I am now booked for my stem cell collection on January 19. As it gets closer and I read the remission posts, I get more nervous that it " won't work".
I was diagnosed in September 2014 and will have the actual transplant in February. Does anyone know the percentages for success? In my mind, success has sort of been automatic.
Also, my cholesterol has gone sky high and I have never had a problem with it at all before. My doctor didn't mention it so he must not be too worried. I only noticed when I fully read my bloods when I got home.
Now I don't know if I am just obsessing !..?
It can sometimes be difficult to talk to those closest as it just upsets them, and I know I won't see either doctor alone until after the 100 days post transplant. It can be difficult to find the opportunity to ask a doctor the hard questions.
Cheers,
Sharon
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Sharon01 - Name: Sharon
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 48
Re: What are the odds for a successful transplant?
G'day Sharon,
One thing that I have worked out for myself with this disease is that stats and odds and everything else are all up in the air when it comes to individual results or potential results. You won't know or can't predict any treatment outcomes. Just because something doesn't work for person 1 does not mean it won't work for you, and vice versa. So the decision for you is whether you are prepared to not try things, or if you risk it.
I won't lie to you, a transplant is a big deal and the lead-up for me with the harvesting, etc., was probably worse then the two-week stay in hospital and to have the high-dose melphalan. Recovery was slow but doable.
It is my opinion that a lot of the treatments we receive are for the most part experimental, as no one seems to be able or willing to say if the treatments will or won't work for individuals. Nonetheless, can we afford not to experiment? I suppose that is the million dollar question. What's worse: The disease or the treatment?
As for it being hard to talk to those close ... yes, it is. How can they even begin to understand a disease which we, the sufferers, don't understand? Personally, I keep discussions with my family about my illness to the bare basics. And, much like you have done, air my thoughts, frustrations, and questions on this forum.
No doubt you are probably pretty nervous about the next few weeks. You'll be alright. Don't overthink it. It is what it is. When you are really feeling like crap, and you will, remember that tomorrow is another day and you will feel a little better everyday. As to the final outcome ... only time will tell.
I also find it hard to get answers from my doctors mostly because I don't know what to ask them. Again, that is when this forum is really helpful.
Good luck, Vic
One thing that I have worked out for myself with this disease is that stats and odds and everything else are all up in the air when it comes to individual results or potential results. You won't know or can't predict any treatment outcomes. Just because something doesn't work for person 1 does not mean it won't work for you, and vice versa. So the decision for you is whether you are prepared to not try things, or if you risk it.
I won't lie to you, a transplant is a big deal and the lead-up for me with the harvesting, etc., was probably worse then the two-week stay in hospital and to have the high-dose melphalan. Recovery was slow but doable.
It is my opinion that a lot of the treatments we receive are for the most part experimental, as no one seems to be able or willing to say if the treatments will or won't work for individuals. Nonetheless, can we afford not to experiment? I suppose that is the million dollar question. What's worse: The disease or the treatment?
As for it being hard to talk to those close ... yes, it is. How can they even begin to understand a disease which we, the sufferers, don't understand? Personally, I keep discussions with my family about my illness to the bare basics. And, much like you have done, air my thoughts, frustrations, and questions on this forum.
No doubt you are probably pretty nervous about the next few weeks. You'll be alright. Don't overthink it. It is what it is. When you are really feeling like crap, and you will, remember that tomorrow is another day and you will feel a little better everyday. As to the final outcome ... only time will tell.
I also find it hard to get answers from my doctors mostly because I don't know what to ask them. Again, that is when this forum is really helpful.
Good luck, Vic
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: What are the odds for a successful transplant?
Well said Vic!
Sharon, you'll be fine. Stay positive and positive things will happen!
Kully
Sharon, you'll be fine. Stay positive and positive things will happen!
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: What are the odds for a successful transplant?
Hi Sharon,
Vic has given you an excellent reply. I second everything she said!
Let me add a little data, though. These data come from a presentation this fall by Dr. David Vesole of the John Theurer Cancer Center in Hackensack, NJ. He cited two large trials (IFM 90 and MRC VII) that together showed higher response rates, longer remission duration, and improved survival by 1-2 years for patients who received high dose melphalan and an auto SCT as opposed to "conventional chemotherapy." (I didn't make a note of what the conventional chemo was though.)
Dr. Vesole also mentioned current trials that show approximately 30% of ASCT patients are in continuous remission beyond 10 years. Recent results coming out of Arkansas are also encouraging. See, for example, this journal article by the researchers at Arkansas, which also is discussed in this forum thread).
One other thing from my own experience. My M-spike did not budge from right before my SCT to the Day +90 test - 0.4 both times. However, with further consolidation and maintenance therapy, I achieved sCR and MRD negative status a little over 1 year after the SCT. So ... was the SCT "successful" in my case? I don't know. And I don't care a lot at this point, because that's the wrong question to ask, in my opinion. What matters to me is that the overall treatment protocol has been successful so far.
Best wishes to you. As Kully said, "Stay positive and positive things will happen!"
Mike
Vic has given you an excellent reply. I second everything she said!
Let me add a little data, though. These data come from a presentation this fall by Dr. David Vesole of the John Theurer Cancer Center in Hackensack, NJ. He cited two large trials (IFM 90 and MRC VII) that together showed higher response rates, longer remission duration, and improved survival by 1-2 years for patients who received high dose melphalan and an auto SCT as opposed to "conventional chemotherapy." (I didn't make a note of what the conventional chemo was though.)
Dr. Vesole also mentioned current trials that show approximately 30% of ASCT patients are in continuous remission beyond 10 years. Recent results coming out of Arkansas are also encouraging. See, for example, this journal article by the researchers at Arkansas, which also is discussed in this forum thread).
One other thing from my own experience. My M-spike did not budge from right before my SCT to the Day +90 test - 0.4 both times. However, with further consolidation and maintenance therapy, I achieved sCR and MRD negative status a little over 1 year after the SCT. So ... was the SCT "successful" in my case? I don't know. And I don't care a lot at this point, because that's the wrong question to ask, in my opinion. What matters to me is that the overall treatment protocol has been successful so far.
Best wishes to you. As Kully said, "Stay positive and positive things will happen!"
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: What are the odds for a successful transplant?
Thanks for the wise words I will stay with my thought process of 1,2,3:
1. Got sick
2. Get treatment
3. Be well
1. Got sick
2. Get treatment
3. Be well
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Sharon01 - Name: Sharon
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 48
Re: What are the odds for a successful transplant?
Dear Sharon01,
I will be wishing you the very best as you proceed to your ASCT in February. I will also be having my ASCT during February, too. So we can both be wishing each other the best of success for an awesome outcome. Good luck to you.
I will be wishing you the very best as you proceed to your ASCT in February. I will also be having my ASCT during February, too. So we can both be wishing each other the best of success for an awesome outcome. Good luck to you.
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CabinGirl - Who do you know with myeloma?: Self
- When were you/they diagnosed?: Sept. 2014
- Age at diagnosis: 57
Re: What are the odds for a successful transplant?
I wish both of you the very best of luck with your transplants. It is a means to an end -- keep that in mind as you go through the process. You will come out the other side better! When I was in the hospital with my transplant, I kept saying to myself "this too shall pass." And so it does.
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