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Medical Forum / Diseases and Disorders / Cancer / January 2006New DX NPC: IMRT Available But Not Appropriate
Hi everybody, I had my first meeting with the radiation oncologist this morning. He too gave me a good prognosis. He concurred with the other doctors that the cancer should respond very positively to treatment. He also explained to me why I don't have distant metastases. Based on clinical evaluation (clear chest sounds, chest X-ray, liver function blood test, lymph node body exam), he doesn't think it has spread beyond the head and neck. That's the good news. The bad news is he doesn't think he can use IMRT on me. Given my age and extent of my nodal involvement, he wants to be sure that he gets all of the cancer in the area and any possible micromets. He's irradiating all of the nasopharynx, the space behind my ears going down to the mouth/jaw, the outside lymph node chain on both sides of my neck and the inside lymph node chain under my chin. He's going down past my clavicle to the lymph nodes on the top of my rib cage. As a result, I'll definitely have permanent dry mouth, permanent loss of my sideburns, facial hair, beard and some of the hair around my ears. Since the mandible is getting irradiated, there is a chance I'll have trismus and swallowing problems. I may also be more susceptible to cataracts later in life and have thyroid problems that can be easily managed with medication. My first reaction is: Should I get a second opinion? I thought IMRT was the standard and that even if they need to get a wide area, they could still make adjustments to lessen the impact on other structures. Is it possible to fight to get IMRT used or, as the oncologist said, there's just too much of an area to irradiate so IMRT is not practical? Steph, any insights? They still don't know the extent of the primary yet so how do they know they have to irradiate such a large area? Or is it because of the nodal involvement, they have to do the large area? If it's possible to do IMRT without jeopardizing a good outcome, I want IMRT. I'm just wondering if I randomly got an oncologist who's being overcautious or if my case truly dictates that IMRT is not feasible. > Hi everybody, > [quoted text clipped - 28 lines] > there's just too much of an area to irradiate so IMRT is not practical? > Steph, any insights? For extensive disease, the benefits of IMRT over conventional start to diminish. I think only your onc can make the call. > They still don't know the extent of the primary yet so how do they know > they have to irradiate such a large area? Or is it because of the > nodal involvement, they have to do the large area? They will irradiate the disease they can see, plus areas where microscopic disease may be lurking. > If it's possible to do IMRT without jeopardizing a good outcome, I want > IMRT. I'm just wondering if I randomly got an oncologist who's being > overcautious or if my case truly dictates that IMRT is not feasible. We treat only a minority of out npc patients with imrt. You have to trust your onc, I think Thanks for getting back to me so quickly Steph. > They will irradiate the disease they can see, plus areas where microscopic > disease may be lurking. I think that's why they are doing such a large area. It seems to me they are irradiating all the areas where lymphatic drainage occurs. I was hoping that they would leave the inside of the neck alone and only do the outside but I guess he's doing it all to be safe. > > If it's possible to do IMRT without jeopardizing a good outcome, I want > > IMRT. I'm just wondering if I randomly got an oncologist who's being > > overcautious or if my case truly dictates that IMRT is not feasible. > > We treat only a minority of out npc patients with imrt. You have to trust > your onc, I think I see. I thought that IMRT was the rule rather than the exception -- that's why I was disappointed when he told me it wouldn't be appropriate for me. But now I see that its the other way around and IMRT is the exception and conventional RT is still the rule. So, was his rundown of the possible side effects just to make me aware of them for the possible risks part of the consent form that he had me sign at the end of my visit? Permanent hair loss in irradiated areas, permanent dry mouth, trismus, swallowing and speech problems, scar tissue in my neck and under my chin, susceptibility to cataracts and thyroid issues MAY happen but it also MAY NOT -- right? Oddly, ever since the visit, I've felt the first moments of real calm since my diagnosis two weeks ago. Maybe it was his explanation for why he thinks the disease hasn't spread beyond my neck or maybe it's because there's not as much uncertainty now. Maybe it's because the path ahead is finally clear: 7 weeks of chemo (3 rounds) and RT (35 treatments done every weekday) then 3 more rounds of chemo over three months then, if things go well, a long NPC-free future. In any case, I'm not as anxious as I was before. Something to feel good about as Christmas nears. There's one thing I don't understand though. He said swallowing problems may be part of the long-term effects after RT. I thought the swallowing issues were mostly due to the rawness in the mouth caused by RT and chemo. The problem should resolve itself as new cells grow in the lining of the mouth -- right?. Does RT do something that changes that and, hence, cause swallowing problems? > Thanks for getting back to me so quickly Steph. > [quoted text clipped - 25 lines] > tissue in my neck and under my chin, susceptibility to cataracts and > thyroid issues MAY happen but it also MAY NOT -- right? The dryness will happen. Most of the other will likely NOT. > Oddly, ever since the visit, I've felt the first moments of real calm > since my diagnosis two weeks ago. Maybe it was his explanation for why [quoted text clipped - 12 lines] > the lining of the mouth -- right?. Does RT do something that changes > that and, hence, cause swallowing problems? You can sometimes get scarring of the pharynx from the combination of RT and chemo. Not common, but not unknown. That with the dryness can cause swallowing probs. > > So, was his rundown of the possible side effects just to make me aware > > of them for the possible risks part of the consent form that he had me [quoted text clipped - 4 lines] > > The dryness will happen. Most of the other will likely NOT. Over the holidays, I did some more reading on the possible side effects of RT. I realize that damage to the saliva glands and its after effects is the price I have to pay for a potential cure of my NPC. I'm worried about some of the permanent side effects that I've read from some of the "survivor stories": eating problems, speech problems, nerve/msucle problems, cosmetic problems, etc. People saying that they are lucky that they can retire because they couldn't work after getting their treatment. I'm only 34. I still have to build/re-build a career when this is over. I'm single. I'd like to find a wife and start a family someday. It's going to be hard to do if I can't speak properly or eat properly or function properly. Yes, I definitely want to be rid of NPC but I don't want a Pyrrhic victory. I don't want to be dependent on my family or social assistance for the rest of my days. Part of me is saying that I'm being an over-worried idiot, that the bad survivor stories I've been reading represent the minority of outcomes and the great majority of positive outcomes don't make the Internet because those people are too busy getting on with the rest of their lives. Still, what I'd like to do is arrange another appointment with my radiation oncologist and express my concerns to him. Not the part about my fear of the worst case scenario but the part about me being young and needing to be as whole as possible to accomplish the things I need to accomplish after I beat the cancer. I'd like to ask him if my life after RT is a consideration in my treatment plan or if his only consideration is killing the cancer. I'd like to tell him that I want him to do all that is necessary to kill the cancer but, as much as possible, please try and limit the collateral damage. I'm sure that the philosophy is a given but it'd make me feel better to have gotten it out there. I'd also like some more information on how the RT will work on my case: Will it be old style 2-D RT or 3-D RT just not IMRT? Just exactly how will it work and what other structures (besides my salivary glands) will be at risk? Why exactly is IMRT not appropriate in my case? Moreover, I'm worried that my condition is more serious than they are letting on. As far as I can tell, I'm getting three more rounds of chemo than what is "conventionally" given and my RT seems to be more extensive than what clifto and Chris got. It probably won't effect my outcome one way or another but it would make me feel a heck of a lot better as I head into my treatment. However, I'm ambivalent about asking for such a meeting because (a) I don't want to annoy my oncologist with something he might view as unnecessary and (b) I don't want him to think I don't trust his ability or his judgement. I do, it's just that I want to make sure I've done everything I can to get the outcome that I hope for. I don't want to be sitting around next year kicking myself for not speaking up when I had the chance. Steph, if I was your patient and I asked for a second meeting, would you find it annoying? >> > So, was his rundown of the possible side effects just to make me aware >> > of them for the possible risks part of the consent form that he had me [quoted text clipped - 59 lines] > Steph, if I was your patient and I asked for a second meeting, would > you find it annoying? Not at all, but remember: 1) All of the possible side-effects are rare, except the saliva issue. Most of my cured npc patients get back to their lives 2) The worst side-effect of treatment for a curable cancer is failure to cure..... Nobody gets exactly the same treatment as someone else. Centres vary in policy, and patients vary in need. You just have to trust your onc, but I for one would never be annoyed by a patient wanting to discuss the details a second, third or fourth time. And every onc has "I want him to do all that is necessary to kill the cancer but, as much as possible, please try and limit the collateral damage" at the forefront of his mind. > > Steph, if I was your patient and I asked for a second meeting, would > > you find it annoying? [quoted text clipped - 4 lines] > 2) The worst side-effect of treatment for a curable cancer is failure to > cure..... Thanks for the words of reassurance about side-effects. You are right, the worst case scenario is treatment failure. I want to be cured and I want everything done towards that end. I just don't want to end up in a situation where I'm cured of the cancer but a permanent burden to my family. About the saliva issue, what happens to the majority of your non-IMRT patients in the long-term (one year or so out of treatment)? Do they have no saliva production at all? Do they get back some saliva but not in the quantity and quality they had previously? Do they get back enough to eat and sleep reasonably well? > Nobody gets exactly the same treatment as someone else. Centres vary in > policy, and patients vary in need. You just have to trust your onc, but I > for one would never be annoyed by a patient wanting to discuss the details a > second, third or fourth time. And every onc has "I want him to do all that > is necessary to kill the cancer but, as much as possible, please try and > limit the collateral damage" at the forefront of his mind. For my own peace of mind, I think I will ask for another appointment with my radiation oncologist, just to get some of the details clear in my mind and to reassure myself that he's not being overly-cautious. Friday was the fourth time I'd been to a doctor in three days so I was pretty numb by that point. I was just worried that asking for a second appointment and questioning his treatment plan would make him think that I wasn't fully-committed to going for a cure or that I was being namby-pamby and trying to have my cake and eat it too. Anyway, thanks for answering my question Steph. You have no idea how much you've helped in the three weeks or so I've been on this board. >> > Steph, if I was your patient and I asked for a second meeting, would >> > you find it annoying? [quoted text clipped - 38 lines] > Anyway, thanks for answering my question Steph. You have no idea how > much you've helped in the three weeks or so I've been on this board. Most patients say that their saliva improves over time. I suspect though, that they just get used to it! Most of them carry a bottle of water around. However, despite the dryness issue, most of them get back to normal lives and activities > Most patients say that their saliva improves over time. I suspect though, > that they just get used to it! Most of them carry a bottle of water around. > However, despite the dryness issue, most of them get back to normal lives > and activities Good news! My radiation oncologist called me first thing this morning to tell me that, after reviewing my chart and my scans, IMRT is appropriate for my condition after all. All I have to do is consent to enroll in some study run by the Alberta Cancer Board. It means submitting to more testing (saliva flow rate before, during and after treatment) and answering some questionnaire about my saliva but that's a tiny price to pay if it means I get IMRT! The only thing I'm worried about now is that the study is one of those randomized ones where some people get IMRT and some people do not. I was so overjoyed about the IMRT news, I didn't think of that until later. I'm getting an information package about the study so I'm sure it'll say. I'm also arranging that second meeting with the radiation oncologist (just to talk to him about the details of treatment one more time) so I'll be sure to ask him if the literature doesn't say. Wow, this IMRT news has lifted a huge weight off my shoulders. I was disappointed when he told me last Friday that he didn't think he could use IMRT on me. I was hit even harder by the news a couple of days later when I was having Christmas dinner with my family. The whole time I'm thinking this is the last time we'll be having Christmas dinner without either me struggling to eat with a dry mouth or having a special plate made for me because of dry mouth. It took all I could to not burst into tears during dinner and you're talking about a guy who hasn't cried since the late-1980s! Don't get me wrong, I'm not having problems dealing with my diagnosis, it was just the whole combination of family gathering, Christmas, my condition and uncertainty about the future that formed a perfect storm of emotion that almost overwhelmed me. I didn't even see it coming: One minute I'm listening to the dinner conversation. The next, I'm wondering if I'll be able to manage the simple act of eating turkey without gravy or a baked potato next Christmas then BAM!, a wave of sadness just blindsided me and left me momentarily flummoxed. One other thing, I don't know what it is for others but the system is moving amazingly fast for me. I could have had my mask made today and ready for simulation next week. RT could have started as soon as January 9th. Unfortunately, the dental clinic is closed this week for the holidays so I can't see the dental oncologist until January 3rd at the earliest. I think my wisdom teeth will have to come out even though they haven't poked through so now I'm looking at either January 16th or January 23rd. I'm just saying that, for all the grumbling about our health care system, it seems to be moving pretty fast for me. If it weren't for the Christmas holidays and my individual situation with the teeth, I could have been in treatment within two weeks of my first meetings with the oncologists. Now, getting to the diagnosis was a bit of a long adventure but since being diagnosed, it's been a whirlwind of activity (apart from the first three, four days of silence): CT scans in days not weeks, MRI in weeks not months, etc. > > Most patients say that their saliva improves over time. I suspect though, > > that they just get used to it! Most of them carry a bottle of water around. [quoted text clipped - 11 lines] > people get IMRT and some people do not. I was so overjoyed about the > IMRT news, I didn't think of that until later. Looks like this one... http://www.clinicaltrials.gov/ct/show/NCT00137475 J > Looks like this one... > http://www.clinicaltrials.gov/ct/show/NCT00137475 Yeah, you may be right. And it looks like its non-randomized so I'll definitely be getting the IMRT! Excellent! The first bit of positive news since my diagnosis! Things are starting to turn around. Well, I shouldn't exactly say its the first bit since my prognosis is positive. It's just that the prognosis was delivered in combination with my diagnosis so it wasn't fully positive. Anyway, thanks for finding the link J. You sure know how to find those needles in the huge haystack that is the Internet. I had my head/neck/abdomen/pelvis CT today and have my nasal biopsy tomorrow. Here's hoping the collateral damage from the procedure isn't too bad. This weekend is probably the last one that I can fully enjoy since wisdom teeth extraction is in the cards for next week. I want to be able to say "see you in a few months" to my tastebuds and saliva without too much interference. For the record, to anyone in the future who might want to know what a head/neck/abdomen/pelvis CT entails, it's a piece of cake. The solution they make you drink is mostly bland. There's a bit of an aftertaste after you drink it all down (I had to drink three coffee cups full of it) but it doesn't make you nauseous or anything, there's just a lot of it (not to worry, they give you about 20 minutes to half an hour to put it all down). The dye they inject into you is warm and makes you feel flush for a few moments but, again, it doesn't make you nauseous or anything. The CT isn't a big chamber-like thing so claustrophobia shouldn't be an issue. People with back problems or joint pain might find it problematic to hold still when they are taking the series of pictures but it's only for 30 seconds at the most so the pain should be bearable. The consent form they gave me said that 1 in 200,000 may have a bad reaction to the dye but, since you are surrounded by health professionals while it is being injected, they should be able to successfully treat any reaction right away. > > Looks like this one... > > http://www.clinicaltrials.gov/ct/show/NCT00137475 /quote from that trial/ While our results to date have shown promising preservation of salivary flow, we do not know whether patients treated with IMRT have similar local control rates as those treated with standard radiotherapy. Some investigators have raised concern that by giving a low radiation dose to areas adjacent to the target volume there is a risk of undertreating disease. On the other hand, the IMRT delivered with this protocol (called "simultaneous integrated boost", or SIB) may improve local control rates by delivering the same biologically effective dose in a shorter overall time period (see below). This is a phase I/II trial which seeks to establish the efficacy of IMRT for H&N cancer treatment, and further investigate the relationship between radiation dose to the parotid glands, salivary flow, and quality of life. The specific objectives of the trial are as follows: * To assess the local control rate and survival of patients treated with intensity-modulated radiotherapy using the simultaneous integrated boost (SIB) for regions at high risk of recurrence; * To determine the patterns of failure of patients treated with IMRT+SIB;/quote from that trial/ (see my other post asking Steph and about the treatment failures - MD Anderson webpage) > Yeah, you may be right. And it looks like its non-randomized so I'll > definitely be getting the IMRT! Excellent! The first bit of positive [quoted text clipped - 6 lines] > Anyway, thanks for finding the link J. You sure know how to find those > needles in the huge haystack that is the Internet. Well, I don't know if it is the same one (it's squamous), but I would think they would not be running 2 trials for the same comparison. It's phase I/II measures for safety and efficacy. It's been running for 4 years. I wonder if you can ask them if there were any treatment failures? Yes, it would be nice if you didn't have dry mouth problems, but if you had mets/recurrence, you'd be in a worse mess. Seems to me, just a few weeks ago, the priority was fighting it and getting it all (if possible). Look at the thread name, he said it wasn't appropriate. I wonder if he's agreeing with you, because he's concerned you'll abandon all thoughts of treatment if you don't get it your way (with IMRT). You're the one who'll have to live (or die) from your decision. > I had my head/neck/abdomen/pelvis CT today and have my nasal biopsy > tomorrow. Here's hoping the collateral damage from the procedure isn't > too bad. This weekend is probably the last one that I can fully enjoy > since wisdom teeth extraction is in the cards for next week. Mine were removed oh 30 or more years ago. Good luck with that and with the biopsy today. > I want to be able to say "see you in a few months" to my tastebuds and > saliva > without too much interference. I want to be able to say "see you when a cure has been proclaimed, see you when you get married, see you when you have kids" (etc). J > Well, I don't know if it is the same one (it's squamous), but I would think > they would not be running 2 trials for the same comparison. > It's phase I/II measures for safety and efficacy. > It's been running for 4 years. I wonder if you can ask them if there were > any treatment failures? Thanks for the tip, J. I'll ask him when I talk to him on Tuesday. By the way, if you're reading this Steph, is undifferentiated lymphoepithelial carcinoma the same as undifferentiated squamous cell carcinoma? They are two different things right? > Yes, it would be nice if you didn't have dry mouth problems, but if you had > mets/recurrence, you'd be in a worse mess. Seems to me, just a few weeks [quoted text clipped - 3 lines] > all thoughts of treatment if you don't get it your way (with IMRT). You're > the one who'll have to live (or die) from your decision. I know that he's not just agreeing with me because he called to offer me the IMRT BEFORE I had a chance to express my concerns to him. I'm confident he's basing this mostly on scientific/medical criteria. I've been reading more of the literature on IMRT these past couple of days and it seems like there's general consensus that it is as effective at tumour control as conventional RT. Sure it's a risk, but I think it's a good calculated risk to take. Surely, my radiation oncologist wouldn't offer it to me if he didn't think it would work. I don't know. I'm confronted by so many "what ifs", "this may", "possible but not probables", "rare/uncommon", "not uncommon", etc. that it's hard to think straight sometimes. Doubt and uncertainty all over the place. A month ago, the decisions I was making was on the level of regular Tide or Tide with Fresh Scent. One advantage of participating in the study is that I'll be more closely monitored than I would be if I wasn't. Another team, another doctor and another nurse to watch my situation and give me advice on how to deal with the side effects can't hurt (or do study doctors just observe?). Also, there'll be more follow-up than if I wasn't participating. It can't hurt to have more sets of eyes on me and my condition. I'm leaning towards participating at this point but I won't make a final decision until I talk to the radiation oncologist next week. If I get the inkling that there's a higher risk of treatment failure because of IMRT (because of my neck nodes), I'll probably opt, with heavy heart, for conventional. > Good luck with that and with the biopsy today. The biopsy went fairly well. I didn't feel a thing. The anaesthesia took a while to shake off (I was still "tasting" it the next morning) but it didn't make me sleepy for two and a half days like when I had my neck biopsy. I could smell and taste a hint of blood the morning after but I didn't see any blood. My surgeon said that he found a "small tumour the size of an almond" in my nasopharynx. It hasn't spread into other parts of the head/neck so it looks like I'll be T1. Before he left, he told me: "keep your spirits up because you have a good chance of cure". I also found out that my head/neck/abdomen/pelvis CT scan shows nothing beyond the tumour in the nasopharynx and the lymph nodes in the neck. Another bit of good news. Still, I'm getting a MRI in ten days and a bone scan next Tuesday to further rule out mets. Here's hoping those come back positively as well. >> Well, I don't know if it is the same one (it's squamous), but I would >> think [quoted text clipped - 8 lines] > lymphoepithelial carcinoma the same as undifferentiated squamous cell > carcinoma? They are two different things right? Yes, but it doesn't really affect treatment. One disgnosis blends into the other..... > Anyway, thanks for finding the link J. You sure know how to find those > needles in the huge haystack that is the Internet. I forgot to post this earlier. There's also a Cancer Agency for your Province. (in case you want to bookmark it) http://www.scf.sk.ca/ J > Don't get me wrong, I'm not having problems dealing with my diagnosis, > it was just the whole combination of family gathering, Christmas, my [quoted text clipped - 4 lines] > without gravy or a baked potato next Christmas then BAM!, a wave of > sadness just blindsided me and left me momentarily flummoxed. How did the family and friend deal with the news? > One other thing, I don't know what it is for others but the system is > moving amazingly fast for me. I could have had my mask made today and [quoted text clipped - 4 lines] > though they haven't poked through so now I'm looking at either January > 16th or January 23rd. Araik had an infection. I wonder if they'll put you on (preventative) antibiotic (just before or at the time of extraction), in case your blood counts drop at the beginning of treatment? Now that you've been downstaged, I wouldn't bother asking about the failure rate. It might just discourage you, since some in the clinical trial were Stage 4. I don't know what to do about this new finding about moving the salivary gland. On the one hand, sounds like a good idea, but surgery, at this point, would delay your treatment not to mention anesthetic risks. And don't even know if it's available in Sask. And going over to Alta would require authorization from your provincial health to be reimbursed for the surgery (you'd have to pay upfront), so maybe it's best to just proceed as planned. (I posted it for possibly anyone else who might be going through this and hopefully we'll remember, although by the time some find us, they may already had or be in treatment). After reading Steph's reply(ies) and your updates, I'm confident about the clinical trial and your successful treatment. Happy New Year, CHY, to you and yours ! . J > How did the family and friend deal with the news? My girlfriend went home for the holidays so I haven't told her yet. She's coming back tomorrow afternoon. As for my family, they've been great. I told them on the 29th and they've been nothing but positive and supportive. They are ready to support me and are ready to help me fight. I should have taken Steph's advice and told them earlier because I think it would have made the last couple of weeks easier for me. I think carrying the secret around and not sharing contributed to the wild emotions I felt during Christmas. Anyway, they told me not to worry about anything (money, future, care, driving, day-to-day) because they are going to help me with it. All I have to do is focus on beating the cancer. They told me that, once I beat the cancer, the rest will take care of itself. So, I've been feeling pretty positive these past few days. I still, however, have my negative moments. I worry about being permanently damaged by the treatments (esophagus burns, hearing loss, blindness, neuropathy). I worry about somehow ending up in a situation where my family will have to take care of me permanently. I know that the chances of this happening are small and that, if things go according to plan, I should be mostly all right by this time next year. I think what I need to do is stop reading the survivor stories on the Internet. It's the stories about people needing their G-tubes permanently because their esophagus was burned or how they've lost hearing in both ears or how they are chronically fatigued and unable to work that are getting to me. I try to tell myself that these are probably rare cases but I can't seem to shake the nagging doubt. In the past week, I've added a lot of factors to put into the positive column. Nothing really for the negative but yet I still worry. I hope that this is normal and that I'm not heading into some spiral of negativity and depression. I know that those who recover quickest are the ones who have the best attitudes. I have a good shot at a cure, I think I've got a good medical team, I have a great support network and, apart from the cancer, I'm in good health so I should be positive and not feeling as much apprehension as I am. Maybe I'm just a natural worry wart. I mean, here I am worrying that I'm worrying too much! > Now that you've been downstaged, I wouldn't bother asking about the failure rate. > It might just discourage you, since some in the clinical trial were Stage 4. The only staging information that I got was from the medical oncologist who put me in stage 4 with a N3. The rest, I came up with myself off the information I got from my surgeon and the radiation oncologist. T1 - "small tumour the size of an almond", entirely inside the nasopharynx N2 - 4.7 cm x 2 cm lymph node conglomeration; 2 mm x 2 mm enlarged lymph node at bottom tip of one of my neck muscles (maybe I should ask my radiation oncologist if they picked this up on the CT scan because my medical oncologist felt this one during my initial consult) M0 - so far, scans have shown no distant spread (bone scan and MRI to come) > I don't know what to do about this new finding about moving the salivary gland. > On the one hand, sounds like a good idea, but surgery, at this point, would delay [quoted text clipped - 4 lines] > else who might be going through this and hopefully we'll remember, although by > the time some find us, they may already had or be in treatment). Thanks for finding out this information for me but I think this is too experimental for me to try at this point. Besides, my radiation oncologist and Steph both seem to think that IMRT will be enough to save me enough salivary gland function to have normal eating and sleeping. The literature doesn't seem as steadfast but I trust the guys in the trenches more. > After reading Steph's reply(ies) and your updates, I'm confident about the > clinical trial and your successful treatment. Me too. I'm hoping for a good outcome and a quick recovery. Since I'm getting chemotherapy until June, maybe the Labour Day barbecue dream will be hard to realize but I'm hoping I can fully enjoy Christmas Dinner 2006. I will be done radiation treatments at the end of February/first week of March so, nine months out, I should have recovered some salivary gland function -- right? > Happy New Year, CHY, to you and yours ! Back at you, J. And, once again, thanks for everything! >> How did the family and friend deal with the news? > [quoted text clipped - 37 lines] > not feeling as much apprehension as I am. Maybe I'm just a natural > worry wart. I mean, here I am worrying that I'm worrying too much! You are entirely correct. "Survivorism" drives me wild. The entire program is this: 1: Get your disease properly diagnosed and stage 2: Get an oncologist you trust 3: Get good treatment and get cured 4: Get back to your life > > How did the family and friend deal with the news? > [quoted text clipped - 8 lines] > and not sharing contributed to the wild emotions I felt during > Christmas. I imagine it was a relief for them as well. They knew something was up, but not specific. Might have been weighing on them worrying. > Anyway, they told me not to worry about anything (money, future, care, > driving, day-to-day) because they are going to help me with it. All I > have to do is focus on beating the cancer. They told me that, once I > beat the cancer, the rest will take care of itself. Speaking of money, if your income is not being continued by employer, have you looked into EI sick benefits. I think, but not sure, that the number of XXX (hours) of earnings (and EI deductions) determine whether a person is eligible and how much they receive. If you wait until later and haven't worked during the treatment part, you might not be eligible toward the end of the treatment part. Either way, it's only for a certain amount of weeks, but even at 50?% of regular income, it's better than nothing coming in, especially since you'll still have apartment rent to pay because you'll want to keep your apartment. And why skip something you're eligible for? I think you need a statement of contributions from your employer, which covers the past XXX numbers of months. And a statement from a doctor saying that you'll be temporarily unable to work, during the treatment of your cancer. Unless you feel you can continue to work and will apply for it, if /when you cannot? > So, I've been feeling pretty positive these past few days. I still, > however, have my negative moments. I worry about being permanently [quoted text clipped - 6 lines] > I think what I need to do is stop reading the survivor stories on the > Internet. I think so. Not everyone has access to the internet and/or chooses to put up their stories of cure and no complications > I have a good shot at a cure, I > think I've got a good medical team, I have a great support network and, > apart from the cancer, I'm in good health so I should be positive and > not feeling as much apprehension as I am. Maybe I'm just a natural > worry wart. I mean, here I am worrying that I'm worrying too much! I think you'll settle in, once the treatment starts. > > Now that you've been downstaged, I wouldn't bother asking about the failure rate. > > It might just discourage you, since some in the clinical trial were Stage 4. [quoted text clipped - 26 lines] > February/first week of March so, nine months out, I should have > recovered some salivary gland function -- right? I forget what clifto and Chris said about recovery time or adjustment as Steph seems to think occurs. When I look at the list of conditions and medications here http://www.umanitoba.ca/outreach/wisdomtooth/drymouth.htm I would suspect that half the population of Canada has xerostomia, to one degree or another. I would hope, that if you tolerate the chemo well and are not too plagued with fatigue, that you'll have a wonderful (but careful eating) barbecue Labour Day and yes, fully enjoying Thanksgiving and Christmas dinners! So onward with the dental, the scans, the mask, peg tube? and start of treatment. Thanks for putting up with me. :p J > I forget what clifto and Chris said about recovery time or adjustment as Steph seems to > think occurs. I've got a lot of my saliva back and it's only been a little over three months. Most everyone is saying nine months to full recovery, so it could get better. But again, the caveat in my case is that I've been complaining of relatively dry mouth since 1/2004.  SignatureIf John McCain gets the 2008 Republican Presidential nomination, my vote for President will be a write-in for Jiang Zemin. > > I forget what clifto and Chris said about recovery time or adjustment as Steph seems to > > think occurs. [quoted text clipped - 3 lines] > But again, the caveat in my case is that I've been complaining of relatively > dry mouth since 1/2004. Hi Clifto, Causes of dry mouth (below). Do you drink milk? If so, does it help? Just wondering... J-sipping water :) http://www.mayoclinic.com/health/dry-mouth/HA00034/DSECTION=3 "Dry mouth can be part of the normal aging process. As you get older, your salivary glands may secrete less saliva. Thirst and your perception of thirst also may change. Thirst receptors in your brain become less responsive to your body's need for fluids. But most xerostomia actually is related to the medications taken by older adults rather than to the effects of aging. Among the other causes of dry mouth are: * Cancer therapy. Chemotherapy drugs can change the nature of saliva and the amount produced. Radiation treatments to your head and neck can damage salivary glands, causing a marked decrease in saliva production. * Nerve damage. An injury or surgery that causes nerve damage to your head and neck area also can result in xerostomia. * Other health conditions. Dry mouth can result from health conditions that include the autoimmune disease Sjogren's syndrome, endocrine disorders, Alzheimer's disease, stroke, anxiety disorders and depression. In addition, smoking or chewing tobacco can affect saliva production, aggravating dry mouth. Snoring and breathing with your mouth open also can contribute to the problem. >> I've been complaining of relatively >> dry mouth since 1/2004. [quoted text clipped - 3 lines] > > Do you drink milk? If so, does it help? Just wondering... I've been trying all the things my singing teacher said were causes of phlegm; sugary drinks, dairy, stuff like that. They all help a tiny bit. > J-sipping water :) For the first time in my life, I've been drinking so much water that I've been low on electrolytes. If I get caught without water for too long (e.g. shopping), the voice goes froggy and finally goes out entirely. That's improving, it wasn't that bad before the RT and it's coming back as I heal. But... > * Other health conditions. Dry mouth can result from health conditions that include the > autoimmune disease Sjogren's syndrome, endocrine disorders, Alzheimer's disease, stroke, > anxiety disorders and depression. ...I've had two internists, a nurse-practitioner and two ENTs on this over the period, and it's not just my mouth and throat affected. My eyes are dry, I don't sweat like I used to when wearing a coat in a warm store, etc. etc. So I did a little cramming this morning in anticipation of seeing my internist at 2, and I'm going to escalate the investigation. SignatureIf John McCain gets the 2008 Republican Presidential nomination, my vote for President will be a write-in for Jiang Zemin. > > J-sipping water :) > [quoted text clipped - 13 lines] > So I did a little cramming this morning in anticipation of seeing my > internist at 2, and I'm going to escalate the investigation. hmm... I don't see much here http://www.nlm.nih.gov/medlineplus/ency/article/003219.htm except that women have more sweat glands than men, but men's are more active. Maybe it's aging or maybe you should get an eye exam? J >> ...I've had two internists, a nurse-practitioner and two ENTs on this over >> the period, and it's not just my mouth and throat affected. My eyes are dry, [quoted text clipped - 5 lines] > except that women have more sweat glands than men, but men's are more active. > Maybe it's aging or maybe you should get an eye exam? It is about time for that, but what I'm getting at is that it seems like whatever hit me is affecting every muscarinic function all the time. And no one so far has had any good guesses. So since I have to do some routine blood tests anyway, we scheduled an extra or two. SignatureIf John McCain gets the 2008 Republican Presidential nomination, my vote for President will be a write-in for Jiang Zemin. > >> ...I've had two internists, a nurse-practitioner and two ENTs on this over > >> the period, and it's not just my mouth and throat affected. My eyes are dry, [quoted text clipped - 10 lines] > no one so far has had any good guesses. So since I have to do some routine > blood tests anyway, we scheduled an extra or two. Hi clifto, well I'm torn on this one. I think a history of smoking might cause that (aging skin?), but I'm not sure. There are some things, on the various webpages that I posted, for which there are no tests, Then there's Sjogren's - they can do eye tests or see other changes in your eyes. <http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Sjogren's_syndrom e?OpenDocument> Sweat glands are also mentioned. It sure can be a nuisance having to drink water all the time, more bathroom breaks, eh? In addition, I suppose you always have to make sure you don't get dehydrated / stuck somewhere where it's too hot and you don't access to water. I'm sure it's a nuisance for people who work on computers and aren't allowed drinks nearby or assembly lines, where breaks are only allowed at specific times (etc). The other point I wanted to make is do not underestimate Sjogren's. Apparently it can be systemic or that seems to be what happened to a young female on the East Coast of Canada, but I think we'd have to continue this on another newsgroup. J-interested >> what I'm getting at is that it seems like >> whatever hit me is affecting every muscarinic function all the time. And [quoted text clipped - 6 lines] > Then there's Sjogren's - they can do eye tests or see other changes in your eyes. > <http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Sjogren's_syndrom e?OpenDocument> There's a blood test for it, too. Doc put it on the list of blood work to be done. > It sure can be a nuisance having to drink water all the time, more bathroom breaks, eh? Couple that with urinary retention, and I'm up no less than every 1-1/2 hours throughout the night, sometimes every half hour. > In addition, I suppose you always have to make sure you don't get dehydrated / stuck > somewhere where it's too hot and you don't access to water. I carry half-liter bottles with me wherever I go. :) > The other point I wanted to make is do not underestimate Sjogren's. Apparently it can be > systemic or that seems to be what happened to a young female on the East Coast of Canada, but > I think we'd have to continue this on another newsgroup. I wouldn't be fond of having it, but I've got to figure out what's really happening one way or the other. SignatureIf John McCain gets the 2008 Republican Presidential nomination, my vote for President will be a write-in for Jiang Zemin. > >> what I'm getting at is that it seems like > >> whatever hit me is affecting every muscarinic function all the time. And [quoted text clipped - 8 lines] > I wouldn't be fond of having it, but I've got to figure out what's really > happening one way or the other. Good luck with that, clifto. See the plugs (for the eyes) mentioned here http://www.lasermyeye.org/encyclopedia/punctalplugs.html If it turns out there's nothing systemic, I was wondering if : (and this requires more research) a) salivary glands (or spliced/healed/functional salivary gland) can be donated and transplanted from a close relative? b) patches of dermal layers (including sweat glands) can be transplanted from a (or some) close relative. I thought I had a really good diagram link of the skin layers, but I can't remember at the moment, where I saved it (or posted it). More later, if I find something. Best, J >> I will be done radiation treatments at the end of >> February/first week of March so, nine months out, I should have [quoted text clipped - 13 lines] > treatment. Thanks for putting up with me. :p > J So you are roughly two months ahead of where I was at this time last year, so it makes comparison easier than it could be. You should be fine by Labor Day for eating almost anything, but don't count on it being barbecue. You will have to relearn hot pepper. But I forced myself (with tears in my eyes) and I am able to tolerate the burn again and I would say my saliva is about 100% except when I first wake up. Cause and effect? I still drink a lot of water with food and bread still chokes me a little, but as I sit here snacking on some ginger snaps (no ginger wine though), my mouth is salivating as well as it ever has. And this is a rch over nine months since the end of treatment. So there is plenty of hope for you. Other than that, I have no real advice for you today, but patience. And J, it is never "putting up" with you. We are thankful for all your advice and help. > >> I will be done radiation treatments at the end of > >> February/first week of March so, nine months out, I should have [quoted text clipped - 21 lines] > And J, it is never "putting up" with you. We are thankful for all your > advice and help. Thank you Chris (for both) and thanks to clifto. Goodness me, the timing couldn't have been bdggdf.. All 4 of of you here, around the same time. Thank you. If you don't mind? Were you able to continue working? Sounds to me that Araik's hurrying his feedings (for some reason) - well, he sounds uncomfortable with evening feedings (for sleep). Should he feed in evening and sleep sitting up? Any tips for him? Please post to him. Use your other newsreader if you can't see his post from last evening. Thanks, J . >> And J, it is never "putting up" with you. We are thankful for all your >> advice and help. Yeah, what Chris said. > Thank you Chris (for both) and thanks to clifto. > Goodness me, the timing couldn't have been bdggdf.. Well, glad it was bllc. :) SignatureIf John McCain gets the 2008 Republican Presidential nomination, my vote for President will be a write-in for Jiang Zemin. > >> And J, it is never "putting up" with you. We are thankful for all your > >> advice and help. [quoted text clipped - 3 lines] > > Thank you Chris (for both) and thanks to clifto. > > Goodness me, the timing couldn't have been bdggdf.. That was supposed to be "better" <g> > Well, glad it was bllc. :) lol, now I don't know what word you mean. J >> > Goodness me, the timing couldn't have been bdggdf.. > [quoted text clipped - 3 lines] > > lol, now I don't know what word you mean. I typed it one row down like you did with "better". SignatureIf John McCain gets the 2008 Republican Presidential nomination, my vote for President will be a write-in for Jiang Zemin. > >> > Goodness me, the timing couldn't have been bdggdf.. > > > > That was supposed to be "better" <g>> > > Well, glad it was bllc. :) > > > > lol, now I don't know what word you mean. > > I typed it one row down like you did with "better". who knows what happened. I started off with the right letter. <g> OK now I got it, but I had to read your explanation twice. J From: "J" <studras@anon.inv> Newsgroups: alt.support.cancer Sent: Tuesday, January 03, 2006 3:36 AM Subject: Re: New DX NPC: IMRT Available But Not Appropriate <skipped> > Sounds to me that Araik's hurrying his feedings (for some reason) - well, > he [quoted text clipped - 5 lines] > Thanks, > J Gossip, gossip :-) So, if I don't browse through the other messages, I'd not know that somebody cares about me and even give me advices. Thanks! That's the same mystery and disappointment that my posts are being processed in a special way by newsservers. Once more, "why me?" and "move on". 1. "Araik's hurryng his feeding(for some reason)": OK, I'll open "the secret" : feeding yourself through tube far from being fun; So, if there is a chance to speed the nasty process, then as fast as good. The nurses say it's not matter as long as you have your daily calories; And, thanks God, I still tolerate the speedy "feeding" as normal. I don't know, may be it will change after my upcoming chemo? Let's hope no. 2. "Well, he sounds uncomfortable with evening feedings (for sleep). Should he feed in evening and sleep sitting up?" That what I am trying to escape with "speedy feeding" : In hospital bed, that was OK, but at home you have to make 45gradus up your back and head when you feed yourself at night and it's not easy task; Also, the machine is noisy; So you are deprived from your 8 hour normal sleep that's very important for healing process. That's why I am trying to do all feeding at day time as long as I can tolerate it. Thanks, "J", from hearth; You are doing so nice job here, alas, you don't have your real name. Regards, Araik Margarian. http://journals.aol.com/aramargar1/MyAmericanDream/ P.S. I remember reading a fiction once about an island were the most private thing was to feed oneself and eating in public was one of the most embarrasing things for one. Now I'd like to reread it if I can find it. Now I can guess that the island was inhibited with G-Tubers :) > Gossip, gossip :-) > So, if I don't browse through the other messages, I'd not know that > somebody cares about me and even give me advices. Thanks! > That's the same mystery and disappointment that my posts are being > processed in a special way by newsservers. Once more, "why me?" and "move > on". I don't think it is singling you out. I think it has more to do with the intricacies of USENET. There really is no one place of USENET. You may pick it up from one server, but if you look at each message's full headers, the first one will be the bangpath. The bangpath is the route each particular message takes to get to your server. Every message is different - even two different messages from me to you might have two different bangpaths. Everyone that handles it from the originating server to your server appends their name behind a bang -> ! . Some still chop the eighth bit, some mechanically truncate at white space or after the --. Since we all use the web now, we forget how it used to be. Back in the UUCP days part of the deal of getting news was you had to allow other people to feed back through you too. But some news still feeds that way, and you will never even know it happened. So it isn't you, its just the luck of the draw. > P.S. I remember reading a fiction once about an island were the most > private thing was to feed oneself and eating in public was one of the most > embarrasing things for one. Now I'd like to reread it if I can find it. > Now I can guess that the island was inhibited with G-Tubers :) I got over being shy about PEG feeding after a while. In fact when I went back to work, I would deliberately shock people by feeding in my office. If you come in my office, you get what you get. "Hey it's 9:30, that's my feeding time. Gotta do this five times a day, sorry". I'd just feed the tube out through the front of my shirt and hook up the syringe. Oh, that reminds me of this message's hint, to whit: get some good tape to anchor the tube with a small loop out of the stoma that allows you to change the dressing without taking the stress loop off the tube. Change it less often. Maybe every few days. Make another loop at the top of your chest as far as the tube will reach and make that one not stick in the middle (fold tape or double tape a small section or just pull it up in the middle and spoil the sticky) But the point is for the capped end of the tube to have a holder where it can be placed when not in use. The tube can be unholstered and replaced multiple times. Johnson & Johnson waterproof tape is a good choice for this and will let you shower. Change both these loops on different days to minimize the hassle of trying to position it right. Everyone that handles it from the originating server > to your server appends > their name behind a bang -> ! . I am out of practice. They prepend their name in front of the others.For example, your last message path looks like this to me, but to everyone else, it will be different. Path:border1.nntp.dca.giganews.com!nntp.giganews.com!news.moat.net!newsfeed.gamma.ru!Gamma.RU!newsfeed.media.kyoto-u.ac.jp!nx02.iad01.newshosting.com!newshosting.com!newspeer.monmouth.com!chiapp19.algx.com!allegiance!news-out.spamkiller.net!spool6-east.superfeed.net!spool6-east.superfeed.net!not-for-mail I get my news from Giganews, but your message has been to Russia more recently than you have. > Gossip, gossip :-) > So, if I don't browse through the other messages, I'd not know that somebody [quoted text clipped - 3 lines] > Thanks, "J", from hearth; > You are doing so nice job here, alas, you don't have your real name. That's just the way it is :p > P.S. I remember reading a fiction once about an island were the most private > thing was to feed oneself and eating in public was one of the most > embarrasing things for one. Now I'd like to reread it if I can find it. Now > I can guess that the island was inhibited with G-Tubers :) Never heard of it, but I'm glad you're sounding chipper. :) I do care about you. J I am Canadian, too. And I agree with you, things moved pretty fast for me once I had the diagnosis. All the tests were done within days. > "CHY" <boshu22@yahoo.com> wrote in message > > I had my first meeting with the radiation oncologist this morning. He [quoted text clipped - 47 lines] > We treat only a minority of out npc patients with imrt. You have to trust > your onc, I think Steph, I'm concerned he won't get enough coverage with IMRT. If it was you with the cancer, with the above description, which would you pick for you? J http://www.bcm.edu/oto/grand/080599.html With the issue of whether to treat neck ipsilateral to disease or to treat both sides of the neck, the M.D. Anderson, as well as other sources, also favors treating bilateral or both sides of the neck. Analysis of the cases from M.D. Anderson from 1948 to 1980 show most treatment failures happened in patients receiving radiation to the neck as their only therapy, and occurred in patients treated only to the ipsilateral side of the neck. These patients had a 46% recurrence versus a 14% recurrence when both sides of the neck were included. >> "CHY" <boshu22@yahoo.com> wrote in message >> > I had my first meeting with the radiation oncologist this morning. He [quoted text clipped - 67 lines] > were > included. If I trusted my onc, I'd do what he advised. > "J" <studras@anon.inv> wrote in message > [quoted text clipped - 3 lines] > > If I trusted my onc, I'd do what he advised. You'd plan your own treatment. J >> "J" <studras@anon.inv> wrote in message >> [quoted text clipped - 7 lines] > You'd plan your own treatment. > J No I wouldn't. The physician who treats himself has a fool for a patient and an idiot for a doctor.......... >> "CHY" <boshu22@yahoo.com> wrote in message >> > I had my first meeting with the radiation oncologist this morning. He [quoted text clipped - 67 lines] > were > included. If you are using IMRT, it makes no sense not to treat both sides of the neck > "J" <studras@anon.inv> wrote in message > > > Steph, I'm concerned he won't get enough coverage with IMRT. > If you are using IMRT, it makes no sense not to treat both sides of the neck thanks for answering my ?. J > Steph, I'm concerned he won't get enough coverage with IMRT. > If it was you with the cancer, with the above description, which would you > pick for you? I think what changed in between my first meeting and the phone call from the radiation oncologist was that there was more information from my CT scan. My medical oncologist measured my lymph nodes from the outside using a tape measure and determined the 7 cm by 2 cm. My radiation oncologist told me that the CT scan showed the lymph node congolomeration was more on the order of 4.7 cm by 2 cm. So that put me back into N2 not N3 and Stage III and not Stage IV. While the fact that my medical oncologoist and radiation oncologist can't seem to agree on my staging is disturbing, I think CT is the more accurate determination of size -- right? Maybe the medical oncologist was overestimating or maybe he was thrown by the swelling from my incisional biopsy? Anyway, my radiation oncologist assured me that there would be no difference in disease-killing effectiveness between IMRT and conventional RT. It would be just as effective. Given that he's been pushing the system to get me in as soon as possible, I'm confident that he's got my best interests at heart. I'm sure that he wouldn't offer me the IMRT if he thought I'd be better off with conventional RT. >> Steph, I'm concerned he won't get enough coverage with IMRT. >> If it was you with the cancer, with the above description, which would [quoted text clipped - 14 lines] > was overestimating or maybe he was thrown by the swelling from my > incisional biopsy? CT is better. Measuring nodes under skin and fat is unreliable > Anyway, my radiation oncologist assured me that there would be no > difference in disease-killing effectiveness between IMRT and > conventional RT. It would be just as effective. Given that he's been > pushing the system to get me in as soon as possible, I'm confident that > he's got my best interests at heart. I'm sure that he wouldn't offer > me the IMRT if he thought I'd be better off with conventional RT. You have to trust him > CT is better. Measuring nodes under skin and fat is unreliable Of my internist, the biopsy surgeon, the radiation oncologist and the chemo oncologist, it was the chemo guy (who saw me last) who first spotted my lymph node swelling. SignatureIf John McCain gets the 2008 Republican Presidential nomination, my vote for President will be a write-in for Jiang Zemin. >> CT is better. Measuring nodes under skin and fat is unreliable > > Of my internist, the biopsy surgeon, the radiation oncologist and the > chemo > oncologist, it was the chemo guy (who saw me last) who first spotted my > lymph node swelling. Didn't the others examine you? > "clifto" <clifto@clifto.com> wrote... >>> CT is better. Measuring nodes under skin and fat is unreliable [quoted text clipped - 5 lines] > > Didn't the others examine you? Yes, but... first, I have a 19-1/2" neck from lifelong bruxism; more than one doctor has told me the thickness of my neck makes it hard to discern the structures there. Second, I believe the nodal involvement was just barely starting around that time. By the time the chemo guy felt it and I mentioned that to the others, they could feel it as well. Add to my normal thick neck the thick fat pad that developed underneath my jaw, and my internist at one point couldn't find my cricoid cartilage. SignatureIf John McCain gets the 2008 Republican Presidential nomination, my vote for President will be a write-in for Jiang Zemin. J wrote: > If you don't mind? Were you able to continue working? > Sounds to me that Araik's hurrying his feedings (for some reason) - well, [quoted text clipped - 4 lines] > Thanks, > J I don't know if that first was a general question or addressed to Araik, but I'll answer for me anyway. I started with every intention of continuing work hoping that would give me a crutch to keep focused on. That lasted one day until I realized it was going to take all my time getting to and from treatments and waiting at the chemo clinic every day for my amifostine and being infused. There was hardly enough time to do it all, especially when I added calling insurance companies and the staff benefits bureaucrats at work. It was like having a full time job! Araik, It sounded to me also like you are rushing your feeding. Five minutes isn't much time. I tried using the plunger on the syringe for a couple of days, but it was messy, and I would always have it pop out at the end with a jerk as I removed the plunger to refill it. And sometimes it would separate the hose from the syringe and it would all run out (of the syringe and me too)all over my shirt, pants, chair and sometimes keyboard. Pouring and letting gravity do the work was much slower, but not as much trouble, and much cleaner. I even got to the point where I could do it and read the computer at the same time as I waited as gravity did its thing. It even seemed more civilized. I think slower is better. As my mother used to say "Don't wolf you food". Of course, my smartass daughter also told me "Don't talk while you're eating". My last feeding was generally between four and five in the afternoon, so it didn't affect my evening sleep. But my early morning would would make me uncomfortable as I tried to go back to sleep. I would fight to avoid the belch that would start the events that would send the whole thing up through the throat I was trying so hard to protect. A recliner may help a bit, but I liked resting on my opposing side more for some reason. |
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