Guest guest Posted October 25, 2001 Report Share Posted October 25, 2001 Hi Alley, I was wondering how they knew it was stage 4 before they had actually gone in and done any more tests. My did didn't know what stage his was until after the surgery to remove the surrounding tissue. He was in the hospital for about 24 hours I think. It sounds like they are doing the same 'sentinel' procedure with you too. I really wish that technique would have been known when I had cancer. Removing all those lymph nodes has led to chronic fluid retention in my legs, which is a real pain in the - legs. I'm so glad things don't sound so bad now. When will you have this surgery? Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2001 Report Share Posted October 25, 2001 Claudine said <<Removing all those lymph nodes has led to chronic fluid retention in my legs, which is a real pain in the - legs. >> Cute! Yeah he did mention the fluid retention if they have to remove all the nodes there. I got a copy of my lab tests and it's pretty descriptive. My family doc removed the mole and some surrounding tissue last week and that's what they tested. But oncologist of course needs to remove more tissue to make sure and then the sentinel thing. The doc gave me some forms for the study I may qualify for. It's doing the PCR of the biopsied lymph node and then if it still shows melanoma, doing interferon treatments as the second part of the study. The amount of interferon is much more than what is normally used for Hep C, but if I do have to do this, I don't see much to worry about, hopefully I'll tolerate it as well as I did before. It is a Schering study btw. And I was amazed that all costs were to be paid by the patient. I always thot study costs were funded for the patients too. I'll find out tomorrow when. I have a writers workshop nov 16-18 in Austin and Sat is the last day for me to submit a manuscript for the workshop so I gotta find out before I send off my money. I figure I either need it really quick or after if he thinks it's ok to wait till after. Even if i have to go in a wheelchair, I wanna go! Been waiting for this for months. I'm much more optimistic now about my chances in beating the cancer. If positive attitude is anything, then I'm already cured! haha I am doing the " heal myself " , " flush out the bad " , etc etc mental excercises I did while i was on combo. Before I would go to sleep at nite, right after my mental prayers, I would visualize my body flushing out the hep, now the melanoma, a sort of excorcism (heporcism) and only letting in good healthy things with each breath. In with the good, out with the bad so to speak. I don't know if it works, but I figure, sure can't hurt! I always liked psychocybernetcs (or maybe it's the " psycho " part I identify with lol.) Almost weekend! alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2001 Report Share Posted October 25, 2001 Claudine said <<Removing all those lymph nodes has led to chronic fluid retention in my legs, which is a real pain in the - legs. >> Cute! Yeah he did mention the fluid retention if they have to remove all the nodes there. I got a copy of my lab tests and it's pretty descriptive. My family doc removed the mole and some surrounding tissue last week and that's what they tested. But oncologist of course needs to remove more tissue to make sure and then the sentinel thing. The doc gave me some forms for the study I may qualify for. It's doing the PCR of the biopsied lymph node and then if it still shows melanoma, doing interferon treatments as the second part of the study. The amount of interferon is much more than what is normally used for Hep C, but if I do have to do this, I don't see much to worry about, hopefully I'll tolerate it as well as I did before. It is a Schering study btw. And I was amazed that all costs were to be paid by the patient. I always thot study costs were funded for the patients too. I'll find out tomorrow when. I have a writers workshop nov 16-18 in Austin and Sat is the last day for me to submit a manuscript for the workshop so I gotta find out before I send off my money. I figure I either need it really quick or after if he thinks it's ok to wait till after. Even if i have to go in a wheelchair, I wanna go! Been waiting for this for months. I'm much more optimistic now about my chances in beating the cancer. If positive attitude is anything, then I'm already cured! haha I am doing the " heal myself " , " flush out the bad " , etc etc mental excercises I did while i was on combo. Before I would go to sleep at nite, right after my mental prayers, I would visualize my body flushing out the hep, now the melanoma, a sort of excorcism (heporcism) and only letting in good healthy things with each breath. In with the good, out with the bad so to speak. I don't know if it works, but I figure, sure can't hurt! I always liked psychocybernetcs (or maybe it's the " psycho " part I identify with lol.) Almost weekend! alley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2001 Report Share Posted October 25, 2001 --- AndromedaGurl <andromedagurl@...> wrote: > The doc gave me some forms for the study I may > qualify for. It's doing the > PCR of the biopsied lymph node and then if it still > shows melanoma, doing > interferon treatments as the second part of the > study. The amount of > interferon is much more than what is normally used > for Hep C, but if I do > have to do this, I don't see much to worry about, > hopefully I'll tolerate it > as well as I did before. Ok alley, we all know how much you loved your interferon, but this is a bit drastic, lol! Let's just hope that the lymph node comes back clean! > It is a Schering study btw. And I was amazed that > all costs were to be paid > by the patient. I always thot study costs were > funded for the patients too. Nope, not when the drug is already approved for whatever it is being used for, which in your case is melanoma, and it's already approved for that. I almost got into an Amgen study using daily injections of Infergen, and they were only taking people with insurance to pay for it. However, my insurance would only cover 3 doses a week (what it was approved at), so Amgen had agreed to pay for the other 4 doses per week. There is so much lab work required during studies, and lab work is very expensive, so you can bet they don't want to have to pay it if they can get out of it, which is why they really only wanted people with insurance. It's not the drugs that are so expensive for them! Keep up the good attitude. I'm a firm believer in the power of positive thinking! Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2001 Report Share Posted October 25, 2001 --- AndromedaGurl <andromedagurl@...> wrote: > The doc gave me some forms for the study I may > qualify for. It's doing the > PCR of the biopsied lymph node and then if it still > shows melanoma, doing > interferon treatments as the second part of the > study. The amount of > interferon is much more than what is normally used > for Hep C, but if I do > have to do this, I don't see much to worry about, > hopefully I'll tolerate it > as well as I did before. Ok alley, we all know how much you loved your interferon, but this is a bit drastic, lol! Let's just hope that the lymph node comes back clean! > It is a Schering study btw. And I was amazed that > all costs were to be paid > by the patient. I always thot study costs were > funded for the patients too. Nope, not when the drug is already approved for whatever it is being used for, which in your case is melanoma, and it's already approved for that. I almost got into an Amgen study using daily injections of Infergen, and they were only taking people with insurance to pay for it. However, my insurance would only cover 3 doses a week (what it was approved at), so Amgen had agreed to pay for the other 4 doses per week. There is so much lab work required during studies, and lab work is very expensive, so you can bet they don't want to have to pay it if they can get out of it, which is why they really only wanted people with insurance. It's not the drugs that are so expensive for them! Keep up the good attitude. I'm a firm believer in the power of positive thinking! Claudine __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 Hi Alleycat....so glad to hear the news. Yes my dear, me thinks you'll live for a long while to come. It just wouldn't be the same without you on this forum. So you have to stick around!! So there! LOL Hugggs Carol AndromedaGurl wrote: > > WHEW! > > Saw the oncologist today. He is such a sweet guy, or seems so > > He explained that I don't have stage 4 melanoma and that's kind of an older way of describing melanoma. He said I'm " 2.5 cm " , the length of the melanoma, so while it's not great, it's not horrendous either. > > I will still have to have some day surgery on the site of the melanoma to remove more tissue and with dye they will follow it to the groin and sample a small lymph node to see if it's spread. > > He said while it isn't just an " in and out " thing, it's not like having open heart surgery. A lot will depend on how much they will need to graft onto the site on my leg, because it will be a larger area. I may not need a graft, and he's concerned of the location cuz it's behind my knee at the top of my calf almost on the crease there. Not great for healing quickly cuz too easy to pull apart, so that may be a time issue with healing, staying off the leg, not kneeling or bending it much. > > So while I'm not out of the woods yet, I like these woods much better than the " stage 4 " woods hahahha. > > whew! I might live after all! > > alley > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 26, 2001 Report Share Posted October 26, 2001 Hey Alley, I like that idea of a " heporcism " . I think what you're doing is a great idea and I'm going to try it. Also, I think you're positive attitude is so helpful...a lot of Docs say that attitude and being positive is 99 percent of the cure. You go, girl!!! Huggggs Carol " heal myself, flush out the bad " AndromedaGurl wrote: > > Claudine said <<Removing all those lymph nodes has led to chronic fluid > retention > in my legs, which is a real pain in the - legs. >> > > Cute! > > Yeah he did mention the fluid retention if they have to remove all the nodes > there. > > I got a copy of my lab tests and it's pretty descriptive. My family doc > removed the mole and some surrounding tissue last week and that's what they > tested. But oncologist of course needs to remove more tissue to make sure > and then the sentinel thing. > > The doc gave me some forms for the study I may qualify for. It's doing the > PCR of the biopsied lymph node and then if it still shows melanoma, doing > interferon treatments as the second part of the study. The amount of > interferon is much more than what is normally used for Hep C, but if I do > have to do this, I don't see much to worry about, hopefully I'll tolerate it > as well as I did before. > > It is a Schering study btw. And I was amazed that all costs were to be paid > by the patient. I always thot study costs were funded for the patients too. > > I'll find out tomorrow when. I have a writers workshop nov 16-18 in Austin > and Sat is the last day for me to submit a manuscript for the workshop so I > gotta find out before I send off my money. I figure I either need it really > quick or after if he thinks it's ok to wait till after. Even if i have to go > in a wheelchair, I wanna go! Been waiting for this for months. > > I'm much more optimistic now about my chances in beating the cancer. If > positive attitude is anything, then I'm already cured! haha I am doing the > " heal myself " , " flush out the bad " , etc etc mental excercises I did while i > was on combo. Before I would go to sleep at nite, right after my mental > prayers, I would visualize my body flushing out the hep, now the melanoma, a > sort of excorcism (heporcism) and only letting in good healthy things with > each breath. In with the good, out with the bad so to speak. I don't know if > it works, but I figure, sure can't hurt! I always liked psychocybernetcs (or > maybe it's the " psycho " part I identify with lol.) > > Almost weekend! > > alley > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2002 Report Share Posted December 30, 2002 I'm still new to the group, but these postings caught my attention. Kinda makes us wonder why we look forward to the holidays so much! (Oh yeah, our kids...) Although my family is rude in many areas, I have not had to deal with rudeness directed toward Emma, my (nearly) 2 yr old with DS. In fact, on a positive note, my grandmother sat with Emma on the couch for an hour on Christmas Eve just talking (well, sort of) and singing. I walked by and my grandmother said with a smile " You know, Jill, this is your best child. " I smiled back and said " I DO know! " We weren't cutting my other four kids down, just acknowledging Emma's current sweetness. (It helps to be the baby of the family!) The arena where I have found the absolute worst ignorance and fear about DS is with doctors. Have any of you had this problem? I have really had to do some searching to find doctors with both knowledge of DS and compassion toward Emma. We have had absolute horror stories. This is not at all a condemnation toward doctors in general; we have found some who are incredible. I just wondered if this is a common problem? Sincerely, Jill (Mom to Luke, , Song, , & Emma--DS, craniosynostosis) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2003 Report Share Posted January 1, 2003 The arena where I have found the absolute worst ignorance and fear about DS is with doctors. Have any of you had this problem? I have found this in some doctors, teachers, daycare staff, the public and family. I feel pretty fortunate that does have good doctors, teachers and daycare staff at this time. I also work with social workers who are very supportive to me when we go through stressful times. One of my coworkers keeps a basket of beanie babies and small stuffed animals (to give to foster children) under her desk. always makes a beeline for her cubie, where he knows he can have " two " . Once she was not there and he wanted " ten " ...lol! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2003 Report Share Posted January 6, 2003 I agree wholeheartedly with this one!! My uncle is a physician and he asks the most stupid questions. I am usually very condescending when answering (without his knowing it LOL). He asked me one time " What does one get a child with DS for Christmas? " Elaine Re: Re: Whew!! The arena where I have found the absolute worst ignorance and fear about DS is with doctors. Have any of you had this problem? I have found this in some doctors, teachers, daycare staff, the public and family. I feel pretty fortunate that does have good doctors, teachers and daycare staff at this time. I also work with social workers who are very supportive to me when we go through stressful times. One of my coworkers keeps a basket of beanie babies and small stuffed animals (to give to foster children) under her desk. always makes a beeline for her cubie, where he knows he can have " two " . Once she was not there and he wanted " ten " ...lol! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 Glad you're still with us Norm. I sure it was alot of fun going thru all of that. . At least you got everything done at once. So hopefully you're good for atleast 5-6 years without a hitch then only the icd replacement. Happy that you're ok bud. TURK Whew!! Hi Everybody, Tuesday, I was having intermittent chest pain that was relieved by nitroglycerine tabs; sometimes two were required. As the day advanced I decided I’d better get to the Emergency room (80 mile trip). EKG, blood check for enzymes, etc. I stayed overnight in the CCU. The following day the Doc decided that I had unstable angina, and I was whisked by ambulance to the Heart Hospital in Albuquerque. The following day, my AICD was replaced with a St. Jude’s model. The next day, after an angiogram, a medicated stent was placed in a partially blocked artery that feeds the back of the heart, and balloon angioplasty was also performed in an adjacent artery that had collapsed. So, here I am, back home and fit as a fiddle <grin> (I wish). But, thanks to modern medicine, I AM still here. Also, the cardiologist put me back on verapamil. A local doc had cut that med six months ago. The cardiologist said verapamil was necessary to reduce the PVC’s. I was getting lots of PVC’s after stopping the medication. I read about Bill’s impending surgery. God luck Bill. I’ll be cheering for a perfect outcome for you. NormPlease visit the Zapper homepage athttp://www.ZapLife.org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 Thanks for the thumbs up, Turk. Norm Whew!! Hi Everybody, Tuesday, I was having intermittent chest pain that was relieved by nitroglycerine tabs; sometimes two were required. As the day advanced I decided I’d better get to the Emergency room (80 mile trip). EKG, blood check for enzymes, etc. I stayed overnight in the CCU. The following day the Doc decided that I had unstable angina, and I was whisked by ambulance to the Heart Hospital in Albuquerque. The following day, my AICD was replaced with a St. Jude’s model. The next day, after an angiogram, a medicated stent was placed in a partially blocked artery that feeds the back of the heart, and balloon angioplasty was also performed in an adjacent artery that had collapsed. So, here I am, back home and fit as a fiddle <grin> (I wish). But, thanks to modern medicine, I AM still here. Also, the cardiologist put me back on verapamil. A local doc had cut that med six months ago. The cardiologist said verapamil was necessary to reduce the PVC’s. I was getting lots of PVC’s after stopping the medication. I read about Bill’s impending surgery. God luck Bill. I’ll be cheering for a perfect outcome for you. Norm .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 > > Also, the cardiologist put me back on verapamil. A local doc had cut that > med six months ago. The cardiologist said verapamil was necessary to reduce > the PVC's. I was getting lots of PVC's after stopping the medication. > I'm glad to hear it works for someone! That stuff made me miserable. It made me swell up and made my heart race instead of slowing it down. Just goes to show how different we all are. Bridget Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 I’m sorry to hear that, Bridget. Are you using anything that helps the PVC problem? Verapamil is also supposed to reduce the incidence of V-tach. I took one dose of Vasotec, and my glottis swelled up. It took two weeks before it went back to normal. Yet, it works for many. I agree with you that medications don’t work the same (or at all) on different people. I’ve always wondered why that is. Norm -----Original Message----- From: Bridget [mailto:rumpleteasermom@...] Sent: Tuesday, July 01, 2003 6:15 AM Subject: Re: Whew!! > > Also, the cardiologist put me back on verapamil. A local doc had cut that > med six months ago. The cardiologist said verapamil was necessary to reduce > the PVC's. I was getting lots of PVC's after stopping the medication. > I'm glad to hear it works for someone! That stuff made me miserable. It made me swell up and made my heart race instead of slowing it down. Just goes to show how different we all are. Bridget Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2003 Report Share Posted July 1, 2003 I don't get a lot of PVCs. I just get tachycardic at the drop of a hat. (or in the shower) In my case, we have to control my BP and my clotting. I'm getting a device check tomorrow and I want to talk to them about the whole tach thing. Bridget > > > > > Also, the cardiologist put me back on verapamil. A local doc had > cut that > > med six months ago. The cardiologist said verapamil was necessary > to reduce > > the PVC's. I was getting lots of PVC's after stopping the > medication. > > > > I'm glad to hear it works for someone! That stuff made me > miserable. It made me swell up and made my heart race instead of > slowing it down. Just goes to show how different we all are. > > Bridget Quote Link to comment Share on other sites More sharing options...
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