Hello All,
My recent change of treatment from Revlimid / dex to Velcade / dex was due to an allergic reaction from the Revlimid. I started Velcade on days 1, 4, 8 and 11 with 10 days off. I like those 10 days off, and the injections are no big deal.
But with this change in treatment comes the possibility of neuropathy or who knows what. So my planning for a stem cell harvest and storage for a future transplant has been somewhat altered. My local oncologist has instructed me as to some signs of neuropathy and basically said it will happen at some point.
This has me concerned as far as doing a cell harvest first and transplant later or doing both at one time. I have so many commitments over the next four to six months that I thought to do the cell harvest first, then schedule the transplant later. At least have that part of the process done. I take care of all my mother's financial needs as she is in a board and care facility . I just sold her home and in the process of selling a small piece of property that she co-owns with my cousins to pay for her care. It's a stressful time selling everything that has taken my mother a lifetime to work for.
My oncologist feels getting the cells harvested soon is very important, but the transplant hospital has told me that, since I have done so well on my treatments, I could put off the harvest / transplant until the middle of next year, but suggested to do a cell harvest and transplant at one time. However, it would be my decision. My wife thinks that I should just do both at one time and not go back and forth for each one.
Any input would be greatly appreciated.
Castaway
Forums
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Stem cell harvest now, or harvest & SCT later?
Hi George, I guess that the logistics of having the stem cell harvest/transplant done close together in time may have to do with inserting a central venous line. I had both of those done within about six weeks. The harvest was in early December, and the transplant was in mid January. The time of rest between the procedures was helpful to me. I had the CVL (central line) in until about late March or early April, as I recall. It was enough of a nuisance having that line in that I wouldn't have wanted to go thru the insertion / removal procedure twice.
But it could be that you would be getting a 'PORT', which is said to be more comfortable than a line.
The other consideration for the harvesting was that I needed to be as close to a remission as possible. After four cycles of Velcade/dex, that was the case. I was getting some neuropathy at that point, so was glad to get off of those treatments at the time.
Guess I was fortunate to be able to drop out of other commitments then and just focus on my treatments.
Hope that helps!
But it could be that you would be getting a 'PORT', which is said to be more comfortable than a line.
The other consideration for the harvesting was that I needed to be as close to a remission as possible. After four cycles of Velcade/dex, that was the case. I was getting some neuropathy at that point, so was glad to get off of those treatments at the time.
Guess I was fortunate to be able to drop out of other commitments then and just focus on my treatments.
Hope that helps!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Stem cell harvest now, or harvest & SCT later?
Nancy,
Thank you for your experience with the cell harvest / transplant. I hope all is going well for you.
I was told that I would have a central line. My transplant hospital said the same thing about having the line put in and removed twice. I live about 4 1/2 hours away from the transplant hospital so that really plays into my decision also (hotel stay, my wife having to take time off from work and the expense of going back and forth multiple times to the hospital).
On Monday, I will be starting my 3rd round of Velcade/dex. I have not been told what the transplant hospital is looking for as far as what my numbers need to be, but this treatment seems to be going well so far. Just pray it continues that way.
I will be making a list of questions for my local oncologist and the transplant hospital about my current treatment and how long I can wait to do the harvest / transplant due to my situation. My oncologist works with the transplant hospital so I will ask them to contact each other and possibly give me their combined feedback and help my decision making.
Thank You, Castaway
Thank you for your experience with the cell harvest / transplant. I hope all is going well for you.
I was told that I would have a central line. My transplant hospital said the same thing about having the line put in and removed twice. I live about 4 1/2 hours away from the transplant hospital so that really plays into my decision also (hotel stay, my wife having to take time off from work and the expense of going back and forth multiple times to the hospital).
On Monday, I will be starting my 3rd round of Velcade/dex. I have not been told what the transplant hospital is looking for as far as what my numbers need to be, but this treatment seems to be going well so far. Just pray it continues that way.
I will be making a list of questions for my local oncologist and the transplant hospital about my current treatment and how long I can wait to do the harvest / transplant due to my situation. My oncologist works with the transplant hospital so I will ask them to contact each other and possibly give me their combined feedback and help my decision making.
Thank You, Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Stem cell harvest now, or harvest & SCT later?
Hi George -
Quick question: are you getting subcutaneous or IV Velcade? From what I understand, the subcutaneous route is much less likely to produce neuropathy than IV (or at least, it will take longer for the neuropathy to develop).
Quick question: are you getting subcutaneous or IV Velcade? From what I understand, the subcutaneous route is much less likely to produce neuropathy than IV (or at least, it will take longer for the neuropathy to develop).
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Stem cell harvest now, or harvest & SCT later?
Hi Mike,
Thanks for the reply. I am getting subQ injections. I hate to jinx myself but they are going pretty well so far. As I said in my post, it's nice having 10 days off between cycles (unlike Revlimid that I had 21 days on, with 7 off).
After being on Revlimid and having to stop due to a severe rash, I am a little nervous about something going wrong with the Velcade. Although my oncologist says that most people tolerate subQ Velcade really well, some elderly ladies getting Velcade that he treats have been on it for nearly two years. The only small thing that I have found is that I feel a little sluggish the day after the injection but it's not a big deal at all.
My original thought was to get the cells harvested and go as long as I can before doing the transplant. Not sure if that's the best thing to do. Of course the longer I wait, age could factor in also.
Castaway
Thanks for the reply. I am getting subQ injections. I hate to jinx myself but they are going pretty well so far. As I said in my post, it's nice having 10 days off between cycles (unlike Revlimid that I had 21 days on, with 7 off).
After being on Revlimid and having to stop due to a severe rash, I am a little nervous about something going wrong with the Velcade. Although my oncologist says that most people tolerate subQ Velcade really well, some elderly ladies getting Velcade that he treats have been on it for nearly two years. The only small thing that I have found is that I feel a little sluggish the day after the injection but it's not a big deal at all.
My original thought was to get the cells harvested and go as long as I can before doing the transplant. Not sure if that's the best thing to do. Of course the longer I wait, age could factor in also.
Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
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