I am looking for some feed back from anybody who would like to give it.
I have had multiple myeloma for about a year and a half. I went through the process to collect stem cells, it didn't go very good. I was only able to collect 5 million cells the doctor wanted me to collect 20 million. because I was in such bad shape it was decided to go to a vrd treatment. I have been responding very well to this treatment.
My doctor now wants to go back and try to do the collection again, my question is since i am doing so well on the vrd treatment do i just keep doing what i am doing or should i do the go through the process of collection.
One other thing i had a gene array test done and it puts me in the low risk group, does this make a difference on how to approach this decision.
Thanks,
Marvin
Forums
10 posts
• Page 1 of 1
Re: VRD or stem cell transplant?
I does not hurt to collect the stem cells. You can have them frozen and available when and if you need them later. In the meantime you can stay the course. Since you are low risk and are responding to treatment there is no rush to do a SCT.
I went on VRD 4 1/2 years ago and am now on maintenance with just VD once every two weeks. I did not go through the SCT and am an avid cyclist and work full time.
Each decision is individual, but the fact that you are low risk with protocol that is working is great. Perhaps after a few months if things remain good you can do as I did and start talking to your oncologist about backing down the drugs.
Ron
I went on VRD 4 1/2 years ago and am now on maintenance with just VD once every two weeks. I did not go through the SCT and am an avid cyclist and work full time.
Each decision is individual, but the fact that you are low risk with protocol that is working is great. Perhaps after a few months if things remain good you can do as I did and start talking to your oncologist about backing down the drugs.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: VRD or stem cell transplant?
i appreciate you taking the time to respond ron. i also like the though of reducing my drug intake.
marvin
marvin
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gmarv54
Re: VRD or stem cell transplant?
Since you are doing better now, your oncologist must have suggested to go through apheresis for stem cell collection, so that this time more stem cells could be harvested for use if and when you need transplant in future. It may be a good idea to consider.
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pym - Name: pym
- Who do you know with myeloma?: spouse
- When were you/they diagnosed?: July 2011
Re: VRD or stem cell transplant?
My take on it would be that given the fact you need as many good cells as possible you should do it when you can. If you take a turn for the worse later you will have the cells to use.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: VRD or stem cell transplant?
Ron,
Did you have the collection done, if not why not? If you did how will you decide to go and have the transplant done? Any specific criteria like last resort or other things?
thanks
marvin
Did you have the collection done, if not why not? If you did how will you decide to go and have the transplant done? Any specific criteria like last resort or other things?
thanks
marvin
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gmarv54
Re: VRD or stem cell transplant?
Collection was done and can be used if I decide to have SCT upon relapse. It's been over 4 1/2 years and no relapse.
I am on maintenance. If the numbers start to climb, I likely will try adjusting the dosage etc before doing the transplant. I just would keep all optons available.
Ron
I am on maintenance. If the numbers start to climb, I likely will try adjusting the dosage etc before doing the transplant. I just would keep all optons available.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: VRD or stem cell transplant?
Ron I think it was a smart move to draw stem cells while you are in remission. The SCT is a treatment, and if you don't need it now I believe it's best to keep it in reserve.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: VRD or stem cell transplant?
ron was you on the maintenance program when you had the collection done. also what kinds of process did you have to go thru to do the procedure. did you have to ramp up treatment.
i appreciate any information that anybody else has to share.
thanks marvin
i appreciate any information that anybody else has to share.
thanks marvin
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gmarv54
Re: VRD or stem cell transplant?
Marvin I was off of Velcade and in remission when I started my SCT. The first step was an evaluation to see if I was eligible, in other words if they thought the procedure would be a success.
My next journey was a week before the event for multiple tests and drawing the stem cells. The stem cell draw was about 3 hours in a chair hooked to a machine, the time was determined by the number of SC's. I was told it could take up to 4 days to draw the required number, but one was all I needed to draw enough for 2 transplants.
I entered the hospital a week later and left 18 days later much weaker and having eating problems, but overall not really feeling too bad.
My next journey was a week before the event for multiple tests and drawing the stem cells. The stem cell draw was about 3 hours in a chair hooked to a machine, the time was determined by the number of SC's. I was told it could take up to 4 days to draw the required number, but one was all I needed to draw enough for 2 transplants.
I entered the hospital a week later and left 18 days later much weaker and having eating problems, but overall not really feeling too bad.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
10 posts
• Page 1 of 1