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Losing Hope
Recently, I've somewhat felt that I am losing hope in my fight against multiple myeloma. I am in my late 30's and have fought multiple myeloma since 2010. In that time, I've undergone two auto scts and enjoyed the last two years drug free, along with a remission. As of late, my numbers are slowly rising and the doctors are leaving it up to me if I want to have an allo. My father and brother are haplo matches I believe, but I'm starting a new job on Monday and my dr is upset that I'm starting a job and not getting an allo this fall. I am open to an allo around the new year, but I feel that multiple myeloma is always in the way of everything and I almost feel that cancer is low on my totem pole. Sorry for the rant.
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Guest1
Re: Losing Hope
Hello,
I understand how frustrating and discouraging it can be, but don't lose hope. I wish you the very best of outcomes in the treatment.
Alex
I understand how frustrating and discouraging it can be, but don't lose hope. I wish you the very best of outcomes in the treatment.
Alex
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: Losing Hope
Hi. I've had multiple myeloma since 2007 and had 2 stem cell transplants. I started to relapse late last year and began chemo with Kyprolis in January. I'm responding well. For me, an allo is not something I will consider due to questions about side effects and quality of life. I am happy with the alternatives of drugs that are now available, and in fact, I would probably have delayed stem cell transplants had I been diagnosed when these various drugs were available. I was diagnosed at 53 and I'm still going strong, so hang in there. It's frustrating, but definitely liveable with a quality of life you can enjoy. Good luck.
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micallie
Re: Losing Hope
Hi, your "rant" touched my heart as we are in a similar place. I was diagnosed NewYears 2009 and went thru Revlimid chemo, etc and one auto SCT in 2010 and then maintenance Rev until mid 2012. I have been chemo free since June 2012 and enjoying feeling semi-normal 
but in the last few months my #s have bee escalating and I find out in the next several weeks what my Drs recommend. I am older than you (early 50's), but feel just as you do, as I still work as a college counselor and had just begun to let myself see more students. Well, delete that idea, as my whites are nose-diving and I was just told of my M-spike. Hang in there, as there are so many multiple myeloma treatment options for all of us MM-ers . Live life optimistically, work a career you have passion for, take care of your health, and do lifesaving treatments! I will follow your comments and your status and wish you the best in all your coming treatments! Julie
but in the last few months my #s have bee escalating and I find out in the next several weeks what my Drs recommend. I am older than you (early 50's), but feel just as you do, as I still work as a college counselor and had just begun to let myself see more students. Well, delete that idea, as my whites are nose-diving and I was just told of my M-spike. Hang in there, as there are so many multiple myeloma treatment options for all of us MM-ers . Live life optimistically, work a career you have passion for, take care of your health, and do lifesaving treatments! I will follow your comments and your status and wish you the best in all your coming treatments! Julie -
Julie MM - Name: Julie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 30, 2009
- Age at diagnosis: 50
Re: Losing Hope
Maybe you can discuss other treatments, carfilzomib and pomalidomide. Don't know why he wants you to have an Allo on your first relapse. Don't give up hope and make your treatments the highest priority so you can continue in that new job for many years to come.
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GeorgeLJurak - Name: George Jurak
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 59
Re: Losing Hope
Well I brought up the fact that I would for the time being, try therapy when it is time and was told I am making the wrong descision. And this is coming from a well know multiple myeloma facility. Maybe I am wrong, but cancer does not revolve around my life and refuse to do an Allo just because I am "young". I feel like I cant even do my hobbies and ordinary dailynthings becuase this nonnense is looming overhead.
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Guest1
Re: Losing Hope
Sorry that you did not get a positive response to trying therapy. This is your choice for me quality over quantity is important I know no matter what I choose what the ending will be, meanwhile, I am choosing quality. My first multiple myeloma Dr. believed in less is more. He left but I will always be grateful to him and he was young and a recovering cancer patient. Remember you need to be captain of the ship everyone wants to be helpful and we need to take into consideration their views but in the end it's what you want maybe a second opinion would be helpful. My first Dr. believe in drugs my second was a sct DR. when I asked what happen to less is more she said I don't believe in that philosophy. My third Dr. encourage me to collect cells but when we had a heart to heart he has been very good to take the less is more approach. You will find your way their are counselors out there that specialize in chronic illness this may be a way to talk it out. blessings to you your multiple myeloma friend mary louise
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mollygolly
Re: Losing Hope
What a tough decision.! I'm not far enough down the road to give you much advice, but I can tell you that a haplo can be doable. I developed a secondary malignancy (AML) from my auto SCT to treat multiple myeloma. At that point all medical opinions were that I needed to do the haplo (or unrelated cord blood) in order to have a chance to cure the AML. My myeloma was decreased substantially by the auto but still present at that time.
After completing the chemo regimens for the AML, I had a haplo last October. The AML continues to be in CR, and my myeloma free light chain and IGG results appear normal for the first time. It took montHs for them to dwindle down. I don't have nearly the experience post transplant that you do, but the news is good so far. I think I'm VERY lucky to have such a positive Haplo result: some acute GVH but limited to a rash and some eye issues that have lingered now for many months. They haven't disabled me, and I am almost off immunosuppressants. I still have fatigue, and wasn't ready to even think about working a full day until about the nine or ten month stage. They say that you shouldn't really count on going back to work full time for up to a year after an allo. I'm also a good deal older than you (64).
If you don't want to go through this lengthy and imposing regimen now, it may make sense to take alternate treatments first to get/keep your levels down. It could be problematic to wait too long, BUT YOU NEED TO CONSULT WITH YOUR PHYSICIANS ABOUT ALL OF THAT. given your last post, i would definitely push to learn what options they see for you aside from the haplo. Lots to think about and worry about, but there are some hopeful opportunities in the pipeline. Please stay hopeful and positive, because you do have some good choices! My best to you!
After completing the chemo regimens for the AML, I had a haplo last October. The AML continues to be in CR, and my myeloma free light chain and IGG results appear normal for the first time. It took montHs for them to dwindle down. I don't have nearly the experience post transplant that you do, but the news is good so far. I think I'm VERY lucky to have such a positive Haplo result: some acute GVH but limited to a rash and some eye issues that have lingered now for many months. They haven't disabled me, and I am almost off immunosuppressants. I still have fatigue, and wasn't ready to even think about working a full day until about the nine or ten month stage. They say that you shouldn't really count on going back to work full time for up to a year after an allo. I'm also a good deal older than you (64).
If you don't want to go through this lengthy and imposing regimen now, it may make sense to take alternate treatments first to get/keep your levels down. It could be problematic to wait too long, BUT YOU NEED TO CONSULT WITH YOUR PHYSICIANS ABOUT ALL OF THAT. given your last post, i would definitely push to learn what options they see for you aside from the haplo. Lots to think about and worry about, but there are some hopeful opportunities in the pipeline. Please stay hopeful and positive, because you do have some good choices! My best to you!
Re: Losing Hope
It sounds like you would benefit from getting a 2nd or 3rd opinion from some other multiple myeloma specialists. Having an allo transplant is a huge decision. Your doctor is probably recommending it because you are so young and the statistics for successfully treating multiple myeloma with an allo are better in young people. But, you are the one who is in charge in the end. In order to make a balanced decision about what you want to do and when you want to do it can only be done with all of the information that may be available. Take the time to get another opinion.
The best to you in whatever you decide to do,
Nancy in Phila
The best to you in whatever you decide to do,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Losing Hope
Being that this is my first relapse, should this be considered as one step closer to dying or that I will?
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Guest1
12 posts
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