Guest guest Posted June 26, 1999 Report Share Posted June 26, 1999 In a message dated 6/25/1999 6:47:04 PM Eastern Daylight Time, scj1@... writes: << Had my wisdom teeth out yesterday, I'm glad it's over, but FEEL AWFUL. It hurts to eat, and I've been eating omeletts and jello. Yesterday I only had about 300 calories. I just hope I don't goof up the diet making my body retain the fat! It's frustrated. I " m hoping that tomorrow will be better. >> Hope you feel better, have some of the atkins shakes!!! Add oil, you'll feel full, plenty of nutrition. carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 1999 Report Share Posted August 3, 1999 , Hello. I am glad to of read your post. I wanted to comment on the question as to how to tell other family members that you have decided to have another child after finding out about the whole CF thing. We have had 3 children after finding out that our oldest has CF. We decided we wanted more children, and we told them after we found out I was pregnant. We didn't leave it open for discusion, and no one really gave us a problem with it. My oldest sister did ask me what I would do if the baby had CF, and of course, I told her, well, I guess we'll give it the needed treatments, and enzymes, just like we do with the older one. I guess people can argue that you shouldn't take the risk of having another child with CF, but then maybe we shouldn't have kids at all since anyone of our kids could be born with leukemia, cancer, heart problems, and etc, and that has yet to stop us from having babies. You must do what you and hubby think is best for you and the family, and do what you know you can handle. The risk for another CF child is there, yes, but any child that anyone has could be sick with something. I guess what I want to say is, it is your decision, so stick with it, if you have decided to have more or not, it's you and hubby's decision, and that's that. Just my .02 cents worth:) -24 yr. old mom of 4-one with CF Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 1999 Report Share Posted August 6, 1999 Mollie wrote " Keep up the good work everyone. Before long we'll all be sportin bikinis!! Mol Funny you should mention bikinis. I am going on a cruise in November ( Thanksgiving week) and want to be able to be proud of my body in a bathing suit ( not a bikini though). I am exercising and using weights. I started doing some new leg routines and boy I have been feeling the muscles. Last night I bought adjustable leg weights I am going to started using them tomorrow. I worked hard today and can't do anything but sit at this puter when I get home. Lyndia Alabama Atkins Way of Life since 6/14/99 " Only cat lovers know the luxury of fur coated, musical hot water bottles that never go cold " meet my family at http://www.geocities.com/Heartland/Park/8396/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 1999 Report Share Posted September 29, 1999 Where my butt always is, behind me!!!!!!! Geez, you men don't know nuttin. LOL >>>>>>>>>>> From: HAIGJIM@... Hello , I was just checking to see if you were awake. If you kick Roy with one foot and me with the other, where does that leave your butt?? Good Nite Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 1999 Report Share Posted September 29, 1999 Where's those pointy toed boots of mine? >>>>>>>>>>>>>>>> , HAIGJIM@... writes: << If you kick Roy with one foot and me with the other, where does that leave your butt?? >> Jim,,, dont confuse her. She just found her ankles. Oh, and susan, did I tell you now nice your font looks tonight? Roy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 1999 Report Share Posted September 29, 1999 I have a list!!!!!!!! Wanna see it??? LOL >>>>>>>>>> Rlr1999@... writes: << She is not sure if she has ankles, but she does have feet. : ) > From: Lu1953@... LMAO ...what are we going to do with Roy? lol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 1999 Report Share Posted September 29, 1999 OK Roy, You win the " The Biggest Kiss UP " award!! LOL >>>>>>>>>>>>>>>> << LMAO ...what are we going to do with Roy? lol >> Oh no, I dont think I want the two of you deciding that one. : ) Lets let Angie decide. I am sure she would be an impartial judge. What do you say angie? BTW that recipe for marinara was excellant. It was a masterpiece. I sent it in to Gourmet mag with compliments about your catering service. My and arent you looking nice tonight. What was your bank account number? : ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 29, 1999 Report Share Posted September 29, 1999 Up Roy's patoody!! I didn't spell that right did I? Wonder if my spell checker will recognize the word? LOL >>>>>>>>>>>>> OL RIGHTY! hey where are your ankles,asking almost a afraid of the answer Love and hugs, Angie http://members.tripod.com/lvngwell/Angiesplace2.htm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2000 Report Share Posted December 13, 2000 , Welcome! I'm and my son Jakob was born 2/9/98 with very severe bilateral clubfoot (as described by his ortho). He has been treated by Dr. Stuart Weinstein, a colleague of Dr. Ponseti, and now runs, jumps, and climbs like any other almost 3 year old. You can read more about our story at http://clubfoot.homestead.com What questions do you have? We've all been there and will try to answer all your questions. & Jakob maralido@... wrote: > Hello, > > I am new to this list. My husband and I, had a son, , > born on November 11, 2000. was born with severe bilateral > clubfeet. is presenty in his first set of casts. I have so many > questions I don't know where to start! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2000 Report Share Posted December 13, 2000 First of all , where do you live? Second, what kind of casts does your son have? Is his Dr. practicing the Ponseti method? You came to the right place! Windie Lilly > From: maralido@... > Reply-To: nosurgery4clubfootegroups > Date: Wed, 13 Dec 2000 17:11:02 +0000 > To: nosurgery4clubfootegroups > Subject: HI > > Hello, > > I am new to this list. My husband and I, had a son, , > born on November 11, 2000. was born with severe bilateral > clubfeet. is presenty in his first set of casts. I have so many > questions I don't know where to start! > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 13, 2000 Report Share Posted December 13, 2000 In a message dated 12/13/2000 12:29:20 PM Central Standard Time, windie@... writes: > First of all , where do you live? > Second, what kind of casts does your son have? > I sent our introduction to the list owner. We live in Lafayette, La. has full length plaster casts on both of his legs. This is his first casting. We have the next appointment tomorrow in the morning. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2000 Report Share Posted December 29, 2000 , I have'nt been up on all the postings lately, just a little here and there. Is going to Dr. Ponseti? Or is going to a doctor who does the same method? I was curious as to how old he is and how many casts he has had. My daughter had 10 half leg casts with her first orthopedist and then 6 casts with Dr. Ponseti. So altogether 16, and boy I don't think we could have taken another! She always did real well with them and they all really did'nt bother her much but it was hard on Dave and I a lot of the time. We worried that her legs would not develope normally because of the constriction they always had. Now her legs are beautiful and chubby at 10 1/2 months of age. We finished all the casting at around 7 months. Has his foot/feet not shown the kind of improvement that they should be showing by now? We saw very little improvement with our first 10 casts but saw MAJOR improvement right away with the remaining 6 (Ponseti casts). Origionally I have to say she was only supposed to need 4 maybe 5 casts, but as we went along he told us she needed one more and then the tenotomy. It really was well worth it all I have to say. I do hope that once the baby fat fades her legs are still full and healthy and not too skinny looking. I guess only time will tell, I have heard that happens more often though with the kids who have to have the surgery because it affects the muscles directly with the lengthening of the tendons and ligaments. Hope things start to look up real soon. Holly and Re: HI >Hi Sara, > >Thanks for your support. is only on his third casting but it is already >starting to become an ordeal. I am starting to lose hope with the casting >method. I just want to avoid surgery if at all possible. However I don't know >how long we can put up with the casting. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2000 Report Share Posted December 29, 2000 , I'm sorry to hear you're having such a rough time. I can't say I have followed your story completely, so I hope I don't say something that has already been suggested. Looking back over your previous posts, it seems to me that 's casts are changed every other week. When Jakob was in casts (almost 3 years ago), his were changed weekly with the exception of the post tenotomy casts which were worn for 2 1/2 - 3 weeks. I can remember counting the days until his casts came off each week hoping that he wouldn't need more. He was in the casts from birth until he was 8 weeks old. Now, it seems like no time at all, but then, it seemed like he'd always be in casts. I know it's easier said than done sometimes, but keep your chin up and know that we have all been where you are and that it does get better. won't be in casts forever. I do have a few questions for you though. Has your doctor specifically said he/she practices a non-surgical method? Has the doctor given you any idea as to how many casts will need? Have you asked the doctor what percent of his/her patients require surgery? Keep us posted on 's progress. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2000 Report Share Posted December 31, 2000 In a message dated 12/30/2000 2:32:36 AM Central Standard Time, teresam@... writes: > I'm sorry to hear you're having such a rough time. I can't say I have > followed your story completely, so I hope I don't say something that has > already been suggested. Looking back over your previous posts, it seems > to me that 's casts are changed every other week. Yes, so far 's casts have been changed every 2 weeks. With this last cast change 's feet and knees are in very different positions where before his knees and feet were basically in identical positions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2000 Report Share Posted December 31, 2000 In a message dated 12/29/2000 10:49:01 PM Central Standard Time, dhtru@... writes: > I have'nt been up on all the postings lately, just a little here and there. > Is going to Dr. Ponseti? Or is going to a doctor who does the same > We are not seeing a Ponseti doctor. was born on November 11th and is presently on his third set of casts. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2000 Report Share Posted December 31, 2000 , You'll have to disregard most of my last post, I'm sorry I thought you were going to Ponseti. I just read some of the other posts up ahead and realized I should have read them all before I answered! What technique is your doctor using? It sounds like the 3 rd cast was putting him in more of a corrected possiton. Are they full leg casts? Holly Re: HI >In a message dated 12/29/2000 10:49:01 PM Central Standard Time, >dhtru@... writes: > > >> I have'nt been up on all the postings lately, just a little here and there. >> Is going to Dr. Ponseti? Or is going to a doctor who does the same >> > >We are not seeing a Ponseti doctor. was born on November 11th and is >presently on his third set of casts. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2002 Report Share Posted December 14, 2002 Hi Kathy; Sometimes some people feel too much information is bad for you, and I never agreeded. However, after speaking to many, and reading lots of scary stuff, one wonders. I can't tell you about your dad's cancer, my husband Bob just has started treatment for stage 4 colon cancer, with his adominal wall also having become " infected " with small cancer as well. Your dad's age isn't so old, and if he is very active, he should strive to see that he does get the best, as well as he can tolorate, as quick as he can. It is great he has a supportive family - we are just now getting a second opinion (wed)and Bob has started treatment already with chemo. But this second opinion I'd suggest to you as well. I have read where all the treatments give is hope, and that is worth the money - and that cancer is big business. Our oldest son is supportive of what we are doing, yet says if it were him, he wouldn't go thru it this way. (using nature and other methods instead, that the reasons people are put thru this is more for income than for cure or recession of cancer) I don't buy into that, sure some is iffy, some is perhaps (drug companies)way overpriced, but it is buying more than hope. Will get back on when we get more facts from this second opinion, let us know what you do as well. Take care, and Always the Best to you and yours, Betty ps. Why do they have to name a drug so close to that death doctors name?? > > Hi all, > > I'm new to the yahoo groups and seem to be having a bit of trouble verifying my email address in Yahoo so I hope this post reaches the list. > > My Dad was diagnosed with colon cancer in July of this year. He had a 4 cm tumor and 7 of 32 nodes were positive. They saw a spot in the liver but the biopsy was negative. When we were at the onc office after some discussion he was referred to Henry Ford (in MI) for a possible liver resection or RFA. He was able to undergo the resection - losing about 20% of his liver. I thought the doctor said the enlarged lymph node that they biopsied *and * the spot were negative,. Is it possible to have a liver met that twice is negative on the biopsy but that the doc thinks is cancer? > He is home and recovering nicely. The staples come out on Thursday and my sister and I are thinking ahead to possible chemo. We both have serious reservations about the risks vs benefit. There is no visible cancer present, he is 76, pretty active and involved in life. He has had a pacemaker for 20 years and during his cardio clearance prior to surgery we learned he had had a minor undetected heart attack. His vitals were stable both during and after surgery. Any thoughts on chemo - onc has offered 5fU/Lueckavorin (sp?) or the threesome 5FU/Luek/Oxyplaitain (sp?) It will be about 6 weeks before he is ready and he relies on us to help him with his medical decisions. We really don't know what is the best way to go. There were a lot of raised eyebrows when people found out he was having a liver resection at his age but he came through that fine so we don't want to sell him short if chemo is a good option but we also don't want to put him through something that would have little benefit. Any thoughts/experiences would be appreciated! > > Kathy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2002 Report Share Posted December 14, 2002 Hi Kathy, Just like to say " welcome " to the board (but sorry to hear about your Dad's cancer). <<I thought the doctor said the enlarged lymph node that they biopsied *and * the spot were negative,. Is it possible to have a liver met that twice is negative on the biopsy but that the doc thinks is cancer?>> This is a bit confusing....what I would do is call the surgeon's office and ask for a copy of all your Dad's records. Among them should be (1) the " operative report " (summary of what happened during the operation) and (2) A pathology report indicating the results of looking at the tissue removed during surgery. This ought to answer the question for sure! In a way I find it difficult to believe that he would have undergone a liver resection without " proof positive " that what was seen on scans was actually tumor, but I guess anything is possible... It is important to find out whether the liver " spot " is a metastasis or not because that determines your Dad's stage - is he stage III or stage IV? The reason you need to know that is because it can help him make the chemo decision. For colon cancer, disease free survival at 5 years is the doctor's definition of being " cured " (Most patients don't develop recurrence after this time has passed). If your Dad is stage III, 5-FU + Leucovorin chemotherapy has been proven in large clinical trials to improve the 5-year survival ( " cure " ) rate by around 10-15% - from around 50% with surgery alone to around 60-65% with surgery followed by chemo. Thus, if he is stage III he should probably think very hard before declining the chemo. If he is stage IV with a liver resection, the ability of chemo to increase the 5-year survival rate (around 30-40% with surgery alone) is apparently a bit questionable and I think the decision is a lot harder. The data they have is all based on the " old " 5-FU + leucovorin which does not seem to improve cure rate much if at all. There are 2 newer chemotherapies, Camptosar and Oxaliplatin, which apparently improve stage IV survival TIME by a couple months over 5- FU/LV alone, but there have been no clinical trials that I am aware of to PROVE they could increase 5-year survival RATE (cure) even in patients with completely resected disease. They MIGHT be able to do this, there just aren't trials PROVING it. Anyway, assuming that one of these chemos CAN improve the cure rate, one might guess that the improvement is probably no better than the stage III chemo cure improvment of 10% (my oncologist estimated potential cure rate for Camptosar/5-FU/LV to be under 3%, I assume Oxaliplatin would be similar). So what your Dad would be " giving up " if he decides to decline (Oxaliplatin or Camptoar) chemo is an extension of the LENGH of survival time, at the gain of QUALITY time chemo free. Clinical trials showed that the difference in Camptosar/5-FU/LV was a couple months over 5-FU/LV alone...but there was no " contol arm " of patients NOT on chemo in the trials so it is hard to say how such patients would have done on nothing! I might also point out again that these clinical trials had a mixture of all kinds of stage IV's - many probably had unresectable disease and a much worse prognosis than the few who COULD be " cleared " thru surgery. Some oncologists argue that " clear " stage IV's should gain more than the couple months that ALL patients got, but again there is no published research I am aware of which indicates this. (NOTE: Evidence from the medical literature and/or transcripts of discussions with oncologists at famous cancer centers supporting the above view may be found in the LINKS section of this site - see folders " Treatment Decisions and Clinical Trials " and " Technical Papers from the Medical Literature " . HOWEVER PLEASE KEEP IN MIND...Although I have done a ton of research on colon cancer, I am just a CC survivor not a doctor or health care professional so I could be wrong in my interpretation of what I found. Anything you read here or elsewhere on the Internet should not be regarded as medical advice but only a STARTING POINT for discussion with your doctor!!!) <<Any thoughts on chemo - onc has offered 5fU/Lueckavorin (sp?) or the threesome 5FU/Luek/Oxyplaitain (sp?)>> There is another option which the onc should have mentioned - there is an oral form of 5-FU which has been shown in Phase III (randomized) clinical trials to be equivalent to intravenous 5- FU/Leucovorin called XELODA (Capecitabine), with a lot less bad side effect than the intravenous chemo. I have some references on this in the Xeloda folder (See LINKS section on the bar to your left). There are also serious hints that adding the common arthritis medication Celebrex to Xeloda may further lessen the side effects and maybe even improve the efficacy (e.g. see the abstract from a small clinical trial reported at ASCO last May). Personally, I would rather take oral chemos than intravenous...so if MY choices were Xeloda (with or without Celebrex) vs IV 5-FU/LV, it would be an easy decision LOL! You might try printing out the abstracts in the Xeloda folder and take these in to the oncologist for discussion - I think they would be the main supporting evidence an oncologist would want for its use. Betty Wrote: <<But this second opinion I'd suggest to you as well.>> Absolutely!!! It should be in a major NCI cancer center http://ourworld.compuserve.com/homepages/suthercon/#Wheretogo Betty Wrote: <<I have read where all the treatments give is hope, and that is worth the money - and that cancer is big business. Our oldest son is supportive of what we are doing, yet says if it were him, he wouldn't go thru it this way. (using nature and other methods instead, that the reasons people are put thru this is more for income than for cure or recession of cancer) I don't buy into that, sure some is iffy, some is perhaps (drug companies)way overpriced, but it is buying more than hope.>> There is a huge split in the cancer community between those advocating " conventional " vs " alternative " therapies...which is a real shame because this is such a difficult problem, NEITHER side seems " completely right " to me and both make some valid points. It is very clear (my view!) that surgery/ablation is the " best " (i.e. most effective) of the conventional treatments; according to every medical paper I've seen it offers the only (or almost the only) chance of " cure " in stage IV. But I think there are some other viewpoints such as those expressed by Lerner http://www.commonweal.org/choicescontents.html and Ben http://virtualtrials.com/williams.cfm that patients ought to also consider. See Amazon.com review of Ben's book, Surviving 'Terminal' Cancer: Clinical Trials, Drug Cocktails, and Other Treatments Your Doctor Won't Tell You About' - really good review of that book by M Dabbs III who says [snip] is even-handed in his treatment of the facts, carefully addressing several perilous topics that could easily have degraded into sour grapes. He carefully draws a distinction between doctors as individuals, for whom he holds obvious respect, and a troubled medical system as a whole. Perhaps most importantly, , a Harvard-educated scientist, does not fall into the trap of arguing 'alternative versus traditional' medicine. Instead, he takes traditional, alternative, and experimental medicine, as well as some of their related, rhetorical arguments, and examines them together under uniform scientific scrutiny. [stop] (See LINKS section of this site for a direct link to review) There is also an interesting " Integrative " practitioner in Chicago http://www.blockmd.com/ , discussed in the Lerner book who is experimenting with " chronotherapy " (chemo delievered according to body rhythms which reduces side effects and MAY increase efficacy http://www.blockmd.com/unique/Chronotherapy.html Ideas like this originated in Europe but don't seem to have caught on in the US even though they SEEM to have merit. I think it best to keep an open mind...I have noticed that generally things get " political " when there is no obvious answer, don't think there is any exception here! I like the viewpoint of Kathleen Dowling Singh (discussing the mindset of " strongly held beliefs " ) [snip] Sadly, I see many people attempt to cope with catastrophic illness from this stance. . . at the level of Belief, it matters not so much WHAT the beliefs are, but THAT they are: inflexible, holding sway, disallowing creative thought or novel behavior. Here, people blindly follow the dictates of whatever doctor fate has led them to, doing nothing themselves to aid the effectiveness of the medical interventions, trusting completely in the efficacy of medical science and their doctor's commitment to them. Some insist they will only follow procedures sanctioned by the AMA - they are not about to try yoga or acupuncture or therapeutic touch. Others insist that they will only follow procedures the AMA disclaims – no one in the medical community knows what he or she is talking about, everyone in the medical community has a vested interest in its own treatments, and so on. They refuse to try chemotherapy, radiation, surgery. They will stick to their guided imagery, thank you very much. In the level of Belief, there is a trapped quality: human beings as automaton, the individual life not yet fully explored or owned. [stop] IF integrative or alternative approaches " work " , I think that most honest practitioners would tell you that they are MOST LIKELY to help patients with no obvious disease...it would be very difficult for herbal or other alt approaches to actually shrink tumors. Although this is apparently possible, see for example the case of Dr. Fair, former head of the Urology Dept at Sloan Kettering who declined Camptosar in favor of herbal alts http://www.jeromegroopman.com/df.html His approach didn't cure him, but seemed to extend his life beyond what would have been expected from chemo and he had a much better quality of life during that time. That's certainly nothing to sneer at! http://www.cancerdecisions.com/011402.html So I dunno...little is obvious with stage IV and this is certainly not an easy decision. Hope this helps give a few ideas for discussion w/ oncologist! I like Arlene Harder's " Making Treatment Choices " http://www.thelearningplaceonline.com/illness/choices-intro.htm http://www.thelearningplaceonline.com/general/maps/illness.htm http://www.thelearningplaceonline.com/illness/choices/values.htm [snip] Believing Your Choice is the Best You Could Have Made Imagine now that you have made your decision based on what you feel is best for you, treatment is over, and it's several years down the road. If there is no longer any sign of disease in your body, whether or not the doctors are willing to say you were " cured, " you will most likely look back on the treatment you chose as having been the " right " one for you. But what if your choice did not lead to a cure or long-term survival? Will you still be able to look back on the decision and say, " I made the best choice I knew how to make and even if something else 'might' have allowed things to turn out differently, I am satisfied with the process with which I made my choice and do not regret my decision. " Most people would like to be able to make that statement. One way you can be more likely to accept your choice—no matter what the outcome will be—is to sit down today and write out your reasons for making the choice you make. Put down the facts you know and the importance of each of those facts and their relationship to your decision. Include how you want to live your life, as well as how long you want to live. Then, if things do not turn out quite as you hoped, you can read that paper and realize that you did the very best you could based on what you knew at the time you made the decision. Even if new information becomes available later, you will be able to see that your decision was based firmly on what you believed was most consistent with your values at the time. Best Wishes, > > > > Hi all, > > > > I'm new to the yahoo groups and seem to be having a bit of trouble > verifying my email address in Yahoo so I hope this post reaches the > list. > > > > My Dad was diagnosed with colon cancer in July of this year. He > had a 4 cm tumor and 7 of 32 nodes were positive. They saw a spot in > the liver but the biopsy was negative. When we were at the onc > office after some discussion he was referred to Henry Ford (in MI) > for a possible liver resection or RFA. He was able to undergo the > resection - losing about 20% of his liver. I thought the doctor said > the enlarged lymph node that they biopsied *and * the spot were > negative,. Is it possible to have a liver met that twice is negative > on the biopsy but that the doc thinks is cancer? > > He is home and recovering nicely. The staples come out on Thursday > and my sister and I are thinking ahead to possible chemo. We both > have serious reservations about the risks vs benefit. There is no > visible cancer present, he is 76, pretty active and involved in > life. He has had a pacemaker for 20 years and during his cardio > clearance prior to surgery we learned he had had a minor undetected > heart attack. His vitals were stable both during and after surgery. > Any thoughts on chemo - onc has offered 5fU/Lueckavorin (sp?) or the > threesome 5FU/Luek/Oxyplaitain (sp?) It will be about 6 weeks before > he is ready and he relies on us to help him with his medical > decisions. We really don't know what is the best way to go. There > were a lot of raised eyebrows when people found out he was having a > liver resection at his age but he came through that fine so we don't > want to sell him short if chemo is a good option but we also don't > want to put him through something that would have little benefit. Any > thoughts/experiences would be appreciated! > > > > Kathy > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2002 Report Share Posted December 16, 2002 Hi Kathy If I can add my 2 cents. I was told I was stage 111 but I am not sure if that was correct since 2 years later I had liver met and liver resection. Lost 60% of liver plus gall bladder. Original chemo after colon resec was 5fu + levamisole. I was told that there was no protocol for adjuvant treatment after liver resection but I was lucky to get on a clinical trial for Irenotecan/Camptosar (cpt11). I am not sure if the situation has changed since my surgery (2000) but I would look if a clinical trial is available if adjuvant treatment is not and you wish to pursue the chemo option. Good luck. By the way as always says what you read here is not medical advice, you should always discuss your situation with your doctor. Also I will try to find the Camptosar trial that I was on. I was told that my survival rate after colon resection was 50% with surgery alone but increased 60 to 65% with chemo. This is actually a 30% increase (30% of 50%) not the 10% as you have said. I bring this point up only to point out that the increase in survival rate with chemo is quite a bit better than 10%. Regards > > > > > > Hi all, > > > > > > I'm new to the yahoo groups and seem to be having a bit of > trouble > > verifying my email address in Yahoo so I hope this post reaches the > > list. > > > > > > My Dad was diagnosed with colon cancer in July of this year. He > > had a 4 cm tumor and 7 of 32 nodes were positive. They saw a spot > in > > the liver but the biopsy was negative. When we were at the onc > > office after some discussion he was referred to Henry Ford (in MI) > > for a possible liver resection or RFA. He was able to undergo the > > resection - losing about 20% of his liver. I thought the doctor > said > > the enlarged lymph node that they biopsied *and * the spot were > > negative,. Is it possible to have a liver met that twice is > negative > > on the biopsy but that the doc thinks is cancer? > > > He is home and recovering nicely. The staples come out on > Thursday > > and my sister and I are thinking ahead to possible chemo. We both > > have serious reservations about the risks vs benefit. There is no > > visible cancer present, he is 76, pretty active and involved in > > life. He has had a pacemaker for 20 years and during his cardio > > clearance prior to surgery we learned he had had a minor undetected > > heart attack. His vitals were stable both during and after > surgery. > > Any thoughts on chemo - onc has offered 5fU/Lueckavorin (sp?) or > the > > threesome 5FU/Luek/Oxyplaitain (sp?) It will be about 6 weeks > before > > he is ready and he relies on us to help him with his medical > > decisions. We really don't know what is the best way to go. There > > were a lot of raised eyebrows when people found out he was having a > > liver resection at his age but he came through that fine so we > don't > > want to sell him short if chemo is a good option but we also don't > > want to put him through something that would have little benefit. > Any > > thoughts/experiences would be appreciated! > > > > > > Kathy > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2002 Report Share Posted December 17, 2002 > > Hi Kathy > > If I can add my 2 cents. I was told I was stage 111 but I am not > sure > > if that was correct since 2 years later I had liver met and liver > > resection. Lost 60% of liver plus gall bladder. Original chemo > after > > colon resec was 5fu + levamisole. I was told that there was no > > protocol for adjuvant treatment after liver resection but I was > lucky > > to get on a clinical trial for Irenotecan/Camptosar (cpt11). I am > not > > sure if the situation has changed since my surgery (2000) but I > would > > look if a clinical trial is available if adjuvant treatment is not > > and you wish to pursue the chemo option. > > Good luck. > > By the way as always says what you read here is not medical > > advice, you should always discuss your situation with your doctor. > > Also I will try to find the Camptosar trial that I was on. > > I was told that my survival rate after colon resection was 50% with > > surgery alone but increased 60 to 65% with chemo. This is actually > a > > 30% increase (30% of 50%) not the 10% as you have said. I bring > this > > point up only to point out that the increase in survival rate > > with chemo is quite a bit better than 10%. > > Regards > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2003 Report Share Posted August 6, 2003 Just wanted to say hello to everyone.. and let you know that I am still among the living... I sent a previous message, but I am not sure it got to you all... I am just trying this one to see if it made it to you ... from Iowa.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2007 Report Share Posted July 10, 2007 Lynn~ If you need me for anything, I'm here. I was going through my own funk last week. I am just now starting to feel well enough to have a conversation. Man, when it hits, it hits hard, doesn't it? I am glad you are back with us. You've been missed, my friend. I'm lifting you in prayer. God bless...Val I have no greater joy than to hear that my children walk in truth. 3rd 1:4 Hi Ok so I guess it is time to catch up with what is going on with the family. It has been one of those days when I have been in a funk and can't get out. Maybe you all can get me out of it if I can sit here long enough. First I want to answer a couple of questions from Sharon. Sorry I didnot respond at the time. The lemon balm plant does not smell until you bruise a leaf. Then it smell like you just cut a lemon. I cannot move the sewing room down stairs as there are only three rooms. The lliving room and kitchen are not large and the computer room is small. 9x10 including the closet. I have thought about moving it to the playhouse with the rest of the crafts but that is a lot of work and will take time. Yes there is an AC out there. I have started on it with some help from a grandson. I am working out what I want where but first I have to find out what is out there and figure out what to do with it. For those who do not know the Playhouse is the 2 car garage that has been used by for many hobbies and business. The latest was a CB shop for a few years before he died 2 yrs ago.May you always find HAPPINESS and BUTTERFLIES Lynn Butterflies are angels bringing messages from God No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.2/893 - Release Date: 7/9/07 5:22 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Val and Akiba. Im so sorry you both are in so much pain. Akiba,its great you can go to the dentist now. And I wish there was some way you could get to one Val. I dont have TN pain but have read enough and seen what everyone here goes through with the pain and I couldnt imagine. You all have my sympathy. It sounds so painful. Its hard to be having problems already with our symptoms then something going wrong with a tooth, just more pain added. Val. You so dont imagine anything. Its unfortunetly all real. If anything you dont share it all. Im like that too.I know there are other people feeling just as crappy or crapier then me so I dont complain. I have been feeling so crappy lately and I havnt even been out in the heat. Well, I hope all your teefees feel better soon. hugz,cassy --- MSersLife wrote: > Well the GOOD news is I just got off the phone with the local medicaid > people and they say I HAVE DENTAL!!! I've Never had it, anywhere!!! And > Boyhowdy do I need it now!!! > > Actually, a shot of hootch and a motrin 800 and I can finally close my teet > h > without screaming...YeeHaw!! > > Sorry you're hurting too, makes me think it must be TN, I looked at my teet > h > using mirrors and see nothing that would cause this misery...but I'll make > an appt with the dentist anyway, been far too long since I was masochistic > enough to go to one... > > Hugs...get better or do as I did, pretend you're a field and get plowed... > > Akiba > > > > -- Re: Hi > > > > Akiba~ > > You too?! I woke up yesterday with my tooth hurting me something fierce! > The first thing I thought of was, I must have been grinding my teeth in my > sleep. And I'm still not so sure I wasn't. Like you, I was in much pain. > Today is day 2 of the horrible pain. I didn't eat yesterday, and if the pai > n > doesn't subside soon, I imagine I won't be eating today either. I'm not rea > l > swollen, but enough so that I can't quite close my teeth together. It does > feel like the pain is coming from a nerve. And like you, I am unable to go > to the dentist. This is a molar that lost it's filling and is completely > broken in half, to the gumline. > > I am scarfing down the Goody's pain powders today! I don't get it. Have yo > u > noticed that with this group, when one person experiences something, it > usually effects others as well? I'm starting to think that my ailments are > all in my head and I'm just having sympathy issues. I would totally believe > that if I wasn't experiencing the same thing, before reading it about > others! > > I hope you start feeling better real soon. I hope I do too > > God bless...Val @};- > > I have no greater joy than to hear that my children walk in truth. > > 3rd 1:4 > > > > > > Re: Hi > > > === Message Truncated === ________________________________________________________________________________\ ____ Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder tool. http://autos.yahoo.com/carfinder/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 This is just the BEST news yet! GOOOOOOO! for it, Akiba! Love to you, your teeth, Rob and Robbin, love, n --------- Hi Ok so I guess it is time to catch up with what is going on with the family. It has been one of those days when I have been in a funk and can't get out. Maybe you all can get me out of it if I can sit here long enough. First I want to answer a couple of questions from Sharon. Sorry I didnot respond at the time. The lemon balm plant does not smell until you bruise a leaf. Then it smell like you just cut a lemon. I cannot move the sewing room down stairs as there are only three rooms. The lliving room and kitchen are not large and the computer room is small. 9x10 including the closet. I have thought about moving it to the playhouse with the rest of the crafts but that is a lot of work and will take time. Yes there is an AC out there. I have started on it with some help from a grandson. I am working out what I want where but first I have to find out what is out there and figure out what to do with it. For those who do not know the Playhouse is the 2 car garage that has been used by for many hobbies and business. The latest was a CB shop for a few years before he died 2 yrs ago.May you always find HAPPINESS and BUTTERFLIES Lynn Butterflies are angels bringing messages from God Be a better Heartthrob. Get better relationship answers from someone who knows.Yahoo! Answers - Check it out. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.2/894 - Release Date: 7/10/07 5:44 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2007 Report Share Posted July 11, 2007 Cassy~ I have been thinking about you a lot. I know you are not feeling well. I am so sorry. I wish there was something I could do for you. Do know that I have been remembering you in prayer. I know with the weather and all, it's been very miserable for everyone. I think I'm feeling it more this year because we didn't really have a winter. We had summer, fall, fall, short spring, summer. Where's the break? We've been getting rain the last two days, but still, that's really no relief. It's still hot and now....very humid. I was talking to my dad yesterday. He says he has talked to Mark. He's having a pretty hard time right now. He's hibernating and has pretty much closed himself off from the family. Not because he's mad at us or anything. It's more like a wounded animal type deal. He doesn't want any of us to know how much he is hurting. I think he is in the begining stages of another relapse. I wish he would allow at least myself to stay in contact with him. If anyone knows what he's going through, It's me. It's not the same disease, but it's very simular, in that there are relapses and remissions, pain, and depression. I hate knowing that he's to proud to allow himself to be seen as being vulnerable. What an EGO! My dad did say that he's supposed to talk to Mark this weekend. I hope he does. As for you, young lady....Don't forget to let us know how you Dr. visit goes. It's tomorrow right? I sure hope that you will find the answers to your illness. I think you deserve some by now, don't you? Love and blessings....Val ******************************************************************* Val and Akiba. Im so sorry you both are in so muchpain. Akiba,its great you can go to the dentist now.And I wish there was some way you could get to oneVal. I dont have TN pain but have read enough and seenwhat everyone here goes through with the pain and Icouldnt imagine. You all have my sympathy. It soundsso painful. Its hard to be having problems alreadywith our symptoms then something going wrong with atooth, just more pain added. Val. You so dont imagineanything. Its unfortunetly all real. If anything youdont share it all. Im like that too.I know there areother people feeling just as crappy or crapier then meso I dont complain. I have been feeling so crappylately and I havnt even been out in the heat. Well, Ihope all your teefees feel better soon.hugz,cassy No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.10.2/894 - Release Date: 7/10/07 5:44 PM Quote Link to comment Share on other sites More sharing options...
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