HER2 Support Group Forums - View Single Post

07-18-2008, 08:07 PM

Hi everyone…Yes I will finally hear the song
“No more chemo … chemo for you
Here’s a salute for all you’ve been through.
And now we bid you adieu…
no more chemo, chemo for you…!!!
I have waited 8 years to have that sung to me and it keeps going on and on in my brain since last night on the plane home…Boy they had better sing it to me lol after all the times I have sung with them for others!!!
I will try to explain why I am coming off my cancer meds. My doctor said I could stop both Herceptin and Aromasin they feel that even if I am very estrogen and progesterone Positive ( I was +++ for both,) with my response to my chemo Adriamycin/Cytoxin, Taxol, and Herceptin, and especially since the large liver metz did not come back ... I am not needing either... He said something to the effect that in trials they have been doing the past two years, they see no evidence that the two needed to be used in conjunction with each other, For me…. the targeted drug, Herceptin and chemo drugs did what was necessary. So the Aromasin is being stopped, My Herceptin is stopped, since I have remained NED this long.
I hope he puts it better in the letter he sends, and I will try to get it in here as soon as I receive it.
I have been NED since the chemo meds. I have had a very good response to them... and the time I have been on Herceptin (almost 8 years,) I have been building up antibodies to the Herceptin and have had some major responses to it ...
Two years ago I saw him ... at that time it was not certain to stop, there was no definitive testing or trials to go on, I could either stop or go on, start Tykerb ?… they were willing to put me on just the Tykerb? but could not tell me what to choose? Since they had no good answers, I decided to continue on Herceptin... this being given (with his suggestion), one dose every two weeks instead of once a week, this was double diluted and run for 2 1/2 hours with IV Benedryl and two extra strength tylenol… since I got an immediate Headache.
I did ok on this, but about a month and 1/2 ago I had a very bad response again and stopped for a 6-week rest and made an apt to see him again. I have had reactions of severe CHF...about 4 years into the drug.. And my ejection fraction went to 21. I am now on lots of cardiac meds. I am up to 70 ejection fraction but am still taking all the cardiac meds, my bp remains elevated.
I have also, since starting the Aromasin, had a fast and large fall in bone density.
After switching fromTamoxifen to Aromasin...In matter of two years I went from a young woman’s bones to my age last year ( I am now 60 lol) and have a bone density scheduled next week to see where we are now.
Last year I had neck surgery, replacing 3 of 5 bones in my spine at cervical 4 5 6( others were very bad, but for the ability to move we could only replace these.) Two grew bone and one cage is empty. Now I, have to go back and get that fixed.
I have lots of pain in legs and lower back and aches in joints. I walk like and old lady if I do not take my pain meds (Ketoprofen) twice a day (which has my pcp going in circles) She is worried about kidney failure. My arms and hands zing hot fiery nerves like lightening bolts, and I get severe numbness from the shoulder through hands especially on left side. Therefore I cannot sleep, I cannot turn my head side-to-side or forward to back because things get worse. I drop things have very bad sense of balance and fall, easily, or trip. With my bones loosing calcium, that is just asking for trouble.
Plus all the other “little things” like runny nose, tearing eyes, crusty bloody nose, mouth sores, bad nails and hair, GERD. Flu like symptoms and severe cramps all over, (Especially the first week after Herceptin), oh and I also crash a couple days, cannot move and do anything even if the world were coming to an end lol…this last time it took me three weeks to be able to get out of bed and be me again.. etc etc etc.
Up until now I have been very happy to have any side effects just to continue to be alive and with my family…but now I have a choice.
So , I am definitely planning that getting off these meds will definitely change some of my symptoms (at least the every two week response to the Herceptin). And that I may eventually grow better bones so my next spine surgery will work, also that my spine will quit disintegrating
and many meds will go away. I hate that big handful every morning and evening…
I was told to take vitamin D, calcium and get out in the sun 15 min a day instead of starting on the big calcium replacement drugs.
Vitamins will be all my med intake in a time in the near future! I eat lots of highly endowed with antioxidants, colored fruits, and vegetables (mushrooms of all kinds included)
I hope this helps to answer your questions. I will definitely try to explain better why off both meds at the same time when I get the letter... sorry chemo brain in use here…. uggg

Hugs and love

Marily : ) definitely dancing with NED.

07-18-2008, 08:07 PM	#69
Unregistered Guest Posts: n/a	Dancing with NED from Marily I cannot get in with my password!!! Hi everyone…Yes I will finally hear the song “No more chemo … chemo for you Here’s a salute for all you’ve been through. And now we bid you adieu… no more chemo, chemo for you…!!! I have waited 8 years to have that sung to me and it keeps going on and on in my brain since last night on the plane home…Boy they had better sing it to me lol after all the times I have sung with them for others!!! I will try to explain why I am coming off my cancer meds. My doctor said I could stop both Herceptin and Aromasin they feel that even if I am very estrogen and progesterone Positive ( I was +++ for both,) with my response to my chemo Adriamycin/Cytoxin, Taxol, and Herceptin, and especially since the large liver metz did not come back ... I am not needing either... He said something to the effect that in trials they have been doing the past two years, they see no evidence that the two needed to be used in conjunction with each other, For me…. the targeted drug, Herceptin and chemo drugs did what was necessary. So the Aromasin is being stopped, My Herceptin is stopped, since I have remained NED this long. I hope he puts it better in the letter he sends, and I will try to get it in here as soon as I receive it. I have been NED since the chemo meds. I have had a very good response to them... and the time I have been on Herceptin (almost 8 years,) I have been building up antibodies to the Herceptin and have had some major responses to it ... Two years ago I saw him ... at that time it was not certain to stop, there was no definitive testing or trials to go on, I could either stop or go on, start Tykerb ?… they were willing to put me on just the Tykerb? but could not tell me what to choose? Since they had no good answers, I decided to continue on Herceptin... this being given (with his suggestion), one dose every two weeks instead of once a week, this was double diluted and run for 2 1/2 hours with IV Benedryl and two extra strength tylenol… since I got an immediate Headache. I did ok on this, but about a month and 1/2 ago I had a very bad response again and stopped for a 6-week rest and made an apt to see him again. I have had reactions of severe CHF...about 4 years into the drug.. And my ejection fraction went to 21. I am now on lots of cardiac meds. I am up to 70 ejection fraction but am still taking all the cardiac meds, my bp remains elevated. I have also, since starting the Aromasin, had a fast and large fall in bone density. After switching fromTamoxifen to Aromasin...In matter of two years I went from a young woman’s bones to my age last year ( I am now 60 lol) and have a bone density scheduled next week to see where we are now. Last year I had neck surgery, replacing 3 of 5 bones in my spine at cervical 4 5 6( others were very bad, but for the ability to move we could only replace these.) Two grew bone and one cage is empty. Now I, have to go back and get that fixed. I have lots of pain in legs and lower back and aches in joints. I walk like and old lady if I do not take my pain meds (Ketoprofen) twice a day (which has my pcp going in circles) She is worried about kidney failure. My arms and hands zing hot fiery nerves like lightening bolts, and I get severe numbness from the shoulder through hands especially on left side. Therefore I cannot sleep, I cannot turn my head side-to-side or forward to back because things get worse. I drop things have very bad sense of balance and fall, easily, or trip. With my bones loosing calcium, that is just asking for trouble. Plus all the other “little things” like runny nose, tearing eyes, crusty bloody nose, mouth sores, bad nails and hair, GERD. Flu like symptoms and severe cramps all over, (Especially the first week after Herceptin), oh and I also crash a couple days, cannot move and do anything even if the world were coming to an end lol…this last time it took me three weeks to be able to get out of bed and be me again.. etc etc etc. Up until now I have been very happy to have any side effects just to continue to be alive and with my family…but now I have a choice. So , I am definitely planning that getting off these meds will definitely change some of my symptoms (at least the every two week response to the Herceptin). And that I may eventually grow better bones so my next spine surgery will work, also that my spine will quit disintegrating and many meds will go away. I hate that big handful every morning and evening… I was told to take vitamin D, calcium and get out in the sun 15 min a day instead of starting on the big calcium replacement drugs. Vitamins will be all my med intake in a time in the near future! I eat lots of highly endowed with antioxidants, colored fruits, and vegetables (mushrooms of all kinds included) I hope this helps to answer your questions. I will definitely try to explain better why off both meds at the same time when I get the letter... sorry chemo brain in use here…. uggg Hugs and love Marily : ) definitely dancing with NED.