Guest guest Posted March 20, 2000 Report Share Posted March 20, 2000 In a message dated 3/20/00 2:24:59 PM Eastern Standard Time, shen@... writes: << I'm not sure how much choice you have with your insurance, but it was important for me to find an endo that actually believed in the anti-thyroid medication as opposed to RAI. I felt that it would not be productive to be with a doctor who was " humoring me " to let me be on PTU, all the while thinking that in a few months they'd talk me into RAI. >> , That's my BIGGEST hold right now...we have NO insurance! JUST my visit tomorrow will cost us $125 dollars, then follow-ups are $45. That's the part I am NOT looking forward to. The thing I pray for right now, is that I understand this endo....he's foreign and I'm afraid I won't understand what he's saying. I will NOT jump into anything. I want to do the right thing, and hopefully he believes in trying medication first. It's been a longggggggg 3 months, can't believe my visit is FINALLY tomorrow!!! Thanks for the help everyone! I'll let you know how it goes tomorrow morning! Jewls Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2000 Report Share Posted March 20, 2000 Jewls: I'm not sure how much choice you have with your insurance, but it was important for me to find an endo that actually believed in the anti-thyroid medication as opposed to RAI. I felt that it would not be productive to be with a doctor who was " humoring me " to let me be on PTU, all the while thinking that in a few months they'd talk me into RAI. If your doctor agrees to put you on medication, ask him/her what the normal procedure is (monthly blood tests, rapid or slow decrease in dosage, what dosage to start with, what your experience will be, etc.) I have also heard that Tapazole may end up being safer in the long term - in fact, I will be speaking with my new endo about that in a week or so. Finally, ask all the questions you want about what all the numbers mean on your blood test, and anything else you've been wondering about. I actually make lists that I take with me because I tend to forget all my questions unless they are written down. It's good to ask a lot of questions because if your doctor doesn't have the patience to answer these questions even on the initial visit, you can pretty much guess how communications are going to be. With all the ups and downs I go through, I found it very important to have a doctor that didn't act like he didn't have time to speak with me. Good luck and let us know how it goes! At 01:33 PM 03/19/2000 EST, you wrote: >From: Freedoverc@... > >Hi everyone! > >I'm FINALLY heading to the endo on Tuesday morning, and want to go really >prepared. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2000 Report Share Posted March 20, 2000 Good luck tomorrow Jewls, and make sure you make him repeat himself until you know what he's saying! >It's been a longggggggg 3 months, can't believe my visit is FINALLY >tomorrow!!! > >Thanks for the help everyone! I'll let you know how it goes tomorrow morning! > >Jewls Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2003 Report Share Posted June 20, 2003 Hello everyone..I have been having a hard time so haven't written but tried to catch up today on the writings.. I started CPT11 three weeks ago..had one treatment the next week had low white count had to take neuprigon shots for 5 days and then had to wait till last week for another treatment...and went today for what was suppose to be another one...(3rd) well white count was reallllllllly low..so no treatment...To refresh your memory I had colon met to right adrenal gland...I had that biopsies about 5 weeks ago..and the man that did that has moved here from Cleveland clinic...I have since been talking to him about RFA on my adrenal gland..and he is waiting on his new equipment to be delivered the end of next week 27th....he says it is doable....my primary care physician says he is in favor but my onc. say they do not know enough about it to want to do it...wandering any opinions here on here..I want to do it...less tumor load the better in my mind...I am stage iv ....appreciate any thoughts either way..thanks..hugs,kaye kaye biggs colon cancer survivor cc resection 1/2000 liver resection 4/2002 RFA 4/2002 PLEASE HAVE YOUR SCOPES IF NOT FOR YOURSELF PLEASE DO IT AS A FRIEND TO ME!!!!!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2003 Report Share Posted June 21, 2003 Hi Kaye -- Good luck with your CPT11. I think it does help a person. My while counts fell a bit too when I was taking it. There seems to be a narrow therapeutic window. Is your hair falling out? Mine started coming out in clumps so I had it buzzed off. Then some people said to me, " You ARE a cancer patient!! " I would probably go with attempting to have the adrenal met taken off by RFA unless I felt that the practioner was too inexperienced and just wanted to experiment on me. Sometimes people get lucky and I always feel lucky. Where did you say your other met was? I would try to shrink them with CPT11, and then try to resect them or use RFA or SR. Once the disease is systemic, then I think that I would be inclined to call off the chemo and just enjoy my remaining days. Barry > Hello everyone..I have been having a hard time so haven't written but tried to catch up today on the writings.. > I started CPT11 three weeks ago..had one treatment the next week had low white count had to take neuprigon shots for 5 days and then had to wait till last week for another treatment...and went today for what was suppose to be another one...(3rd) well white count was reallllllllly low..so no treatment...To refresh your memory I had colon met to right adrenal gland...I had that biopsies about 5 weeks ago..and the man that did that has moved here from Cleveland clinic...I have since been talking to him about RFA on my adrenal gland..and he is waiting on his new equipment to be delivered the end of next week 27th....he says it is doable....my primary care physician says he is in favor but my onc. say they do not know enough about it to want to do it...wandering any opinions here on here..I want to do it...less tumor load the better in my mind...I am stage iv ...appreciate any thoughts either way..thanks..hugs,kaye > > > > > > kaye biggs > colon cancer survivor > cc resection 1/2000 > liver resection 4/2002 > RFA 4/2002 > > PLEASE HAVE YOUR SCOPES IF > NOT FOR YOURSELF PLEASE DO > IT AS A FRIEND TO ME!!!!!!! > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2003 Report Share Posted June 21, 2003 Hi Kaye, I agree with Barry about the RFA - assuming the surgeon has prior experience with this ( & a good track record - ask him!), then I would be pretty inclined to go for it. Chemo unfortunately is seldom successful in completely eradicating tumors, but there is a chance the RFA could do just that. Assuming the surgeon doesn't consider this a " difficult " surgery, there is probably little downside. <<my primary care physician says he is in favor but my onc. say they do not know enough about it to want to do it>> For whatever reason, oncologists are extremely conservative by nature. I get the feeling if they ran things, many patients who could possibly be cured with surgery would never get the chance! Sorry to hear about the Camptosar causing the low blood counts. Have you discussed the possibility of switching to Oxaliplatin with them? I think Oxal overall causes fewer side effects like this, and is at least as effective as Camptosar. It might be better to switch than miss too many Camptosar sessions due to low WBC if they can't get that under control soon. I hope you feel better soon, and as always am thinking of you & sending good vibes your way! Best Wishes, > > Hello everyone..I have been having a hard time so haven't written > but tried to catch up today on the writings.. > > I started CPT11 three weeks ago..had one treatment the next week > had low white count had to take neuprigon shots for 5 days and then > had to wait till last week for another treatment...and went today > for what was suppose to be another one...(3rd) well white count was > reallllllllly low..so no treatment...To refresh your memory I had > colon met to right adrenal gland...I had that biopsies about 5 weeks > ago..and the man that did that has moved here from Cleveland > clinic...I have since been talking to him about RFA on my adrenal > gland..and he is waiting on his new equipment to be delivered the > end of next week 27th....he says it is doable....my primary care > physician says he is in favor but my onc. say they do not know > enough about it to want to do it...wandering any opinions here on > here..I want to do it...less tumor load the better in my mind...I am > stage iv ...appreciate any thoughts either way..thanks..hugs,kaye Quote Link to comment Share on other sites More sharing options...
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