Last I checked, we're still in the free world. Everyone has choices. It's knowing you're getting the best treament suggestions and knowing the risks and side effects and proceeding with knowledge and confidence. > If you don't agree, then > it's sign something to release them of liability and go off to some > private clinic in the US somewhere on your own dime. Anyway, I'm > anticipating the standard RT to the head and neck along with rounds of > chemo. Good to hear it. Let's see what the endoscope reveals. > > I'm going with the theory (for now) that a cure is in the pcture for you and like > > Chris and clifto, you'll tolerate the treatment quite well and soon be on the [quoted text clipped - 21 lines] > his teeth almost gave me heart palpations. Then there are the > wide-ranging cure rates in varying studies: 20% to 85%. I imagine it's hard reading that and the uncertainty, but I don't see any options but going forward. As to whichever lost his teeth, not everyone takes as good care of theirs as you do. Thanks for that web page. It's very good of patients to "tell it like it was". I appreciate that. > I think doctors should have their support staff ready to provide an > information package to patients who have been diagnosed with cancer or > have contact information for someone they can talk to for more > information. Yes, I agree, but apparently they don't have the budgets for that. It's particularly difficult (I think) for NPC (head and neck cancers), because there might be local support groups for colon, or breast or prostate cancer, but unlikely for your type. > Just letting them go out and get information on their own > willy-nilly from the Internet can add to the mental trauma. > > <snip - I think Steph made a suggestion about who to call> Yes, well, other Canadians (if comparing to Americans) may find their waits longer, but the other way of looking into it, is you've had time to find us, found other patients you can relate to, get some reassurance from Steph about the treatment and have time to "digest" the situation (which might happen if someone gets too rushed by the system). So we'll be here with you, waiting for the scope and scope results. And you'd better get through this and be cured, because I've got news for you. We're all going out to the barbecue next year. (ok, I'm just kidding, but your description did sound inviting). I do hope that you won't worry too much and will continue getting good sleep. Until next exchange. Best, J > clifto, if you don't mind my asking, did you have any distant metatases > or was it just confined to your neck? I suppose it won't matter much > anyway since it looks like I'll be getting concurrent chemotherapy and > RT so metatases will effect my outcome more than the treatment I'll be > getting in early 2006. I've got more comments regarding your article, but thought I'd hit this one before I go to bed. Nope, no metastasis at all that we know of. The new PET scan shows that all the original cancer is gone, but there are some things "lighting up" in another area just under my chin; if that's malignant, it might or might not be metastasis, as everyone so far thinks that's an unlikely place for my cancer to have spread. SignatureIf John McCain gets the 2008 Republican Presidential nomination, my vote for President will be a write-in for Jiang Zemin. > I'm thinking stage three as well. My biggest fear is that it has > metastasized into my left shoulder and into my chest. This summer, [quoted text clipped - 7 lines] > weird underarm pain once in early September. Since then, no weird > shoulder or underarm pain but it's still a source of concern for me. What year and model, please? Manual steering and clutch? I'm just curious. I had a Hyundai. J > What year and model, please? Manual steering and clutch? > I'm just curious. I had a Hyundai. A 2004 Hynudai Elantra GT. Automatic transmission. The list price is $24,000+ but I got it for $18,000 because it was an August sale (got to make room for next year's models) and because it was damaged in a summer hail storm (minor dents on the roof and the hood -- I don't care that much about them). It drives really smoothly and has lots of power. The problem with the car is that it has hardly any weight on it so you have to have a good grip on the steering wheel once you get over 50 or 60 km/h. I'm hoping the prolonged tense grip on the highway was what gave me the weird pain and not distant metastases from NPC. Like I said, I haven't felt the pain since so fingers crossed. > > What year and model, please? Manual steering and clutch? > > I'm just curious. I had a Hyundai. [quoted text clipped - 12 lines] > weird pain and not distant metastases from NPC. Like I said, I haven't > felt the pain since so fingers crossed. Sounds encouraging and especially after reading your new post. That Elantra sounds like the one that caught my eye on advertising sometime in the past few weeks. Not that I'm buying, just caught my eye. What a good deal you got there ! I put 18 kg bag of cat litter in the trunk - served triple duty. I only got stuck twice in 19 years, on ice, but it was a manual transmission and cat litter helped me out with the first one, a female cabby pushed in the 2nd instance. :-) In Spring, it served it's original purpose. But I don't know if yours is front or rear wheel drive or if you've got the space in the trunk. Just an idea. J > I put 18 kg bag of cat litter in the trunk - served triple duty. > I only got stuck twice in 19 years, on ice, but it was a manual [quoted text clipped - 5 lines] > space in the trunk. > Just an idea. Actually, I have two sandbags in my trunk now. It makes it a lot easier to drive in the snow and ice but it adds about 2 litres per 100 km on my mileage. I'll probably take the bags out in the Spring when the snow is all melted. Front wheel drive. Not much space in the trunk. I sometimes I have to put things in the backseat because the sandbags take up about 30% to 40% of the space. > > What year and model, please? Manual steering and clutch? > > I'm just curious. I had a Hyundai. [quoted text clipped - 8 lines] > car is that it has hardly any weight on it so you have to have a good > grip on the steering wheel once you get over 50 or 60 km/h. So I read your reply about the sandbags. So what's it doing? "Travelling" (ie hard to stay in a straight line?) I have that trouble :p with a heavier automatic, sometimes slips off the edge of the pavement. I never had problems with that with the manual - felt like I had more control. Or are you getting blown over by larger vehicles? That would happen to me on highways when passing big trucks. Oh and I was looking at the interior (online) of yours. It's (the driver side) less roomy than the old, much older Hyundais. (uncomfortable or new position) might account for part of the pain you were having, along with gripping too hard. J-trying to understand. > I'm hoping the prolonged tense grip on the highway was what gave me the > weird pain and not distant metastases from NPC. Like I said, I haven't > felt the pain since so fingers crossed. > > Then I got home and read all about nasopharynx cancer. While my doctor > > was right about the "good" prognosis, the likely long-term side effects [quoted text clipped - 17 lines] > can't swallow a good-sized bite of steak like I used to, but you > won't have the epiglottis problem from the sound of it. Hello clifto and/or chris, I wanted to ask you about this. After the treatment, is it harder to open the mouth (or was your difficulty at the back of the throat)? If either you or chris had problems opening mouth, does it eventually improve? My other question is in regards to foods. Did either of you try making "flat" popsicles with any of the liquids. Would that help with Boost or any of the nutritional drinks. Somebody mentioned earlier they didn't like the taste of one or the other, so I was wondering about adding something for flavour. Any chance you've compiled a do and don't list? as far as eating or drinking. "CHY" might want to start looking out for deals on various liquid foods etc. Eggnog anyone? J > Hello clifto and/or chris, > I wanted to ask you about this. > After the treatment, is it harder to open the mouth (or was your difficulty > at the back of the throat)? It was at the back of my throat. I'm sure mine was more related to the biopsy than the RT, though the RT may have exacerbated it. > If either you or chris had problems opening mouth, does it eventually > improve? I'm improving gradually. At first I had to limit myself to baby-sized bites of food, and at that they felt like they were going down one side of my throat. Gradually I'm taking more normal sized bites, but I had one incident a few weeks ago where a piece of meat about 20x30x3 mm got in a very bad place, restricted my breathing and just would not come loose for the longest time. I could feel that all it would have taken to get that meat down my trachea was one quick inhalation; but rapid exhalations didn't move it, and it didn't come loose for coughing for about 15 minutes. At some point far into the RT I also found I couldn't chug drinks, had to take them one swallow at a time. That's pretty much resolved itself. Most often what I chug is water at room temperature. Had to take pills one or two at a time. That's a big change for someone who used to be able to take ten or fifteen pills in one swallow without liquid chaser. I can now take seven or eight at once, but need the water. It's hard to tell how much of the dry throat/mouth is from treatment and how much from my "preexisting condition". Remember, I started complaining of dry mouth and throat in January 2004, had an ENT do pharyngoscopy five times in 2004 (last in November) without seeing any cause. CA was first spotted by scope in April 2005. Taste is going to be another question mark. Back around 1980, I quit smoking for eleven days; I gained 13 pounds on probably 400 calories a day, eating so little because everything tasted like sh.t. That's not a euphemism for "it tasted bad", I mean it tasted like sh.t smells like it would taste. Hamburgers, soda, milk, steak, french fries, salad... whatever. Anyway, I smoked right up to just a few days after my treatment was complete, by which time all my taste buds were gone and everything had the same pseudometallic taste. So as my taste returns gradually and I find myself no longer experiencing foods the same as I used to, I can't be sure whether it's because I'm not 100% back to normal or because I quit smoking. Right now the only thing that tastes really really good is strawberry yogurt, which is becoming something of an addiction for me! I've been buying it in two-pound containers, and finishing a container in ten minutes or so without the will power to put half back in the fridge. I'm going to try to resist that stuff in future, because I'm gaining back a little more weight than I'd like, and partly so I don't turn into a big hairy lactobacillus. > My other question is in regards to foods. > > Did either of you try making "flat" popsicles with any of the liquids. > Would that help with Boost or any of the nutritional drinks. Why didn't you mention that back when? That sounds like a good idea. :) > Somebody mentioned earlier they didn't like the taste of one or the other, so > I was wondering about adding something for flavour. I didn't have any problem with Boost, in fact with my taste messed up as it was I rather liked it. I did see talk of making smoothies with various stuff, but never got around to trying it myself. > Any chance you've compiled a do and don't list? as far as eating or drinking. I haven't because I'm pretty sure the RT was the least of my problems regarding eating and drinking. > Eggnog anyone? I never got along with eggnog. Kinda curdles my girdle. SignatureIf John McCain gets the 2008 Republican Presidential nomination, my vote for President will be a write-in for Jiang Zemin. > I'm improving gradually. At first I had to limit myself to baby-sized > bites of food, and at that they felt like they were going down one [quoted text clipped - 5 lines] > quick inhalation; but rapid exhalations didn't move it, and it didn't > come loose for coughing for about 15 minutes. Good grief clifto! That's an inch by an inch-and-a-half! That's too big for normal people, much less you and me. (Although I found a small piece of chicken overly chewed could expand to be that big). >> I'm improving gradually. At first I had to limit myself to baby-sized >> bites of food, and at that they felt like they were going down one [quoted text clipped - 9 lines] > normal people, much less you and me. (Although I found a small piece of > chicken overly chewed could expand to be that big). I've speculated that it slipped past the chewing process somehow. SignatureIf John McCain gets the 2008 Republican Presidential nomination, my vote for President will be a write-in for Jiang Zemin. > Taste is going to be another question mark. Back around 1980, I > quit smoking for eleven days; I gained 13 pounds on probably 400 [quoted text clipped - 14 lines] > back a little more weight than I'd like, and partly so I don't turn > into a big hairy lactobacillus. Well, I heard on TV just a few days ago, that the taste receptors are in the nose, at the or near the eye level. The airflow takes the smell up the nose and over the receptors. > > My other question is in regards to foods. > > [quoted text clipped - 13 lines] > > I never got along with eggnog. Kinda curdles my girdle. Curdles your girdle, eh? Freshly made, with your own ingredients? Yum, I love it, but there's one ingredient I put less in. I didn't mention it way back when because it was (the thoughts of) Christmas and a craving for eggnog that triggered that idea and it's not my fault that Christmas isn't in spring or summer (here). :p I would have to go see if there's different models of popsicle moulds or use plastic dividers. Still working on the stick part for those. Maybe they sell candy sticks or use qtip (without the fuzzy white stuff). J Thanks to you and Chris for all your input. Hopefully CHY and Araik are busy saving posts or taking notes. > I would have to go see if there's different models of popsicle moulds > or use plastic dividers. Still working on the stick part for those. > Maybe they sell candy sticks or use qtip (without the fuzzy white > stuff). J The tupperware moulds from my childhood, which I still have, have a built- in plastic handle/support for the popsicle. I've seen similar in grocery stores & Walmart type stores, but only in summer. Popsicle sticks can be found in abundance at craft stores like Hobby Lobby. People make I don't know what out of them?!? I can imagine experimenting with popsicle sticks & an ice cube tray for little bites. Wish I'd thought of this for Socks. We made smoothies of 100% fruit. Could have poured some into moulds for popsicles. Some things don't freeze very hard though. Bananas, for example. Now I've got the eggnog craving. Maybe we'll make some this weekend. My tummy doesn't pooch out far enough. Maybe the eggnog will help. :p Fig me@privacy.net said... > Popsicle sticks can be > found in abundance at craft stores like Hobby Lobby. People make I don't > know what out of them?!? I can imagine experimenting with popsicle sticks > & an ice cube tray for little bites. Aha, is this a lightbulb I see before me? I've been wondering about popsicles - are they what are known as ice lollies in the UK? Sort of flavoured strange-shaped ice cube on a stick? Like this, sort of thing? ____ / \ / \ l l l l l l l l l l l .. l l .. l l .. l l .. l \__..__/ ll ll ll ll ll ll ll ll SignatureEmily, growing sideways > me@privacy.net said... >> Popsicle sticks can be [quoted text clipped - 28 lines] > ll > ll Uh, I don't think I'll comment on your drawing. Are you sure you intended for THIS NG? lol If you buy popsicles in the store here, there are usually 2 frozen together per paper envelope. One kid breaks them apart & the other chooses first. Fig, blushing me@privacy.net said... > > Aha, is this a lightbulb I see before me? I've been wondering about > > popsicles - are they what are known as ice lollies in the UK? Sort of > > flavoured strange-shaped ice cube on a stick? Like this, sort of > > thing? [snip bad drawing of a lolly on a stick] > Uh, I don't think I'll comment on your drawing. Are you sure you intended > for THIS NG? lol *Giggle* It came out taller and thinner in your reply! > If you buy popsicles in the store here, there are usually 2 frozen > together per paper envelope. One kid breaks them apart & the other > chooses first. Oh! I think I know what you mean - sort of like two ice lollies joined together like Siamese twinses. Like this http://www.claycritters.com/new-popsicles.jpg and this http://www.fabricattic.com/popsicles.jpg We're more familiar with these: http://www.bbc.co.uk/food/images/news/lollies_300x193.jpg or this type of thing http://www.kingbros.co.uk/products/ic/walls.gif On the other hand, this is what I assumed Popsicles to be, until someone mentioned sticks: http://static.flickr.com/3/3564820_97a6d46ffd_m.jpg SignatureEmily - waiting for summer. We have all you show. These are the kiddie kind, but I like lime. They are more sugar/water/flavoring: > Like this http://www.claycritters.com/new-popsicles.jpg > and this http://www.fabricattic.com/popsicles.jpg > > We're more familiar with these: This kind tends to be made at least partially of fruit or it's chocolate or is creamy. http://www.bbc.co.uk/food/images/news/lollies_300x193.jpg > or this type of thing Beat the cream or whatever used. > http://www.kingbros.co.uk/products/ic/walls.gif Push ups. For kiddos mostly. Less messy. >On the other hand, this is what I assumed Popsicles to be, until >someone mentioned sticks: > http://static.flickr.com/3/3564820_97a6d46ffd_m.jpg J's trying to come up with a way people with sore, irritated throats from radiation can enjoy. Socks liked them a lot from time to time, but he had no problem opening mouth & could eat regular size. Also ice cream bars, especially toffee. We get sorbet frozen into scooped out fruits - pineapple, coconut, orange, lemon that are a big hit with both of us & friends. They come with teensy spoons. If it weren't 12 degrees F, I'd have one now! Now let's discuss hot chocolate which I'm about to make... Have a wonderful holiday, you & your family. I'll be off to Big D. Hugs, Fig >> http://www.kingbros.co.uk/products/ic/walls.gif >> > Push ups. For kiddos mostly. Less messy. We had two things we called push-ups. One was this, the other was a cardboard tube maybe 1-1/2" to 4 cm in diameter, in which a cylindrical hunk of orange sherbet sat on a cardboard ring attached to a stick that went up the middle of the sherbet. You pushed the stick up to move the cardboard to move the sherbet out of the cone so you could lick the sherbet. Haven't seen them in some time now. SignatureIf John McCain gets the 2008 Republican Presidential nomination, my vote for President will be a write-in for Jiang Zemin. clifto@clifto.com said... > >> http://www.kingbros.co.uk/products/ic/walls.gif > >> [quoted text clipped - 6 lines] > move the cardboard to move the sherbet out of the cone so you could > lick the sherbet. Haven't seen them in some time now. Sherbert? Are we having another of those transpondian translation moments? To me, sherbert is a sort of zingy fizzyish powder, and not something to be licked. We dip things into sherbert, or stick it in the middle of boiled sweets. The flying saucers are a sort of rice paper with a lump of sherbert in the middle... www.sweets-direct.co.uk/sherbets.htm SignatureEm, in the mood for a Sherbert Fountain > clifto@clifto.com said... >> We had two things we called push-ups. One was this, the other was a [quoted text clipped - 10 lines] > with a lump of sherbert in the middle... > www.sweets-direct.co.uk/sherbets.htm I'll be hornswoggled. I've never heard of the fizzy powder, but when I Google most of the responses are about the powder! Try this recipe as a description: <http://www.freerecipe.org/Dessert/Frozen/Sherbet/orange-sherbet-recipe-bscr.htm> We had the rice-paper flying saucers, but with nothing in them or with little candy beads (at the risk of doing this all over, the kind of candy beads used on the top of nonpareil candies). Fizzy candies are a relatively new thing over here. I believe the first on the market was called Pop Rocks, tiny rock-like chunks of candy that fizzed on your tongue. But with all sorts of variations on that theme on the market, I've still never heard of sherbert powder, or for that matter a powdered version of the fizzy candy here. SignatureIf John McCain gets the 2008 Republican Presidential nomination, my vote for President will be a write-in for Jiang Zemin. clifto@clifto.com said... > > clifto@clifto.com said... > >> We had two things we called push-ups. One was this, the other was a [quoted text clipped - 10 lines] > > with a lump of sherbert in the middle... > > www.sweets-direct.co.uk/sherbets.htm (I can't spell. Not sherbert. Sherbet. No second 'r'.) > I'll be hornswoggled. I've never heard of the fizzy powder, but when I > Google most of the responses are about the powder! Try this recipe as > a description: > <http://www.freerecipe.org/Dessert/Frozen/Sherbet/orange-sherbet-recipe-bscr.htm> It sounds nice. Rather like a sort of fluffy sorbet perhaps? > We had the rice-paper flying saucers, but with nothing in them or with > little candy beads (at the risk of doing this all over, the kind of > candy beads used on the top of nonpareil candies). Uh-oh, hang on a minute... aha. They're like hundreds-and-thousands, but spherical. Alayne? What do we call those little sugar bobbles that sit on top of things like giant chocolate buttons? You know, the things that aren't hundreds and thousands ('cos they're long) but are bobble- shaped? > Fizzy candies are a relatively new thing over here. I believe the first > on the market was called Pop Rocks, tiny rock-like chunks of candy > that fizzed on your tongue. But with all sorts of variations on that > theme on the market, I've still never heard of sherbert powder, or > for that matter a powdered version of the fizzy candy here. If you saw the first Harry Potter film you'll have been puzzled by the reference to Prof Dumbledore's sherbet lemons then :-) For the record, they're boiled sweets, lemon flavoured, with sherbet in the middle. As you suck them they're ordinary lemon sweets (candies), but when you reach the middle they 'zing'. At least, I think that's what they are. I like sherbet, but I'm not too keen on sweets generally other than mints which I keep in the car. Who was it who said that the Americans and the English were divided by a common language? Was it Oscar Wilde? He was right. Hey, you know 'fanny packs'? Did you know that 'fanny' is usually a rude word over on this side of the Pond? It's a shortened form of 'Frances' (the female version of the name), but it's rarely used like that these days because it's come to mean a lady's, er, you-know-where <blush>. So, in Rightpondia, we call fanny packs 'bum bags'. Is 'bum' the same thing as a person's bottom on your side of the Pond? I mean, I know it can mean a tramp, but does it mean the other as well? Somehow it's not the rude word here that it ought to be, given what it means. Odd thing, language. SignatureEmily > clifto@clifto.com said... > > > clifto@clifto.com said... [quoted text clipped - 17 lines] > > Google most of the responses are about the powder! Try this recipe as > > a description: <http://www.freerecipe.org/Dessert/Frozen/Sherbet/orange-sherbet-recipe-bscr .htm> > It sounds nice. Rather like a sort of fluffy sorbet perhaps? > [quoted text clipped - 7 lines] > that aren't hundreds and thousands ('cos they're long) but are bobble- > shaped? Not that I would be admitting to be domesticated and do such things like cooking, but from my limited experience I think we get hundreds & thousands and the longer version is simply sugar strands?? Jelly diamonds are my fav. though. and bit fat glace cherries ;-) > > Fizzy candies are a relatively new thing over here. I believe the first > > on the market was called Pop Rocks, tiny rock-like chunks of candy [quoted text clipped - 21 lines] > word here that it ought to be, given what it means. Odd thing, > language. Hmm, fanny pack - goodness Emily - blushing as red as my t-shirt. Hugs Alayne > "Emily" <me@privacy.net> wrote in message > [quoted text clipped - 14 lines] > > > Hmm, fanny pack - goodness Emily - blushing as red as my t-shirt. I don't have a clue why you're blushing at fanny pack, but something tells me I don't wish to know. LOL Seems like bum bags does hail from UK, NZ and AU. I might have known she meant fanny packs and I only know one use for that, thankfully... <g> There was a "fanny" (nickname) somewhere in our family, but now who escapes me and that word was commonly used in our (family) get togethers, so thanks for the memories and giggles. J studydras@anon.inv said... > Did you know that 'fanny' is usually a rude word over on > > > this side of the Pond? It's a shortened form of 'Frances' (the female [quoted text clipped - 5 lines] > I don't have a clue why you're blushing at fanny pack, but something tells me I > don't wish to know. LOL Um. See above ^^^^ In UK English, 'fanny' is a rude word. Not half as rude as the four letter word that begins with 'c', which I will not write or say (I don't even like to /think/ that one), but I think I'm right in saying that it means the same thing. SignatureEmily. > studydras@anon.inv said... > > Did you know that 'fanny' is usually a rude word over on [quoted text clipped - 8 lines] > > > Um. See above ^^^^ In UK English, 'fanny' is a rude word. Unfortunate they couldn't pick a more original word or acronym. If I've done my research properly it dates back to the Teutonics 1170? or 1190? And still being used as a primary name these days. Fannie as a name for girls has been one of the 1,000 most popular names in the United States 9 decades since 1880. - could be the name of an Irish saint. Certainly names /emails findable on searches. Interesting summary of Teutonic Knights - starts with Jerusalem. http://www.the-orb.net/encyclop/religion/monastic/opsahl2.html J studydras@anon.inv said... > Unfortunate they couldn't pick a more original word or acronym. > If I've done my research properly it dates back to the Teutonics 1170? or 1190? > And still being used as a primary name these days. Quite so. There's a Frances in my family who was occasionally called Fanny when she was younger. As far as she was concerned it was a perfectly normal abbreviation. These days she prefers to be called Fran if her name's to be abbreviated. Mind you, I've a cousin in her mid 40s (same as me) whose name is Gay. Back in the 50s and 60s it was a respectable name and not at all unusual. SignatureEmily totallyfake@emailaddress.com said... > Hey, you know > > 'fanny packs'? Did you know that 'fanny' is usually a rude word over on [quoted text clipped - 8 lines] > > > Hmm, fanny pack - goodness Emily - blushing as red as my t-shirt. Yebbut, that's what the Leftpondians call 'bum bags'! I was rather stunned the first time I came across the name as well. Just don't ask them why they object to being called 'Merkins' :-) SignatureEmily > totallyfake@emailaddress.com said... > > Hey, you know [quoted text clipped - 13 lines] > stunned the first time I came across the name as well. Just don't ask > them why they object to being called 'Merkins' :-) "Yebbut" now I know you are definitely talking like a teenager (or watching too much Little Britain!) but quite frankly "am I bovvred" (word used excessively in this household by oldest - by natal - member of household ;-) Hugs Alayne > Who was it who said that the Americans and the English were divided by > a common language? Was it Oscar Wilde? He was right. Hey, you know [quoted text clipped - 7 lines] > not the rude word here that it ought to be, given what it means. Odd > thing, language. Thanks for the enlightenment re candies. I've never seen any of this you describe. I'm wondering on the lemon ones - who does the boiling. Are they boiled before you purchase them, or do you get out the sauce pan at home? Another thing I just thought of: when we use the word 'sweets,' it's generally in the negative context, 'I don't eat sweets.' If we are wanting to partake of a sweet, we tend to call it by name. Mints are mints, hard candies are hard candies & creme brulee is...mmmmm. I have been schooled not to call a fanny pack such in Rightpondia. I was told 'waist pack' I think. With exposure to your literature, I think most of us know what a bum is, but I rarely hear the word - wonder if 'bummer' came from that. We tend to use 'butt' & 'buns' these days, probably from the fitness crowd. I also hear 'tush' & 'booty' & but not so much in polite company. Growing up, we said 'bottom,''rear' or 'dierrere' (sp). I don't think we think of that part of the body as so indelicate. Mostly we want to make it smaller, firmer. I'm failing miserably in that department. In the workplace these days, despite sexual harassment policies, anything goes, or so it is in oil/gas. The ribald humor & laughter in hallways gets loud. After 5, or often before, we crank our music & insults fly. Fuddy duddies don't seem to exist anymore. I have almost lost my ability to blush. Slightly OT - Night before last, I totalled my car so yesterday morning bought a new Prius. Was experiencing a little buyer's remorse & sadness over the loss of my comfy junker. About 3:30, a friend down the hall cut loose with 'She's so fine my 409' & other Beach Boy car tunes - blaring. Then he stepped out of his office & did a stand-up car comedy routine. I'm lucky to work in such a fun-loving community. So why am I now crying now? I think it's because so much is changing so quickly & every aspect of the life I shared with Socks is disappearing in only 3-4 months. Most of his clothing is gone. My music is now on MP3. Both of our cars are gone. My cell phone is different. The Prius is so different from any car I've ever seen that I'm not sure how to do anything. It's full of video displays, keys that you keep in your purse, ipod ports - it's a mind boggle. Fortunately, they have Prius classes & the dealership will explain all once I formally buy it 1/2/06 or sooner if I go in, but still... I'm planning to redo my living room - it's faded & tired looking after 22 years - but maybe I'll hold off. Sometimes I feel surreal, like it's not really me here anymore, like this is someone else's life & I mourn the |
Enable EMail Alerts
Start New Thread
Reply to this Message