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Medical Forum / Diseases and Disorders / Cancer / January 2008Hark ! Roll Call to alt.support.cancer
Hark ! Roll Call to the cancer newsgroups. If you or a loved one have (or had) breast or prostate cancer, please check in on the relevant newsgroup. alt.support.cancer.breast or alt.support.cancer.prostate I am sure they would be pleased to hear from you. For other types of cancer, please check in on alt.support.cancer If it's a current cancer, please state the type and stage (where it has spread, if applicable). Date of diagnosis and country may be helpful. If it's a past occurence, of you or a loved one, tell us how things went A few words about a friend, family member or loved one, who passed away from it, okay - let's hear it. Date of diagnosis (approximate year) and country may be helpful. alt.support.cancer was created in 1992 There's usually an oncologist on alt.support.cancer who helps anwer questions. Please pass this message on to (English-speaking) friends, relatiives, other newsgroups and newsgroupies, forums (etc). If some don't know how to access us, they may use a free news feed, by putting news:aioe.org in the "news" section of the settings of their email program. Then saving that. Then selecting that newsfeed, usually (a folder) along the left side, and looking for the (relevant) newsgroup and selecting it; Downloading headers and joining the (relevant) newsgroup. Looking forward to hearing from you all. J Well, thanks, J., I think I will. Uncle Sally here in paradisical Chiang Mai, northern Thailand, amidst cool dry weather in the mid-to-upper 80'sF range days, down to mid-sixtiesF or so at night. Lots of bright sun. Many flowers. http://www.weatherunderground.com/cgi-bin/findweather/getForecast?query=chiang+mai Veteran of first-time lower tongue cancer (SQCC), 3 cm. primary treated with chemo and radiation successfully this year. Last chemo/rads in May this year. Still have no real sense of taste, and still no "real" natural appetite. My diet still consists of Soy Milk (a commercial UHT Thai brand with some whole milk solids for increased smoothness) and Nestle Nutren Optimum powder supplement. Soft steamed white fish every other day or so. Yet my weight is back up to its "normal" 200 lbs. : so I'm hardly malnourished. It is interesting to me that I am not in any psychological distress about the mono-diet I'm on, or actively "missing" other foods I used to value so much (such as spicy Thai food). The oral hypersensitivity to salty, sour, spicy, peppery is still there, ameliorated only slightly six months after treatment. Subjectively I experience occasional flashes of what I call "food memories" when I smell delicious food (my sense of smell has always been very keen). These "flashes" come complete with vivid memories of taste, but they are (subjectively, again) like kind of watching a movie rather than being "in" the movie. My hypothesis is that some neural circuitry in the higher levels of processing taste input has been "re-wired," and, while that is a "dubious" hypothesis (wish I could talk to Jonathan Sacks, M.D. about it), I entertain it, and it entertains me :) My friends (one of whom is a doc) are concerned about possible lack of fiber in my diet, but I am not suffering from constipation. Some days I do not have a bm, but when I do, they seem "natural" (yuck). The oral yeast infection has stabilized at a low-level which seems impossible to get rid of ... and I'm not taking any more courses of anti-fungals. More importantly, for me, in terms of quality of life, I'm back to within 90% of my strength, stamina, aerobic fitness, etc. pre-cancer through heavy gym work-outs. And these work-outs are no longer followed every two or three times by periods of exhaustion. The most salient real-world issue for me right now has to do with becoming used to wearing dentures. I hate them. I can't eat worth a damn with them. I find Polident adhesive strong and powerful, useful in social situations where I am doing story-telling, but a disaster to get rid of from the gums when I remove the dentures. I have some Biotene adhesive for dry mouths, and that works well, but is not as reliably strong and enduring as the Polident. Any tips from you "denture masters and mistresses" out there. By the way, I miss Isi, and wonder what has happened with her. A very happy Holy-Days Season to you and your familes ! May it be a time of "healing" in ever possible sense of that word. Special blessings and warmth to those of you whose tireless efforts make this a great group : particularly J., Alex, Steph, FiggerToes, Janet Wilder, BetsyB, and so many more of you ... Let us all, in the words of one "famously attituded" member of our group, continue to "kick Cancer's a.s" this year and next ! regards, Uncle Sally On Dec 17, 6:02 am, "Uncle Sally" <uncleSa...@auldUncleSally.com> wrote: > Well, thanks, J., I think I will. > [quoted text clipped - 61 lines] > > regards, Uncle Sally Merry XMAS to all....currently escaped the snow and now looking at the inviting Atlantic Ocean but I will be home for XMas. Overall things are going well, going to make our last college payment and then will have that monkey off our back. I have an oncologist visit that is overdue this month. But I have had a busy medical year with visits and surgery so I will be a late. Have a wonderful holiday, hope for a very healthly year for all. Alex > The most salient real-world issue for me right now has to do with becoming > used to wearing dentures. I hate them. I can't eat worth a damn with them. I [quoted text clipped - 3 lines] > that works well, but is not as reliably strong and enduring as the Polident. > Any tips http://www.eclipse.co.uk/moordent/newdentures.htm Includes "If your mouth is dry, using an artificial saliva or sucking on a piece of ice may improve the seal. It is possible to have dentures made which have a reservoir of artificial saliva which is slowly released and this helps maintain a seal." http://www.denture.co.uk/consum/care3.htm http://www.denture.co.uk/consum/care4.htm Implants: http://www.yourdentistryguide.com/implants/ http://www.yourdentistryguide.com/implant-procedures/ http://www.yourdentistryguide.com/bridges/ When I was waiting for my appointment, last, I saw posters about them and asked questions. They can be put in, in simgles or sets. The poster I was looking at was a set of 3 So I was thinking that 2 sets of 3 (lower) at the front and 2 sets of 3 (upper) at the front combined with "partials" for the back and side teeth could be done and the partials could be metal or plastic which is less expensive. They put a little metal hook on the "partial" which hooks to the implanted (sturdy) tooth (at each end). I thought metals are more expensive because they last longer, so no saving with the "plastic " type, but I asked a friend and she said that her metals usually have to be changed every few years regardless. So what I am saying is that the implant sets would be expensive but could be combined with the "plastic" types to be less expensive (total) and still last the same amount of time. In our country, dentists do the fittings then send the mold (not mould) out to a denturist to make them, so dentists are more expensive because they build a profit over and above. Adjustments or re-does are free (for a while) Whereas, in our country, going straight to the denturist is usually ~30% less expensive (as long as you don't pick a "quack" who does a cheap mangle job). Eliminate the middle man. Adjustments or re-does are free (for a while) Hopefully you find something helpful in the above. J J., Thanks very much for your detailed comments, and the links on dentures and implants ! At the point I am two years beyond treatment for my tongue cancer without a recurrence, I'll consider looking at implants, but they are expensive, even in Thailand. Merry-Ho-Ho-Ho ! best, Uncle Sally > J., Thanks very much for your detailed comments, and the links on dentures > and implants ! [quoted text clipped - 6 lines] > > best, Uncle Sally Hello US, Yes, implants are expensive. I see a long life for you - it's in your lifeline in your right palm. <grin> 2 years? Did I misunderstand? You were having RT and chemo, March , this year. Was that a recurrence in the lymph nodes? Me - puzzled PS Thanks for the link about where you live. >> J., Thanks very much for your detailed comments, and the links on dentures >> and implants ! [quoted text clipped - 17 lines] > > PS Thanks for the link about where you live. I think he meant that he'll think about it after two years. I'm not sure implants are in order for someone who has had radiation to the jaw. My oncological dentist doesn't want my regular dentist to do anything below the gum line without consulting him first. Patients who have undergone head and neck radiation must be very conscious of radiosteonecrosis (I probably spelled this all wrong) or "dead jaw" Many H&N rad patients find themselves in hyperbaric chambers with root canal. H&N patients might look for partial plates made of plastic rather than with metal bands which can irritate.  SignatureJanet Wilder Bad spelling. Bad punctuation Good Friends. Good Life > >> J., Thanks very much for your detailed comments, and the links on dentures > >> and implants ! [quoted text clipped - 19 lines] > > I think he meant that he'll think about it after two years. TSH too high + t'other problems = dull brain. I read "at this point I am two years beyond treatment for my tongue cancer " Aplogies. > I'm not sure implants are in order for someone who has had radiation to > the jaw. My oncological dentist doesn't want my regular dentist to do > anything below the gum line without consulting him first. Good advice? but I thought that (the risk of) osteonecrosis is minimized with IMRT? > Patients who have undergone head and neck radiation must be very > conscious of radiosteonecrosis (I probably spelled this all wrong) or [quoted text clipped - 3 lines] > H&N patients might look for partial plates made of plastic rather than > with metal bands which can irritate. I think he has full dentures, top and bottom. I don't know if plastic or metal. My sources tell me that 1) plastic is better because dentures need replacing every few years. (well, I get hum or haw from dentists on the metals....friends say their metals usually need replacing every few years. Planned obsolescense? (sp?) 2) plastic less expensive 3) plastic easier to make adjustments, as the mouth changes, and as you pointed out metal bands can irritate. So too, loose dentures of either type. Not to mention falling out, when bending over. On the other hand, my sources tell me, having full set is best done at one time AND despite this, the lower can be perpetual problem. The upper sticks to the roof of the mouth. No place for the lower to stick. Thanks for pointing out my error (or errors). Again, apologies. J > > At the point I am two years beyond treatment for my tongue cancer without a > > recurrence, I'll consider looking at implants, but they are expensive, even [quoted text clipped - 4 lines] > Was that a recurrence in the lymph nodes? > Me - puzzled Hi, J, read carefully - he says at the point (when), not at THIS point...I read it wrong the 1st time through too. Time does fly, but it has NOT been 2 years! Fig > J., Thanks very much for your detailed comments, and the links on dentures > and implants ! [quoted text clipped - 6 lines] > > best, Uncle Sally I have a dental implant, it was a very easy procedure ( easier than a root canal or extraction). Dental implants stop the jaw from shrinking which is a normal response when you don't have teeth in a jaw. I have a hard time remembering which on is the implant. Yes, it does cost more money but considering I will never have to have an alignment due to bone loss, never have to worry about loosing my dentures I would in the long one that the implant would be cheaper. Good luck with whatever you decide. Now I am on my way back to the cold! J wrote in alt.support.cancer: > Looking forward to hearing from you all. still hanging in there. started carbo/taxol last friday, plenty of neuropathy in the legs and fingers, having trouble walking (and typing) but other than that not too bad. hopefully can have a couple of beers at xmas. havagood1 all > J wrote in alt.support.cancer: > [quoted text clipped - 5 lines] > > havagood1 all Oh, I hope you can have some beers. I've love some too. combat or minimize chemo-based neuropathy http://www.chemocare.com/managing/numbness__tingling.asp Best 2u2, Jacques J > J wrote in alt.support.cancer: > [quoted text clipped - 5 lines] > > havagood1 all Beer good for neuropathy,Jacques? Inquiring minds want to know. I've saved long thin things to hold in mouth and press on down keys (scroll through posts), in case I ever need them and it works. Check in the kitchen maybe for something that might work, if you're having trouble wading through those other posts. Keep in touch, please. J I certainly second US's post thanking J, Steph, et al for your tireless efforts in keeping this newsgroup alive and giving us a voice. I also miss you Isi whereever you are. Please know that I love you and keep you in my prayers. May God bless you and keep you in His care always. Concerning myself: (NSCLC, stage IB, pneumonectomy followed by chemo, two years out). Most recent CT is NED - Thank you God, thank you for all of my friends who pray for me every day. Merry Christmas & God bless you all. Tracey (Washington State) > I certainly second US's post thanking J, Steph, et al for your tireless > efforts in keeping this newsgroup alive and giving us a voice. [quoted text clipped - 9 lines] > > Tracey (Washington State) NED best acronym in the world. <big smile> Have a wonderful Christmas, Tracey and thanks for being here. J Figgertoes here having a rather tropical holiday experience. It's been in the high 70s here in The Woodlands, TX. Tomorrow I drive to Shreveport LA for a family Christmas (never been there). When I left home a week ago, we were shoveling snow. Folks are running around here in shorts & sandels - ho ho ho! Thinking of all of you & wishing you a wonderful holiday. I miss isi too. Sending loving thoughts your way, isi! Fig > Figgertoes here having a rather tropical holiday experience. It's > been in the high 70s here in The Woodlands, TX. Tomorrow I drive to > Shreveport LA for a family Christmas (never been there). When I left > home a week ago, we were shoveling snow. Folks are running around > here in shorts & sandels - ho ho ho! Lucky you - you deserve it. > Thinking of all of you & wishing you a wonderful holiday. > > I miss isi too. Sending loving thoughts your way, isi! Ditto. I like to think her computer got stolen after leaving it behind. Or ISP not possible out where she lives (rather than the alternative). Have a happy and safe holiday, Fig. J I have been using the group as a resource but this is my first post here. Three months ago I had a kidney remove that had cancer on it. I was very lucky in that it would appear they caught it before it spread outside of the one Kidney, time will tell. After reading some of the stories of what other people have gone through with their insurance I realize how lucky I have been there as well, we have Kaiser and they have been great through the whole thing. I did just have another surgery a week ago to fix a hernia from the first surgery, but given what others have gone through I figure I have gotten off pretty light. On the plus side I am enjoying light a lot more now, the cancer really made me realize I only have so much time on this earth and I am going to enjoy it while I am here. To all that are still fighting their cancer my best wishes. Scott > I have been using the group as a resource but this is my first post > here. [quoted text clipped - 18 lines] > > Scott Welcome, Scott. I'm pleased to read they caught yours early. I know there's lurkers, but sometimes doubt. Thanks for your post and Merry Christmas. J I was diagnosed with non-Hodgkins lymphoma, stage 1B. 4 rounds of chemo (CHOP+R) and 5 weeks of radiation. Last week I had my 5 year appt with my oncologist - still NED. It's hard to believe that I've come to this point (and wonderful of course). I will be seeing her only once a year from now on. I wish everyone happy holidays and the strength to get through whatever comes your way. Carla > I was diagnosed with non-Hodgkins lymphoma, stage 1B. 4 > rounds of chemo (CHOP+R) and 5 weeks of radiation. Last [quoted text clipped - 7 lines] > > Carla Congratulations! SignatureJanet Wilder Bad spelling. Bad punctuation Good Friends. Good Life >> I was diagnosed with non-Hodgkins lymphoma, stage 1B. 4 >> rounds of chemo (CHOP+R) and 5 weeks of radiation. Last [quoted text clipped - 9 lines] > >Congratulations! Thanks! > I was diagnosed with non-Hodgkins lymphoma, stage 1B. 4 > rounds of chemo (CHOP+R) and 5 weeks of radiation. Last [quoted text clipped - 7 lines] > > Carla Wonderful news, Carla ! What'll you do instead of the checkup appointments? I highly recommend a massage, a morning at the sauna, getting your hair and nails done or a chocolate treat. Or all of them. <smile> Happy Holidays to you, Carla and thanks for being here. J >> I was diagnosed with non-Hodgkins lymphoma, stage 1B. 4 >> rounds of chemo (CHOP+R) and 5 weeks of radiation. Last [quoted text clipped - 15 lines] >Happy Holidays to you, Carla and thanks for being here. >J Thanks, J. Hmm, I've never had a massage - I've heard it's better than - well, other things that are also nice :) I've been letting my hair grow for Locks of Love. I'm about ready to let it go - perhaps in January. And then maybe a wild and crazy color to go with the new cut.... Carla > >> I was diagnosed with non-Hodgkins lymphoma, stage 1B. 4 > >> rounds of chemo (CHOP+R) and 5 weeks of radiation. Last > >> week I had my 5 year appt with my oncologist - still NED. > >> It's hard to believe that I've come to this point (and > >> wonderful of course). I will be seeing her only once a year > >> from now on. Sorry, I'm late replying to this. > >Wonderful news, Carla ! > >What'll you do instead of the checkup appointments? [quoted text clipped - 8 lines] > Hmm, I've never had a massage - I've heard it's better than > - well, other things that are also nice :) Well, massage is not _that_ good ! <smile> > I've been letting my hair grow for Locks of Love. I'm about > ready to let it go - perhaps in January. And then maybe a > wild and crazy color to go with the new cut.... Sounds like fun. Wishing you a fun, happy and healthy New Year, Carla. J Hello J; Still 2 weeks ago I felt much better after around 2 years of Radio/Chemo therapy for NPC. 10 days ago suddenly I had gross hematuria, mild pains in lower left abdomen and rushed to emergency room. They did urin test and CT Scan(without dye) and diagnosed that it's Urinary Tract Infection, prescribed an antibiotic (levaquin) for 10 days (though in report they wrote that urinary leision is possible; they found WBC esterase and "lesion in the T7 vertebral body" and didn't found stones.) Next day I went to my doctor and had blood test. Then I got appointment to a urologyst who made test with cystoscop (It was so painful :) and said that bladder is OK. I had the antibiotic for 10 days. I didn't have any visible hematuria after the incident, but the pain is being intensified and then becoming mild; It comes and goes (it's almost constant and not sharp), and also radiates around - sometimes to back; I have some feelings in my feet; - sometimes cold, sometimes weakness; I feel very tired this days; remincence the days after chemo/radio. Yesterday I went to take the blood test report which shows leicocyts and glucose substantially low; My doctor went to maternity leave. I did a lot of search in internet to the symptoms and numbers, and am very confused. I can't understand what's going on. It's Holiday season and hard to get doctors.May be something serious, may be 2-3 different small things happen same time? But if it were UTI, I should not have these other symtoms persist so long after 10 days antibiotics. Do you have any idea? Happy past and coming holidays! SignatureRegards, Araik Margarian http://journals.aol.com/aramargar1/MyAmericanDream/ I forgot to add that the pain changes with my position and movement.??? SignatureRegards, Araik Margarian http://journals.aol.com/aramargar1/MyAmericanDream/ > Hello J; > Still 2 weeks ago I felt much better after around 2 years of Radio/Chemo [quoted text clipped - 22 lines] > > Happy past and coming holidays! Same to you, Araik. :) Guesses: Kidney Stones: 90% confidence http://en.wikipedia.org/wiki/Kidney_stone Bones can be affected but the lesion found is probably incidental. Shingles: 10% confidence - there isn't always a rash; but I think the pain is constant; and there's no bleeding with it. http://hcd2.bupa.co.uk/fact_sheets/Mosby_factsheets/shingles.html A friend's started on one side and wrapped around the back, The pain follows a nerve pathway. Patterns are shown on that page, but does not (usually) do forehead/shoulder and abdo/back (one or the other). Viral Flu: 20% confidence - your immune system is messed up due to chemo; so it does not present as commonly does, but that does not explain bleeding. Extra note: relative had gross hematuria, 3 years ago, in US. Had similar tests as you. Nothing found. They did give him antibiotic, just in case. More tests back home. No answer. 3 years later, could not urinate without pain, did many tests : prostatitis (still no answer for previous bleeding). Confidence 0 - unless you've forgotten to tell us something. Did they check your prostate? Can you ask RO doc or chemo doc for the name of an excellent GP and urologist; so you can ask if you can do 24-hour urine collection for analysis? J - not an expert > Kidney Stones: 90% confidence http://en.wikipedia.org/wiki/Kidney_stone > Bones can be affected but the lesion found is probably incidental. In scan report, there is "no stone". > Shingles: 10% confidence - there isn't always a rash; but I think the > pain is [quoted text clipped - 4 lines] > nerve pathway. Patterns are shown on that page, but does not (usually) do > forehead/shoulder and abdo/back (one or the other). I read it, it's totally different thing (I never had rash and other symptoms there) > Viral Flu: 20% confidence - your immune system is messed up due to chemo; > so it > does not present as commonly does, but that does not explain bleeding. I could thing so too, and thing they are 2 different things (bleeding and chemo). But I had my last chemo 2 years ago and my blood count came to normal long ago. > Extra note: relative had gross hematuria, 3 years ago, in US. Had similar > tests [quoted text clipped - 6 lines] > unless you've forgotten to tell us something. > Did they check your prostate? Yes they checked it, both doctors, and said it's normal. > Can you ask RO doc or chemo doc for the name of an excellent GP and > urologist; > so you can ask if you can do 24-hour urine collection for analysis? I'll try it; Today I woke up without any pain. (Same happened yesterday). After a half hour or what, when I was sitting next to comp, a mild pain started again in the area that changes intensity with positioning. ??? Ough! > J - not an expert Thanks for prompt response, J. (Wow, 3:45AM ! :) SignatureRegards, Araik Margarian http://journals.aol.com/aramargar1/MyAmericanDream/ > > Kidney Stones: 90% confidence http://en.wikipedia.org/wiki/Kidney_stone > > Bones can be affected but the lesion found is probably incidental. [quoted text clipped - 48 lines] > > Thanks for prompt response, J. (Wow, 3:45AM ! :) Well, I should have waited to think a bit. :) I think it might be bladder instead, so I hope you find good doctor soon to sort this out for you. So I quit guessing and you find relief and solution. Have you tried heating pad for the pain (and if it worsens, stop it). Please keep in touch and let us know. J >> > Kidney Stones: 90% confidence http://en.wikipedia.org/wiki/Kidney_stone >> > Bones can be affected but the lesion found is probably incidental. [quoted text clipped - 62 lines] > Please keep in touch and let us know. > J Right, I could not find on net anything with these all symbols together on net either. Not heating pad, but I wear very warm for last days; I'll try it; Thanks, I'll let you know. SignatureRegards, Araik Margarian http://journals.aol.com/aramargar1/MyAmericanDream/ > Hello J; > Still 2 weeks ago I felt much better after around 2 years of Radio/Chemo [quoted text clipped - 19 lines] > different small things happen same time? But if it were UTI, I should not > have these other symtoms persist so long after 10 days antibiotics. How's it going now, Araik? It's been a few weeks since we've heard from you and I'm concerned. J |
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