My father, 68 years old and in perfect health until a Stage 3 diagnosis on July 1, 2016, was scheduled to begin his stem cell transplant this week, but everything has changed. On Monday, October 31, he went to have his scheduled vein check before starting Thursday on Zarxio (filgrastim-sndz). During his lab review the stem cell doctor said his red blood cell and platelet counts were too low and that he wanted my father to go back home (a 3.5 hour drive) to meet with his oncologist.
Pleased to find both doctors have spoken with each other, he was in bright and early Tuesday. His oncologist treating his multiple myeloma didn't agree or disagree with the other doctor, but did run numerous tests, including another bone marrow biopsy, which he had just had done 2 weeks ago. He also had ultrasounds of his chest and abdomen to look at fluid levels. She put him on a prescription of allopurinol and sent him home to rest.
He is exhausted and has been extremely tired and it has only worsened since he stopped his cycles of Velcade, dexamethasone, and Revlimid. I don't know what to think. We are so scared. I have been searching the forum to find a similar situation, but I have not had luck. Does this sort of thing happen often? Do people frequently have their transplants delayed? Does my father have some sort of infection?
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Mar dog - Who do you know with myeloma?: Father
- When were you/they diagnosed?: 7/1/2016
- Age at diagnosis: 68
Re: Stem cell transplant delayed / canceled
Hi Mar Dog,
I'm so sorry that your dad is having a rough time. But you really do want them to know what is going on before he has his stem cell transplant. When EJ had his transplant, the doctor told us that most complications arise from hidden infections or problems inside the body, rather than things that were contracted after your immune system is knocked out.
Do you mind if I ask what your dad did for his induction therapy? You say that he was diagnosed July 1, 2016 - it seems awfully fast to be heading to a stem cell transplant now. I thought it was fairly standard to do 4 - 6 rounds of your induction therapy, then take a month hiatus prior to a stem cell transplant.
Good luck!
Lyn
I'm so sorry that your dad is having a rough time. But you really do want them to know what is going on before he has his stem cell transplant. When EJ had his transplant, the doctor told us that most complications arise from hidden infections or problems inside the body, rather than things that were contracted after your immune system is knocked out.
Do you mind if I ask what your dad did for his induction therapy? You say that he was diagnosed July 1, 2016 - it seems awfully fast to be heading to a stem cell transplant now. I thought it was fairly standard to do 4 - 6 rounds of your induction therapy, then take a month hiatus prior to a stem cell transplant.
Good luck!
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Stem cell transplant delayed / canceled
Hi Mar Dog,
Did the oncologist not explain why she put your dad on allopurinol and what the next steps are?
The VRd regimen induces cancer cell apoptosis (cellular death) and that increased cellular turnover can in turn raise one's uric acid levels (which in turn can lead to gout and/or reduced kidney function if left unchecked). Allopurinol lowers one's uric acid level. Revlimid itself can also directly lower red blood cell and platelet counts. I'm just guessing these are the reasons why your dad is on allopurinol and off of VRd, but you should really check with the oncologist.
I'm also guessing that the onc will want to re-test your dad in the near future to see if the allopurinol treatment and cessation of the VRd has restored your dad's blood counts to a level where he could proceed with the transplant. You come across all kinds of reasons on this forum as to why folks need to postpone their transplants, including poor blood counts. Your dad's low red blood cell count (anemia) could also account for his fatigue. Hopefully, his condition will improve soon.
Again, this is all just conjecture on my part and you should really confirm everything with the oncologist.
Did the oncologist not explain why she put your dad on allopurinol and what the next steps are?
The VRd regimen induces cancer cell apoptosis (cellular death) and that increased cellular turnover can in turn raise one's uric acid levels (which in turn can lead to gout and/or reduced kidney function if left unchecked). Allopurinol lowers one's uric acid level. Revlimid itself can also directly lower red blood cell and platelet counts. I'm just guessing these are the reasons why your dad is on allopurinol and off of VRd, but you should really check with the oncologist.
I'm also guessing that the onc will want to re-test your dad in the near future to see if the allopurinol treatment and cessation of the VRd has restored your dad's blood counts to a level where he could proceed with the transplant. You come across all kinds of reasons on this forum as to why folks need to postpone their transplants, including poor blood counts. Your dad's low red blood cell count (anemia) could also account for his fatigue. Hopefully, his condition will improve soon.
Again, this is all just conjecture on my part and you should really confirm everything with the oncologist.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Stem cell transplant delayed / canceled
Thank you for your support and response. The part of the delay that my dad initially did not share is the doctor he met with handling the stem cell transplant said he is concerned that my dad may have plasma cell leukemia. This was a great shock and scare and what sent him back for the further blood tests and bone marrow biopsy. I have now read about this too and am terrified! I guess the doctor called my dad to apologize for his bedside manner and said something along the lines of, I may not be correct that the pathologist isn't seeing the same thing as I am. What does this mean? Any ideas?
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Mar dog - Who do you know with myeloma?: Father
- When were you/they diagnosed?: 7/1/2016
- Age at diagnosis: 68
Re: Stem cell transplant delayed / canceled
I'm not sure who is disagreeing with whom based on your above post. Are you saying that the local oncologist (who I thought was a woman) does not agree with what the pathologist sees when examining your dad's blood sample? Or are you saying the transplant doctor disagrees with the pathologist?
The hallmark trait of PCL is a large number of clonal plasma cells circulating around in one's blood (normally, there are only an extremely small number of plasma cells present in one's blood; they tend to hang out in the bone marrow). Otherwise, PCL is like multiple myeloma in many ways. I'm not a doc, but I would think that two doctors ought to be able to reach a consensus on how many plasma cells are present in a blood sample. The test to then verify whether those plasma cells are monoclonal or not is pretty straightforward.
In any case, I hope that things turn out well for your dad with his upcoming tests.
The hallmark trait of PCL is a large number of clonal plasma cells circulating around in one's blood (normally, there are only an extremely small number of plasma cells present in one's blood; they tend to hang out in the bone marrow). Otherwise, PCL is like multiple myeloma in many ways. I'm not a doc, but I would think that two doctors ought to be able to reach a consensus on how many plasma cells are present in a blood sample. The test to then verify whether those plasma cells are monoclonal or not is pretty straightforward.
In any case, I hope that things turn out well for your dad with his upcoming tests.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Stem cell transplant delayed / canceled
It seems that there is a big question mark on what is the correct diagnosis for your Dad. Plasma cell leukaemia is not multiple myeloma. They are different diseases, although they do share the feature of having clonal expansions of the plasma cells. There is an easy to read article in Wikipedia on the general nature of plasma cell leukemia.
I think it is really unfortunate that this uncertainty has suddenly occurred. From the above mentioned Wikipedia article, plasma cell leukaemia can be secondary to multiple myeloma. Perhaps this is the case with your father. But that is just speculation on my part. The important thing is to get the results of the analysis of second bone marrow biopsy. If I were you, I’d get a second opinion as well. I’d be feeling unnerved if this were to happen to me.
I wish your Dad good luck. That’s heartfelt.
Joe
I think it is really unfortunate that this uncertainty has suddenly occurred. From the above mentioned Wikipedia article, plasma cell leukaemia can be secondary to multiple myeloma. Perhaps this is the case with your father. But that is just speculation on my part. The important thing is to get the results of the analysis of second bone marrow biopsy. If I were you, I’d get a second opinion as well. I’d be feeling unnerved if this were to happen to me.
I wish your Dad good luck. That’s heartfelt.
Joe
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Wobbles - Name: Joe
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: June 2016
- Age at diagnosis: 67
Re: Stem cell transplant delayed / canceled
Ok, results back show they are 99% certain it isn't plasma cell leukemia, but unfortunately his myeloma is back and he has to try new treatments before being considered for a stem cell transplant. They are worried at how fast it came back. Is there still hope?
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Mar dog - Who do you know with myeloma?: Father
- When were you/they diagnosed?: 7/1/2016
- Age at diagnosis: 68
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