Hi Everyone,
I'm curious how many of you sought a 2nd opinion as far as treatment options are concerned? Do you feel it helped you make an easier decision or do you feel it just added to the confusion?
I'm very anxious to hear your responses.
Thanks,
Kim
I did not get a second opinion, I trusted my onc, only because I was in shock, was put on cybor d and responded immediately.
I wish you courage as you embark on this journey. There have been so many advances in the past years that should give you an extra measure of hope. When my wife was diagnosed just over a year ago, we did a lot of research, educated ourselves as you are now doing, spoke to quite a few physicians in both of our families. We learned that in most cases - worldwide - the treatment for a first instance of MM is generally the same. But getting as much information as possible doesn't mean you don't trust your oncologist/haematologist. Knowledge is power as my wife said. Also, you will learn about clinical trials that might be very valuable for you. She was fortunate enough to be included in a trial of carfilzomid which yielded excellent results and is now in a good remission. But if the cancer relapses, then finding the treatment which is exactly suitable becomes more important. Also, there is a lot of research into highly individualised treatments based on the very specific kind of MM you have. The Multiple Myeloma Research Foundation has a lot of information about this.
My local hem/onc told me I had 3 years to live. He sent me to Moffitt Cancer Center where I was dxed SMM with no treatment plan. Since there was such a discrepancy between my hem/onc and my MM specialist, I went to Dana Farber Cancer Institute for another opinion. The specialist there dxed me as MGUS and told me NOT to sign up for any clinical trials because I would likely never develop symptoms. I think a 2nd opinion is important, especially if your dx does not come from a top-ratred cancer facility or your doc is not a specialist.
Oh, I definitely think 2nd. opinions are important. My 1st. Dr. said, blood work o:k it drops when get older. Two tried to treat me for Arthritis, put me in P.T. until I broke bones, finally 4th. Dr. helped me. Did the MRI'S I begged for then bone marrow biopsy.
Kent said:
My local hem/onc told me I had 3 years to live. He sent me to Moffitt Cancer Center where I was dxed SMM with no treatment plan. Since there was such a discrepancy between my hem/onc and my MM specialist, I went to Dana Farber Cancer Institute for another opinion. The specialist there dxed me as MGUS and told me NOT to sign up for any clinical trials because I would likely never develop symptoms. I think a 2nd opinion is important, especially if your dx does not come from a top-ratred cancer facility or your doc is not a specialist.
Was your wife on Carfilzomib by itself? Reason I ask, I had stem cell transplant, went remission 2yrs. Relapse was put on Carfilzomib along w/ 10mg. Dexamethasone. It didn't work- had to put Revlimid w/ it which I'm not tolerating too well.
Just dropped from 15mg. to 5mg.Hope I can tolerate. Running out of options. Was on Pomalyst, couldn't take that cause kept stomach tore up, didn't work taking on empty stomach after stomach cancer w/ 75% stomach removed.
Madison
finem said:
I wish you courage as you embark on this journey. There have been so many advances in the past years that should give you an extra measure of hope. When my wife was diagnosed just over a year ago, we did a lot of research, educated ourselves as you are now doing, spoke to quite a few physicians in both of our families. We learned that in most cases - worldwide - the treatment for a first instance of MM is generally the same. But getting as much information as possible doesn't mean you don't trust your oncologist/haematologist. Knowledge is power as my wife said. Also, you will learn about clinical trials that might be very valuable for you. She was fortunate enough to be included in a trial of carfilzomid which yielded excellent results and is now in a good remission. But if the cancer relapses, then finding the treatment which is exactly suitable becomes more important. Also, there is a lot of research into highly individualised treatments based on the very specific kind of MM you have. The Multiple Myeloma Research Foundation has a lot of information about this.
Hi Madison,
I'm actually "the wife" Michael wrote about. I was on Carfilzomib plus 20 mg dexamethasone on days 1, 2, 8, 9, 15, 16 of each 28-day cycle, plus thalidomide 200 mg every day. I had four cycles of that and had achieved a VGP remission by cycle 2, Near Complete after 3 cycles. I tolerated it very well, was able to pretty much keep to my normal routine throughout (easier for me than for many since much of my work is from home). Following autologous stem cell transplant, I resumed with 4 more cycles of the same chemo, except the thalidomide was reduced to 50 mg daily. This was a clinical trial using carfilzomib/dex/thalidomide to treat newly diagnosed patients.
When did you start the Carfilzomib/dex, Madison? And when was the Revlimid added? Has it had any effect on your MM? Don't give up hope, there ARE other weapons in the arsenal, and I think even more in the pipeline. Check with Multiple Myeloma Research Foundation, I've found them to be very responsive and helpful. You can phone and speak with someone, or just comb through their website.
Good luck, and please keep me posted on how you're doing. I'll say a special prayer for you tonight.
Madison said:
Was your wife on Carfilzomib by itself? Reason I ask, I had stem cell transplant, went remission 2yrs. Relapse was put on Carfilzomib along w/ 10mg. Dexamethasone. It didn't work- had to put Revlimid w/ it which I'm not tolerating too well.
Just dropped from 15mg. to 5mg.Hope I can tolerate. Running out of options. Was on Pomalyst, couldn't take that cause kept stomach tore up, didn't work taking on empty stomach after stomach cancer w/ 75% stomach removed.
Madison
finem said:I wish you courage as you embark on this journey. There have been so many advances in the past years that should give you an extra measure of hope. When my wife was diagnosed just over a year ago, we did a lot of research, educated ourselves as you are now doing, spoke to quite a few physicians in both of our families. We learned that in most cases - worldwide - the treatment for a first instance of MM is generally the same. But getting as much information as possible doesn't mean you don't trust your oncologist/haematologist. Knowledge is power as my wife said. Also, you will learn about clinical trials that might be very valuable for you. She was fortunate enough to be included in a trial of carfilzomid which yielded excellent results and is now in a good remission. But if the cancer relapses, then finding the treatment which is exactly suitable becomes more important. Also, there is a lot of research into highly individualised treatments based on the very specific kind of MM you have. The Multiple Myeloma Research Foundation has a lot of information about this.
Dr, said, I can't qualify for clinical trials for 3 yrs. because of getting stomach cancer as 2nd. cancer. I'm down one yr. 2 more to go. Stomach cancer is showing o:k after 25 radiation treatments , only tolerated 3 wks. of chemo couldn't tolerate it. I was in remission w/ MM Had stem cell transplant 2 yrs. prior. Stomach cancer brought it out of remission. Now having problems w/ 2nd. chemo. Tolerate Carfilzomib o:k not the others.
Madison
Tammy said:
Hi Madison,
I'm actually "the wife" Michael wrote about. I was on Carfilzomib plus 20 mg dexamethasone on days 1, 2, 8, 9, 15, 16 of each 28-day cycle, plus thalidomide 200 mg every day. I had four cycles of that and had achieved a VGP remission by cycle 2, Near Complete after 3 cycles. I tolerated it very well, was able to pretty much keep to my normal routine throughout (easier for me than for many since much of my work is from home). Following autologous stem cell transplant, I resumed with 4 more cycles of the same chemo, except the thalidomide was reduced to 50 mg daily. This was a clinical trial using carfilzomib/dex/thalidomide to treat newly diagnosed patients.
When did you start the Carfilzomib/dex, Madison? And when was the Revlimid added? Has it had any effect on your MM? Don't give up hope, there ARE other weapons in the arsenal, and I think even more in the pipeline. Check with Multiple Myeloma Research Foundation, I've found them to be very responsive and helpful. You can phone and speak with someone, or just comb through their website.
Good luck, and please keep me posted on how you're doing. I'll say a special prayer for you tonight.
Madison said:Was your wife on Carfilzomib by itself? Reason I ask, I had stem cell transplant, went remission 2yrs. Relapse was put on Carfilzomib along w/ 10mg. Dexamethasone. It didn't work- had to put Revlimid w/ it which I'm not tolerating too well.
Just dropped from 15mg. to 5mg.Hope I can tolerate. Running out of options. Was on Pomalyst, couldn't take that cause kept stomach tore up, didn't work taking on empty stomach after stomach cancer w/ 75% stomach removed.
Madison
finem said:I wish you courage as you embark on this journey. There have been so many advances in the past years that should give you an extra measure of hope. When my wife was diagnosed just over a year ago, we did a lot of research, educated ourselves as you are now doing, spoke to quite a few physicians in both of our families. We learned that in most cases - worldwide - the treatment for a first instance of MM is generally the same. But getting as much information as possible doesn't mean you don't trust your oncologist/haematologist. Knowledge is power as my wife said. Also, you will learn about clinical trials that might be very valuable for you. She was fortunate enough to be included in a trial of carfilzomid which yielded excellent results and is now in a good remission. But if the cancer relapses, then finding the treatment which is exactly suitable becomes more important. Also, there is a lot of research into highly individualised treatments based on the very specific kind of MM you have. The Multiple Myeloma Research Foundation has a lot of information about this.
It's still worth contacting MM Research Foundation, they are involved not only in new treatments & clinical trials, but also as an information resource on all the treatment options currently available. They might be able to offer some suggestions that you could ask your doctor about. When did you start with the carfilzomib? How long will they keep you on that if it's not having results? If you're having trouble tolerating Revlimid, has your doctor considered switching you to thalidomide? (Revlimid is a derivative of thalidomide.) That's what I took, I tolerated it quite well, and taking it in combination with carfilzomib and dexamethasone was very effective for me. I understand that there are many strains of MM and what is effective for one might not work so well for another, but it's something to ask your doctor about.
Madison said:
Dr, said, I can't qualify for clinical trials for 3 yrs. because of getting stomach cancer as 2nd. cancer. I'm down one yr. 2 more to go. Stomach cancer is showing o:k after 25 radiation treatments , only tolerated 3 wks. of chemo couldn't tolerate it. I was in remission w/ MM Had stem cell transplant 2 yrs. prior. Stomach cancer brought it out of remission. Now having problems w/ 2nd. chemo. Tolerate Carfilzomib o:k not the others.
Madison
Tammy said:Hi Madison,
I'm actually "the wife" Michael wrote about. I was on Carfilzomib plus 20 mg dexamethasone on days 1, 2, 8, 9, 15, 16 of each 28-day cycle, plus thalidomide 200 mg every day. I had four cycles of that and had achieved a VGP remission by cycle 2, Near Complete after 3 cycles. I tolerated it very well, was able to pretty much keep to my normal routine throughout (easier for me than for many since much of my work is from home). Following autologous stem cell transplant, I resumed with 4 more cycles of the same chemo, except the thalidomide was reduced to 50 mg daily. This was a clinical trial using carfilzomib/dex/thalidomide to treat newly diagnosed patients.
When did you start the Carfilzomib/dex, Madison? And when was the Revlimid added? Has it had any effect on your MM? Don't give up hope, there ARE other weapons in the arsenal, and I think even more in the pipeline. Check with Multiple Myeloma Research Foundation, I've found them to be very responsive and helpful. You can phone and speak with someone, or just comb through their website.
Good luck, and please keep me posted on how you're doing. I'll say a special prayer for you tonight.
Madison said:Was your wife on Carfilzomib by itself? Reason I ask, I had stem cell transplant, went remission 2yrs. Relapse was put on Carfilzomib along w/ 10mg. Dexamethasone. It didn't work- had to put Revlimid w/ it which I'm not tolerating too well.
Just dropped from 15mg. to 5mg.Hope I can tolerate. Running out of options. Was on Pomalyst, couldn't take that cause kept stomach tore up, didn't work taking on empty stomach after stomach cancer w/ 75% stomach removed.
Madison
finem said:I wish you courage as you embark on this journey. There have been so many advances in the past years that should give you an extra measure of hope. When my wife was diagnosed just over a year ago, we did a lot of research, educated ourselves as you are now doing, spoke to quite a few physicians in both of our families. We learned that in most cases - worldwide - the treatment for a first instance of MM is generally the same. But getting as much information as possible doesn't mean you don't trust your oncologist/haematologist. Knowledge is power as my wife said. Also, you will learn about clinical trials that might be very valuable for you. She was fortunate enough to be included in a trial of carfilzomid which yielded excellent results and is now in a good remission. But if the cancer relapses, then finding the treatment which is exactly suitable becomes more important. Also, there is a lot of research into highly individualised treatments based on the very specific kind of MM you have. The Multiple Myeloma Research Foundation has a lot of information about this.