My first treatment was Velcade but that didn't work so was changed to thalidomide, cyclophosphamide tablets and dexamethasone. I was also on prednisalone during the Velcade stage and gradually dosage was lowered for this.
I was recommended to stem cell transplant and had a big hit of IV cyclophosphamide and 9 days of needles in the lead up to harvest.
Since then I've had lots of muscle fatigue and the peripheral neuropathy seems much more pronounced - balls of my feet and my heels hurt. My walking has been severely limited because of this.
I'm only 2.5 weeks away from transplant and am now getting thumping headaches. My 17 yo pet passed away last week.
Grateful for any advice as to why I'm experiencing the muscle fatigue, and if it will improve. My platelets and haemoglobin are still down and my albumin has also dropped to 30. I'm getting really worried.
Regards
Ailsa
Forums
4 posts
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Ailsa - Name: Ailsa
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 53
Re: Problems after harvest of stem cells
Hello Alissa, do you mind if I ask you where you are from?
So far, your side effects sound that they may be in the range of what others have reported. It sounds, however, that it may be a bit more appropriate for you to be prescribed Revlimid. It may be that Revlimid is not available in your local. You might ask your doctor (hopefully myelomae specialist) on that point.
At induction, you are sick from the myeloma and also the drugs. Once the myeloma is knocked down, you should start to feel better.
So far, your side effects sound that they may be in the range of what others have reported. It sounds, however, that it may be a bit more appropriate for you to be prescribed Revlimid. It may be that Revlimid is not available in your local. You might ask your doctor (hopefully myelomae specialist) on that point.
At induction, you are sick from the myeloma and also the drugs. Once the myeloma is knocked down, you should start to feel better.
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JPC - Name: JPC
Re: Problems after harvest of stem cells
I'm from Australia.
Initially my haematologist said that for the government to let me have Revlimid I had to go on thalidomide for at least a month, however I stayed on that at as I had dramatic improvement.
I've completed six months treatments and am not on anything now as I'm waiting for stem cell transplant, but as mentioned, after the big chemo hit prior to stem cell harvest, I'm experiencing lots of muscle fatigue and pronounced peripheral neuropathy.
Paraproteins are down to a trace only, so I don't understand why I'm not feeling too good. Over the last week I'm experiencing thumping in the back if my head. I'm aware my platelets and hemoglobin are STILL recovering from that awful chemo hit, which was about two months ago.
Shouldn't I be feeling better now?
Initially my haematologist said that for the government to let me have Revlimid I had to go on thalidomide for at least a month, however I stayed on that at as I had dramatic improvement.
I've completed six months treatments and am not on anything now as I'm waiting for stem cell transplant, but as mentioned, after the big chemo hit prior to stem cell harvest, I'm experiencing lots of muscle fatigue and pronounced peripheral neuropathy.
Paraproteins are down to a trace only, so I don't understand why I'm not feeling too good. Over the last week I'm experiencing thumping in the back if my head. I'm aware my platelets and hemoglobin are STILL recovering from that awful chemo hit, which was about two months ago.
Shouldn't I be feeling better now?
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Ailsa - Name: Ailsa
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2014
- Age at diagnosis: 53
Re: Problems after harvest of stem cells
Good day, Alissa:
First, I am sorry for your serious side effects. After reading your second reply, I think I understand your question better, and I take back my first statement that this is probably entirely normal.
My experience with my wife a year ago was that she did not need the Cyclophosphamide mobilization, as the doctors (based on response) in our center felt that the multiple myeloma was suppressed adequately, she went straight to the Neupogen/Mozobil shots (you will also probably see those meds or their equivalent). So I do not have direct experience with your situation/condition.
In the treatments and side effects main topic of the forum, they have "express" links to past discussions on major topics, and the general transplant questions will definitely have info on your question. Here is the link:
https://myelomabeacon.org/forum/search.php?keywords=transplant+transplants+transplantation+sct+scts+asct+ascts+bmt+bmts&terms=any&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search
Cyclophosphamide mobilization is widely used, and in some centers, it appears to be a standard approach. Based on other posters that I have read in the past, some of them skate right through it, however, some people do have significant reactions. Based on your description, it does seem on the heavy side, if not excessive. So I would definitely not hesitate to inform your doctor. One thing I can think of on the good side is that I understand the Cyclophosphamide is just a one time shot, and hopefully, the bad side effects will subside. Good luck to you on your upcoming procedure. Regards, JPC
First, I am sorry for your serious side effects. After reading your second reply, I think I understand your question better, and I take back my first statement that this is probably entirely normal.
My experience with my wife a year ago was that she did not need the Cyclophosphamide mobilization, as the doctors (based on response) in our center felt that the multiple myeloma was suppressed adequately, she went straight to the Neupogen/Mozobil shots (you will also probably see those meds or their equivalent). So I do not have direct experience with your situation/condition.
In the treatments and side effects main topic of the forum, they have "express" links to past discussions on major topics, and the general transplant questions will definitely have info on your question. Here is the link:
https://myelomabeacon.org/forum/search.php?keywords=transplant+transplants+transplantation+sct+scts+asct+ascts+bmt+bmts&terms=any&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search
Cyclophosphamide mobilization is widely used, and in some centers, it appears to be a standard approach. Based on other posters that I have read in the past, some of them skate right through it, however, some people do have significant reactions. Based on your description, it does seem on the heavy side, if not excessive. So I would definitely not hesitate to inform your doctor. One thing I can think of on the good side is that I understand the Cyclophosphamide is just a one time shot, and hopefully, the bad side effects will subside. Good luck to you on your upcoming procedure. Regards, JPC
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JPC - Name: JPC
4 posts
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