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AlCalGal
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Posted: Sat Jul 12th, 2008 08:00 pm |
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My husband was diagnosed with multiple myeloma in January. He has recieved wonderful treatment and has responded extremely well to medications (Thalomid and steroids). "We" are scheduled for a stem cell transplant (his own cells) on July 23rd. We start the Nupogen shots tomorrow (Sunday). Yesterday we went to get the results of his tests and sign the consent forms. Well, they told us he is "in remission", "unconfirmed remission". Are we going to put a man in remission through the shadow of the valley of death? I am confused?!!! Would some sort of other treatment be better at this point? I can't get a good answer from the doctors?
My husband said he cannot cure himself and he is not going to question their judgment? Should we?
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drcla
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Posted: Sat Jul 12th, 2008 10:34 pm |
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Hi AlCalGal
First, this is great news that he is healthy enough to move forward with the transplant. My husband was diagnosed in 2007. He received four months of chemo and was in remission. He never stopped working or going to the gym. We have received two transplants and are extremely happy and fortunate. He was in remission after the four months of chemo, but we never thought about not following through with the transplant. I administered the shots every morning so that the home nurse would not have to come. This gave me a sense of normalcy. I am a teacher and never thought I would be able to do something like this, but I did.
I would absolutely go through with the transplant because of the nature of myeloma. Even with the transplant, and yes two, there are no guarantees. This is a miracle for myeloma patients. We also used alternatives treatments along with traditional meds the whole time.
If you would like to talk today or tonight, send a reply and we can exchange numbers or email and then exchange numbers.
During the four months of chemo my husband never vomited, loss weight, and we finally shaved his hair a week before the transplant because they promised his hair would fall out with the transplant chemo.
Please don't hesitate, move forward. If this were any other type of cancer, maybe not, but this is myeloma and we have been told it is guaranteed to come back. We had a mentor throughout this ordeal and he has been in remission for ten years and he also said to move forward with both transplants. The second one is just cushion incase there is a small amount of protein left that goes undetected.
My husband still has a small amount left and is on a maintenance plan, a small amount of Revlimid, which we were very lucky to get during his four months. For every side effect they said he would have, I searched for an alternative to counter it.
We have been so blessed. Please email me if there is anything I can help you with. Hang in there and stay positive for him no matter what for his mental wellness.
Sincerely,
drcla
Last edited on Sat Jul 12th, 2008 10:57 pm by drcla
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AlCalGal
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Posted: Sat Jul 12th, 2008 11:04 pm |
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Dear drcal
Thank you, thank you, thank you. Just hearing that someone proceeded with the transplant when in remission was a BIG relief!!! My husband only had one chemo treatment, then went on the thalidomide and steroids. Did your husband have both kind of transplants? This one will be his own stem cells. Then they talked about a sibling or non-related donor. My husband retired in October at 65, was having back pain then, was diagnosed in January. We live about two hours away from the treatment facility. I really worked hard to get him in because I (we) knew what he had because his Dad died from the same disease exactly 20 years ago. They have really come a long way since then. His Dad was treated at Vanderbilt/Veterans hospital and lived 8 years after being diagnosed. He had several experimental procedures and I hope they are helping all of us today! Our doctor said that in rare cases this is inherited, ours is one of those rare cases. So we are not strangers to Multiple Myeloma!
Thanks,
AlCalGal
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drcla
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Posted: Sat Jul 12th, 2008 11:16 pm |
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Yes he also did autologous, using his own stem cells. There is less chance of rejection. My husband was diagnosed at age 47. Please let me know if you would like to talk via phone. This is my first time chatting and I teach business classes at school. Needless to say, I am on the computer all day and rarely check my email at home.
It is very rare to inherit MM.
Sincerely
drcla
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Annick
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Posted: Mon Jul 14th, 2008 12:37 am |
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Hi AlCalGal,
I'm glad you found our chat room and have been able to share your personal story. As the research coordinator for the program, I wanted to offer my two cents of advice/input. First of all, don't ever worry about questioning medical advice (within reason, of course.) Every patient and caregiver has the right to be able to make informed treatment decisions, and that can only arise from having all of your questions, concerns, and doubts addressed. Your husband is very lucky to have you.
With regard to your question, please remember two things: 1). there are several gradations of remission or response (i.e. complete remission/response, near-complete remission/response, very good partial remission/response, partial remission/response, etc), and 2). the objective of any good myeloma treatment plan is not only to achieve a complete remission but also to sustain it. Thus, I would definitely encourage you to inquire about the specifics of his remission. However, even if he's been able to achieve a complete remission initially, the disease is usually never completely wiped out, and the intent with one transplant or tandem transplant is to destroy that 1% or less of lingering myeloma cells that are still present in the body. In other words, a status of complete remission is a little bit deceiving, because a patient can still have some disease present on a molecular level that is simply too small for current blood tests to detect. That's why it's so important for patients to keep on receiving treatment, because without that, it will only be a matter of time before the disease becomes active again and the complete remission is lost. I hope that makes sense. Best of luck to you and your husband as he undergoes his autologous transplant. You will be in our thoughts!
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confusedmarcie
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Posted: Mon Jul 14th, 2008 02:37 am |
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| I am just as confused as you. My dad was diagnosed a few weeks ago and started chemo/steroid and we're waiting for the revlimid to arrive in the mail. My dad wants to do everything to fight this mm. He is a stage 3,but kidney's are ok and overall his health is good before this. Hearing some stories have made me feel more hopeful that he will stay around alitlle longer. God Bless and have faith!
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AlCalGal
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Posted: Mon Jul 14th, 2008 04:48 am |
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Dear confusedmarcie,
I hope your father does as well as my husband has. We never thought we would be this far this soon! He also is in very good physical health and no kidney damage. He was also in stage 3 when diagnosed in January, now after only one chemo treatment, several months of Thalidomide and dex, he is in remission!!!??? The sad part is he doesn't have much of a spine left! We looked at the MRI and he has lesions and collapsed vertebrae. He went from 5 feet 9 to not quite 5 feet 5! But they say down the road there are procedures to help that too!! We are truly blessed!!! There are so many more options for treatment than when my father-in-law was diagnosed nearly 30 years ago! And to think back then this was considered a rare form of cancer!!! It doesn't seem all that rare now!
It is a bit scary going into the stem cell "transplant" procedure. But I understand a bit more now, and realize that "remission" with MM probably doesn't mean a lot, just confusion!!! But it also means that my husband has responded well to treatment and that is the KEY to managing this disease. Like I said I hope your dad responds well to his treatment. Blessings and prayers go out to you and yours. One day at a time!
Today is a gift, that's why they call it the present!
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