Hi AC,
Congratulations on making it through another bone marrow biopsy.
For what it's worth, I had 2 cycles of Revlimid, Velcade, and dexamethasone (RVD) as consolidation therapy after my stem cell transplant in 2013. Then I went on Revlimid maintenance, which I'm still on. I got into stringent complete response (sCR) and minimal residual disease (MRD) negative, but it took about a year after my transplant for my M-spike to get down to 0. My free light chains still bounce around somewhat, so I think technically I am in CR, not sCR at this point.
I had a lot of itching after my transplant, which started around the same time as your rash did. Mine was just itching, no rash. An antihistamine and time helped. The itching has not come back since then.
My consolidation treatment began around Day +90. Where you are now seems a little soon after the stem cell transplant to be starting RVD again, but you have a somewhat different situation with the high kappa.
Would it make sense to see the results of your bone marrow biopsy before deciding about RVD vs. dex only? Or simply waiting a couple more weeks before beginning the RVD?
Best wishes to you. Keep us posted on what you decide and how things go.
Mike
Forums
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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: AC's stem cell transplant in South Florida
Thank you everyone for the replies. Waiting on the bone marrow biopsy results. I've decided to start the full course of action and was thinking like what Mikeb suggested that it might be ok to wait one more week to start instead of next week. I am just not feeling good and starting to enjoy my summer. This past weekend I was able to snorkel for 2 hours and I really want to go scuba diving (only to 30 feet or so) before I start back on the Revlimid, Velcade, and dexamethasone for 2 cycles.
I just received some numbers today and i was wondering if is natural to have these be low post-transplant? What is the true meaning of these being low post-transplant?
IgA 20 mg/dL (81 - 463 mg/dl)
igG 465 mg/dL (694 - 1618 mg/dI)
IgM 18 mg/dL (48 - 271 mg/dL)
"Just Keep Swimming"
AC
I just received some numbers today and i was wondering if is natural to have these be low post-transplant? What is the true meaning of these being low post-transplant?
IgA 20 mg/dL (81 - 463 mg/dl)
igG 465 mg/dL (694 - 1618 mg/dI)
IgM 18 mg/dL (48 - 271 mg/dL)
"Just Keep Swimming"
AC
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: AC's stem cell transplant in South Florida
Hello AC:
Just to generally answer your question under the thread. There is a fairly new concept of "treat to MRD negativity". So I think that is the idea of consolidation. Your evaluation seems to be (based on light chains) that you may not be there. If the elevated light chains were due to some other cause (the rash. allergies), and you were at MRD negative already, then it falls under "better safe than sorry" if you were to go forward with consolidation. If you were not at MRD negative, and you were feeling strong and felt you could tolerate 3 or 4 more rounds of consolidation, then I think that would be the scenario to go after the consolidation. The downside is that consolidation usually improves response, but not always, so it could be done and the result not achieved. Again, multiple myeloma is tricky, and different for everyone, so its definitely a judgement call.
Good luck.
Just to generally answer your question under the thread. There is a fairly new concept of "treat to MRD negativity". So I think that is the idea of consolidation. Your evaluation seems to be (based on light chains) that you may not be there. If the elevated light chains were due to some other cause (the rash. allergies), and you were at MRD negative already, then it falls under "better safe than sorry" if you were to go forward with consolidation. If you were not at MRD negative, and you were feeling strong and felt you could tolerate 3 or 4 more rounds of consolidation, then I think that would be the scenario to go after the consolidation. The downside is that consolidation usually improves response, but not always, so it could be done and the result not achieved. Again, multiple myeloma is tricky, and different for everyone, so its definitely a judgement call.
Good luck.
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JPC - Name: JPC
Re: AC's stem cell transplant in South Florida
To be fair, treating to MRD negativity is not really a new concept. Here are 2 papers from 2000 discussing this.
"Persistent PCR− bone marrow samples from multiple myeloma patients in long-term CR is reminiscent of data previously reported in other malignancies. In these instances, analysis of MRD by PCR was found to closely correlate with post transplantation clinical outcome and to provide important information for patient management. Whether this also holds true in multiple myeloma remains, as yet, unanswered. Larger molecular monitoring studies and, importantly, quantitative measures of residual tumor cells are required to further define the real value of PCR-based strategies. Results of these studies must also be compared with conventional methods of analysis to clarify the prognostic relevance of MRD detection in multiple myeloma. Recently, the existence of a graft-versus-myeloma effect was formally demonstrated by several groups, who reported favorable responses to donor lymphocyte infusion in patients who experienced a relapse after transplantation. This finding suggests that in multiple myeloma, as in other diseases, immunological mechanisms mediated by donor leukocytes may operate in vivo and, ultimately, concur to control and eventually eradicate the tumor clone."
http://www.bloodjournal.org/content/96/1/355.long
"In our series, 7/14 (50%) of the patients who achieved CR after allografting also obtained MCR. None of the patients who achieved MCR relapsed, even though two of them reverted to molecular positivity. Whether MCR does actually represent a goal of multiple myeloma therapy remains to be demonstrated. However, it seems likely that, as in other hematologic malignancies, in multiple myeloma too, MCR might be a first step in improving the clinical outcome. It is also remarkable that only one patient who achieved CR but not MCR relapsed. Although multiple myeloma is universally considered an incurable disease, allografting allowed at least 13 of our patients to achieve prolonged control of the disease, suggesting the possibility of an eventual cure. Our current results strongly suggest that the achievement of CR after allografting provides a relatively good prognosis, independently of specific molecular status."
http://www.haematologica.org/content/85/9/930.full.pdf+html
More advanced centers have been looking at MRD since the 1990's. Here is another from 2003.
"We believe that these data could prompt the design of prospective studies to evaluate if the treatment of molecular disease can offer a low-risk opportunity to extend the duration of remission and survival."
http://www.bloodjournal.org/content/102/5/1927.long
Here is a paper from 2007 discussing this as well.
"These results suggest that achieving molecular remission is required for long-term freedom from disease and curing myeloma. Preliminary results from our study group and other investigators showed that by using nested PCR or real-time PCR, molecular remission can be achieved after dose-reduced allograft, and quantitative measurement of residual myeloma cells can be used for further post-transplant strategies in order to achieve molecular remission (Zagrivnaja MV et al. Blood 2004; 102: Abstract 4420).
Targeting molecular remission also implies the recently discovered myeloma stem cells, a rare population of cells that maintain the ability to self-renew and sustain tumor. Anti-myeloma agents such as bortezomib or lenalidomide have little activity against myeloma stem cells in vitro, whereas rituximab kills myeloma stem cells in vitro. So far, only limited efficacy has been reported for rituximab in the treatment of multiple myeloma.
Overall, to cure patients with multiple myeloma, achievement of molecular remission seems to be a 'conditio sine qua non'."
http://www.nature.com/leu/journal/v21/n9/full/2404775a.html
Mark
"Persistent PCR− bone marrow samples from multiple myeloma patients in long-term CR is reminiscent of data previously reported in other malignancies. In these instances, analysis of MRD by PCR was found to closely correlate with post transplantation clinical outcome and to provide important information for patient management. Whether this also holds true in multiple myeloma remains, as yet, unanswered. Larger molecular monitoring studies and, importantly, quantitative measures of residual tumor cells are required to further define the real value of PCR-based strategies. Results of these studies must also be compared with conventional methods of analysis to clarify the prognostic relevance of MRD detection in multiple myeloma. Recently, the existence of a graft-versus-myeloma effect was formally demonstrated by several groups, who reported favorable responses to donor lymphocyte infusion in patients who experienced a relapse after transplantation. This finding suggests that in multiple myeloma, as in other diseases, immunological mechanisms mediated by donor leukocytes may operate in vivo and, ultimately, concur to control and eventually eradicate the tumor clone."
http://www.bloodjournal.org/content/96/1/355.long
"In our series, 7/14 (50%) of the patients who achieved CR after allografting also obtained MCR. None of the patients who achieved MCR relapsed, even though two of them reverted to molecular positivity. Whether MCR does actually represent a goal of multiple myeloma therapy remains to be demonstrated. However, it seems likely that, as in other hematologic malignancies, in multiple myeloma too, MCR might be a first step in improving the clinical outcome. It is also remarkable that only one patient who achieved CR but not MCR relapsed. Although multiple myeloma is universally considered an incurable disease, allografting allowed at least 13 of our patients to achieve prolonged control of the disease, suggesting the possibility of an eventual cure. Our current results strongly suggest that the achievement of CR after allografting provides a relatively good prognosis, independently of specific molecular status."
http://www.haematologica.org/content/85/9/930.full.pdf+html
More advanced centers have been looking at MRD since the 1990's. Here is another from 2003.
"We believe that these data could prompt the design of prospective studies to evaluate if the treatment of molecular disease can offer a low-risk opportunity to extend the duration of remission and survival."
http://www.bloodjournal.org/content/102/5/1927.long
Here is a paper from 2007 discussing this as well.
"These results suggest that achieving molecular remission is required for long-term freedom from disease and curing myeloma. Preliminary results from our study group and other investigators showed that by using nested PCR or real-time PCR, molecular remission can be achieved after dose-reduced allograft, and quantitative measurement of residual myeloma cells can be used for further post-transplant strategies in order to achieve molecular remission (Zagrivnaja MV et al. Blood 2004; 102: Abstract 4420).
Targeting molecular remission also implies the recently discovered myeloma stem cells, a rare population of cells that maintain the ability to self-renew and sustain tumor. Anti-myeloma agents such as bortezomib or lenalidomide have little activity against myeloma stem cells in vitro, whereas rituximab kills myeloma stem cells in vitro. So far, only limited efficacy has been reported for rituximab in the treatment of multiple myeloma.
Overall, to cure patients with multiple myeloma, achievement of molecular remission seems to be a 'conditio sine qua non'."
http://www.nature.com/leu/journal/v21/n9/full/2404775a.html
Mark
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Mark11
Re: AC's stem cell transplant in South Florida
AC,
Glad to hear that you are back into the "swim" of life.
I think the fact that you have hypogammaglobulinema (low immunoglobins) is pretty normal after transplant. That can persist for awhile. I could go back and look at what mine were at the same point after transplant, and I think they would be similar to yours.
As far as consolidation goes, I don't know how to advise you. 2 cycles doesn't sound like a lot, but I would still wait until Day 100. You may be pleasantly surprised that your light chains normalize. Whether you know it our not, your body is still reeling from the transplant.
I think you are doing fanstastic! I was pretty much wiped out by my transplant for a good 4 months. My appetite was terrible, and I had a lot of nausea. I was very weak and thin, even though my blood work was good. So the doctors were very pleased with me, but I felt like crap.
I'm anxious to see what your numbers will be at Day 100. I'm thinking you will be in CR!
Ellen
Glad to hear that you are back into the "swim" of life.
I think the fact that you have hypogammaglobulinema (low immunoglobins) is pretty normal after transplant. That can persist for awhile. I could go back and look at what mine were at the same point after transplant, and I think they would be similar to yours.
As far as consolidation goes, I don't know how to advise you. 2 cycles doesn't sound like a lot, but I would still wait until Day 100. You may be pleasantly surprised that your light chains normalize. Whether you know it our not, your body is still reeling from the transplant.
I think you are doing fanstastic! I was pretty much wiped out by my transplant for a good 4 months. My appetite was terrible, and I had a lot of nausea. I was very weak and thin, even though my blood work was good. So the doctors were very pleased with me, but I felt like crap.
I'm anxious to see what your numbers will be at Day 100. I'm thinking you will be in CR!
Ellen
Re: AC's stem cell transplant in South Florida
I will chime in quickly with one additional point. Not to try and overcomplicate my answer, I did think that there was a little bit of time to make the decision. However, as Ellen stated very well, I think most doctors (from my readings) do wait to at least Day 100 to decide if consolidation is needed, and you do not have to decide ahead of time the exact number of cycles – you can "play it by ear".
Thank you Ellen for stating my thoughts better than I did myself, and best of luck to you AC.
Thank you Ellen for stating my thoughts better than I did myself, and best of luck to you AC.
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JPC - Name: JPC
Re: AC's stem cell transplant in South Florida
Just to follow up on Ellen's point about hypogammaglobulinema being common after a stem cell transplant and sometimes persisting "for awhile," here are my immunoglobulin numbers from this month. And it's been over 3 years since my transplant! I've been on consolidation or maintenance treatment essentially full time since Day +90 after the transplant, so that, no doubt, is also affecting these numbers.
Immunoglobulin A 26 mg/dL [40-350 mg/dL] Low
Immunoglobulin G 549 mg/dL [650-1,600 mg/dL] Low
Immunoglobulin M 20 mg/dL [50-300 mg/dL] Low
And one other happy thing - even with these numbers, I have not had any infections for well over a year. And no serious infections (pneumonia, etc.) after recovering from the SCT. I'm still on acyclovir and pentamidine because of the compromised immune system. And I am religious about washing my hands before touching anything that might go near my mouth. Other than that, this is my (not so) new normal.
Mike
Immunoglobulin A 26 mg/dL [40-350 mg/dL] Low
Immunoglobulin G 549 mg/dL [650-1,600 mg/dL] Low
Immunoglobulin M 20 mg/dL [50-300 mg/dL] Low
And one other happy thing - even with these numbers, I have not had any infections for well over a year. And no serious infections (pneumonia, etc.) after recovering from the SCT. I'm still on acyclovir and pentamidine because of the compromised immune system. And I am religious about washing my hands before touching anything that might go near my mouth. Other than that, this is my (not so) new normal.
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: AC's stem cell transplant in South Florida
Everyone thank you so much for the information. I received my results back today from the bone marrow biopsy. I have a 25% plasma cell percentage and my doctor and my stem cell doctor are still discussing the right approach.
My myeloma doctor at Cleveland Clinic now suggests waiting another two weeks or so before starting on the consolidation therapy, so my body has more time to recover. The head of the stem cell group at Sylvester, University of Miami, still suggests I only take Revlimid 10 mg and not do the consolidation therapy because he said my levels can stabilize.
This week my rash came back too and all my itching. The rash and the itch came back two days after I started back on acyclovir alternative. Today I was told to stop the alternative acyclovir because of the rash and itch. I thought I had this rash / itch under control and then wham!, it's back. The doctor is worried that if I can't take any form of acyclovir or the alternative, then I will not have the protection.
I cannot tell everyone how much I appreciate your responses.
Time to Keep on Swimming!
AC
My myeloma doctor at Cleveland Clinic now suggests waiting another two weeks or so before starting on the consolidation therapy, so my body has more time to recover. The head of the stem cell group at Sylvester, University of Miami, still suggests I only take Revlimid 10 mg and not do the consolidation therapy because he said my levels can stabilize.
This week my rash came back too and all my itching. The rash and the itch came back two days after I started back on acyclovir alternative. Today I was told to stop the alternative acyclovir because of the rash and itch. I thought I had this rash / itch under control and then wham!, it's back. The doctor is worried that if I can't take any form of acyclovir or the alternative, then I will not have the protection.
I cannot tell everyone how much I appreciate your responses.
Time to Keep on Swimming! AC
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: AC's stem cell transplant in South Florida
AC, I am sorry to hear the rash is back. I am sending good thoughts that all will resolve and you numbers will stabilize and you will only need maintenance therapy.
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dogmom - Who do you know with myeloma?: husband
- When were you/they diagnosed?: December 2015
- Age at diagnosis: 58
Re: AC's stem cell transplant in South Florida
I wanted to let you know about a touching tribute from one of my clients. Hopefully other lives will be saved. The client is a car dealership and employees there had kept up to date and always sent me prayers and support during my stem cell transplant. On Friday I learned that the company had a bone marrow group from the University of Miami come to collect swabs because a number of the employees signed up to be a bone marrow donors in my honor.
I have been thinking these past two months that so far the stem cell transplant was just a waste, given my high kappa and high plasma already. I was thinking that it made no sense to go through what I did and the myeloma not even be touched by the melphalan.
However, with this touching tribute, I know now that my stem cell transplant had a purpose and even if it didn't help me (still keeping my fingers crossed), my condition and the act of kindness to volunteer to donate bone marrow / stem cell if they ever matched can save a number of lives in the future for the non-myeloma blood cancers that have to receive someone's else's stem cells.
I can now say that regardless of how much the stem cell helped me, my stem cell transplant had a purpose and I am very grateful to everyone that was willing to sign up and become a stem cell transplant donor for those who it could save their life.
AC
I have been thinking these past two months that so far the stem cell transplant was just a waste, given my high kappa and high plasma already. I was thinking that it made no sense to go through what I did and the myeloma not even be touched by the melphalan.
However, with this touching tribute, I know now that my stem cell transplant had a purpose and even if it didn't help me (still keeping my fingers crossed), my condition and the act of kindness to volunteer to donate bone marrow / stem cell if they ever matched can save a number of lives in the future for the non-myeloma blood cancers that have to receive someone's else's stem cells.
I can now say that regardless of how much the stem cell helped me, my stem cell transplant had a purpose and I am very grateful to everyone that was willing to sign up and become a stem cell transplant donor for those who it could save their life.
AC
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
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