Forgive the length of this – I have learning so much from all of you for the past year since my husband was diagnosed. He is now 90 days out from his autologous stem cell transplant (ASCT) and, right now, his numbers don’t look to have changed from pre-transplant. But his numbers were never really bad so, while I’m feeling disappointed and a bit frustrated, I know for now we are also blessed. Still I wonder if others have experienced the same thing.
Background
Journey began during routine yearly checkup when doc noticed protein in his urine and scheduled additional tests (thankful for such a thorough physician!). This led to meeting with an oncologist, more tests, and a diagnosis of IgG kappa multiple myeloma. Second opinion at Dana Farber and, when we got PET scan back which confirmed two lesions, my husband started Revlimid, Velcade, and dexamethasone (RVD). Husband is being treated at Yale with Dana-Farber conferring on treatment.
At time of diagnosis, my husband’s WBC was about 2.6, but he had a very strong immune system and was never really sick. The doctor at Dana-Farber thought this might be “normal” for him and, since his hemoglobin and other numbers were in range, he wasn’t concerned this represented anemia. Husband at 67 is really strong and healthy (except for this damn myeloma!).
Original test results at Dana-Farber
M-spike – 1.38 g/dL (13.8 g/L)
Kappa free light chains: 18.9 mg/l
Lambda free light chains: 1.15 mg/l
K/L Ratio: 12.60
IgG: 1639 mg/dl
IgA: 14
IgM: <25
WBC: 2.7
HCT: 38.6
HgB: 13.3
Bone marrow biopsy (BMB): 30-40% plasma cell percentage - no high-risk factors.
Treatment
With RVD treatment, M-spike came down to 0.5 g/dL and stuck there. BMB didn’t really move down much, which surprised doctors. Decision was made to switch to CyBorD (cyclophosphamide, Velcade, and dex) for a few cycles to see if M-spike would move. It did slightly remaining stable between 0.3 and 0.4, and BMB result was 10%. K/L ratio 0.87. IgG hovered around 680-720, but IgA and IgM both remained very very low. Next decision was made to do stem cell transplant at Dana-Farber / Brigham & Women’s.
Stem Cell Transplant
Date for stem cell infusion was April 13 and husband did remarkably well. Never lost his appetite, ate 3 meals a day, rode the exercise bike and walked, and just one episode of vomiting. Not even severe diarrhea. Truly until his numbers bottomed out, we wondered if he really got the 2 doses of chemo! We were so encouraged and optimistic.
Post Stem Cell Transplant
The day after he was released, he walked 3 miles. When we left Boston for Connecticut, his WBC had come down slightly to 3.93 (Dana-Farber), but he was feeling really good. Following weeks at Yale, his WBC went from 4.3 to 3.5 to 3 over the next few tests. It's now 2.7 (at Dana-Farber). Platelets went from 146 to 130 to 126 (now 129 at Dana-Farber).
Free Light Chains:
Kappa < 0.20 at Yale on July 2
Kappa 6.9 mg/l, lambda 1.1, kappa/lambda ratio 6.27 at Dana-Farber on July 16.
IgG hasn’t been measured at Yale since coming home. On July 16 at Dana-Farber: 692 and IgA is 10 and IgM is <25
We don’t have M-spike numbers from Dana-Farber yet, but last ones at Yale were 0.3 on May 14 and then 0.4 on June 22 and July 2.
The doctor at Dana-Farber feels we should not be discouraged or unhappy with results to date and wants husband to start maintenance of 10 mg Revlimid and believes we may still see a drop in M-spike once that happens. We meet with our doctor at Yale on July 29 and will start maintenance after that meeting and blood tests.
Only drugs husband is on now are acyclovir and Bactrim (trimethoprim and sulfamethoxazole) and also a pill called entecavir (Baraclude) which he started right before transplant because he had hepatitis 40 years ago and doctor want him to take it as a prophylactic for another few months.
I know I should be grateful this was caught early and he hasn’t experienced hard challenges yet. Most days I do feel that way. Since his numbers weren't bad at diagnosis, it's sometimes harder to see progress. But since the others are still suppressed and his WBC is low, I do find myself feeling blue at times.
Have others experienced anything similar after ASCT? Is it too soon to worry?
Forums
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Nanjeanne - Name: Nanjeanne
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 66
Re: Numbers aren't changing 90 days post SCT
Nanjeanne-
Worry becomes our new middle name, and sometimes our new first name, when dealing with myeloma and test results. I had my ASCT in January 2010 and went into it with a 0.5 g/dL M-spike. After my transplant, my M-spike was still 0.5 for about 6 months. It had dropped to zero when I got my results in my bloodwork done in July 2010. It had remained at 0.5 since the transplant until July.
My oncologist wanted to start me on maintenance with Revlimid 10 mg at 100 days post transplant and, although I wasn't sold on the idea, I went along with the recommendation. I felt that it was really too soon to put more chemicals into my body. Well, I was right. I had a bad reaction after starting the Revlimid, and my oncologist and I agreed to not do maintenance. Gradually after my M-spike dropped to zero, all of my other numbers began to improve. I didn't have a repeat BMB after my initial one at diagnosis.
Take a deep breath and give your husband time to recover from the transplant. He is still quite early in the recovery even though he physically has been able to do a lot all along. All of the chemicals that have been induced into his body take time to do their work and for his body to get rid of.
All the best to your husband and to you,
Nancy in Phila
Worry becomes our new middle name, and sometimes our new first name, when dealing with myeloma and test results. I had my ASCT in January 2010 and went into it with a 0.5 g/dL M-spike. After my transplant, my M-spike was still 0.5 for about 6 months. It had dropped to zero when I got my results in my bloodwork done in July 2010. It had remained at 0.5 since the transplant until July.
My oncologist wanted to start me on maintenance with Revlimid 10 mg at 100 days post transplant and, although I wasn't sold on the idea, I went along with the recommendation. I felt that it was really too soon to put more chemicals into my body. Well, I was right. I had a bad reaction after starting the Revlimid, and my oncologist and I agreed to not do maintenance. Gradually after my M-spike dropped to zero, all of my other numbers began to improve. I didn't have a repeat BMB after my initial one at diagnosis.
Take a deep breath and give your husband time to recover from the transplant. He is still quite early in the recovery even though he physically has been able to do a lot all along. All of the chemicals that have been induced into his body take time to do their work and for his body to get rid of.
All the best to your husband and to you,
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Numbers aren't changing 90 days post SCT
Thanks Nancy for your reply. Since my husband is feeling so well, we are just not going to dwell on the numbers and instead concentrate on planning a birthday celebration in Rome at the end of November!
Just curious, did your kappa lambda or immunoglobulin numbers also take time to get into the normal range? As I mentioned, we are grateful that his numbers aren't above normal, but it seems like the suppressed numbers are still suppressed, and we had hoped to see improvement in them by 90+ days post transplant. Maybe he is just a slow learner!
Just curious, did your kappa lambda or immunoglobulin numbers also take time to get into the normal range? As I mentioned, we are grateful that his numbers aren't above normal, but it seems like the suppressed numbers are still suppressed, and we had hoped to see improvement in them by 90+ days post transplant. Maybe he is just a slow learner!
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Nanjeanne - Name: Nanjeanne
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 66
Re: Numbers aren't changing 90 days post SCT
Hello Nanjeanne,
Thanks for sharing your husband's story. I'm sorry he hasn't responded as well to treatment as you (and his doctors) had hoped, but I agree with Nancy that it's probably too early to draw any conclusions about the impact of his stem cell transplant.
I think you'll find a lot of useful advice and experiences shared in this thread started by Melpen after her recent stem cell transplant. She started it less than 20 days after her transplant, but things did not look good for her at the time. It may be particularly interesting to you and your husband, by the way, because she also did her transplant under the care of doctors at Dana-Farber. Here's a link to the thread:
"Autologous stem cell transplant failure?" (started Jan 25, 2015)
Also, this link will take you to all transplant-related discussions here in the forum. I suspect you'll find many with experiences that may be helpful for you and your husband to read, as well.
This is one of the links in a forum posting you definitely should look at some time, if you haven't already, which is this one:
"Useful links to existing forum discussions" (posted Aug 3, 2014; regularly updated)
It has links to discussions on many different treatments, types of treatment (like transplantation), and side effects.
Best of luck to you and your husband!
Thanks for sharing your husband's story. I'm sorry he hasn't responded as well to treatment as you (and his doctors) had hoped, but I agree with Nancy that it's probably too early to draw any conclusions about the impact of his stem cell transplant.
I think you'll find a lot of useful advice and experiences shared in this thread started by Melpen after her recent stem cell transplant. She started it less than 20 days after her transplant, but things did not look good for her at the time. It may be particularly interesting to you and your husband, by the way, because she also did her transplant under the care of doctors at Dana-Farber. Here's a link to the thread:
"Autologous stem cell transplant failure?" (started Jan 25, 2015)
Also, this link will take you to all transplant-related discussions here in the forum. I suspect you'll find many with experiences that may be helpful for you and your husband to read, as well.
This is one of the links in a forum posting you definitely should look at some time, if you haven't already, which is this one:
"Useful links to existing forum discussions" (posted Aug 3, 2014; regularly updated)
It has links to discussions on many different treatments, types of treatment (like transplantation), and side effects.
Best of luck to you and your husband!
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JimNY
Re: Numbers aren't changing 90 days post SCT
Hi Nanjeanne,
Please do not be worried about a low level M-spike present after ASCT. If your husband does not have high risk genetic factors, he has a favourable prognosis anyway. Complete response is only required for people with high risk factors.
Also, I know many cases (me included) where ASCT did not drop M-spike at all and it stayed at low levels for years and years, and this can happen even without maintenance. In fact, in the best case scenario, the last remaining M-spike can disappear gradually over time and, if this happens, your husband will have the best prognosis of all.
About the suppressed other class immunogloblulins, mine took about two years to return to normal levels.
Good luck!
Please do not be worried about a low level M-spike present after ASCT. If your husband does not have high risk genetic factors, he has a favourable prognosis anyway. Complete response is only required for people with high risk factors.
Also, I know many cases (me included) where ASCT did not drop M-spike at all and it stayed at low levels for years and years, and this can happen even without maintenance. In fact, in the best case scenario, the last remaining M-spike can disappear gradually over time and, if this happens, your husband will have the best prognosis of all.
About the suppressed other class immunogloblulins, mine took about two years to return to normal levels.
Good luck!
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finn
Re: Numbers aren't changing 90 days post SCT
Good morning Nanjeanne,
I've been thinking about your posting since I read it yesterday, and the most recent comment by Finn has sparked me to share some of my thoughts on your husband's situation.
When I first read your posting, it reminded me of this article here at the Beacon that came out several years ago,
"Researchers Develop Model To Identify Myeloma Patients With MGUS-Like Disease," The Myeloma Beacon, July 8, 2013
It's about a study that was done by Spanish researchers that showed that there are a group of myeloma patients who seem to have what they described as "MGUS-like" disease. These patients, even if they do not achieve a complete response to their initial treatment, often go on to have long remissions and long overall survival.
Researchers at the University of Arkansas found that they also could identify a similar group of patients using the gene expression profiling test that they developed. See
F Zhan et al, "Gene-expression signature of benign monoclonal gammopathy evident in multiple myeloma is linked to good prognosis," Blood, Feb. 15, 2007 (link to full-text of article)
Since your husband is being seen at both Dana-Farber and Yale, I suspect that his doctors are aware of these studies and have considered whether he might fit the profile of the patients discussed in the studies. Still, it might be worth asking them if perhaps your husband falls into this category of patients. There might be tests that could be done, using bone marrow samples from your husband prior to treatment, that might show whether or not he falls into the group of patients discussed in the Spanish and Arkansas studies.
Another article that you might find helpful is this one by Dr. Rajkumar of the Mayo Clinic, It's title should make it clear why it's relevant to your husband's situation:
SV Rajkumar, "Should Myeloma Patients Panic If They Do Not Achieve A Complete Response?," The Myeloma Beacon, Aug 10, 2013
I hope this helps some. Let us know if you have any additional questions we can answer.
I've been thinking about your posting since I read it yesterday, and the most recent comment by Finn has sparked me to share some of my thoughts on your husband's situation.
When I first read your posting, it reminded me of this article here at the Beacon that came out several years ago,
"Researchers Develop Model To Identify Myeloma Patients With MGUS-Like Disease," The Myeloma Beacon, July 8, 2013
It's about a study that was done by Spanish researchers that showed that there are a group of myeloma patients who seem to have what they described as "MGUS-like" disease. These patients, even if they do not achieve a complete response to their initial treatment, often go on to have long remissions and long overall survival.
Researchers at the University of Arkansas found that they also could identify a similar group of patients using the gene expression profiling test that they developed. See
F Zhan et al, "Gene-expression signature of benign monoclonal gammopathy evident in multiple myeloma is linked to good prognosis," Blood, Feb. 15, 2007 (link to full-text of article)
Since your husband is being seen at both Dana-Farber and Yale, I suspect that his doctors are aware of these studies and have considered whether he might fit the profile of the patients discussed in the studies. Still, it might be worth asking them if perhaps your husband falls into this category of patients. There might be tests that could be done, using bone marrow samples from your husband prior to treatment, that might show whether or not he falls into the group of patients discussed in the Spanish and Arkansas studies.
Another article that you might find helpful is this one by Dr. Rajkumar of the Mayo Clinic, It's title should make it clear why it's relevant to your husband's situation:
SV Rajkumar, "Should Myeloma Patients Panic If They Do Not Achieve A Complete Response?," The Myeloma Beacon, Aug 10, 2013
I hope this helps some. Let us know if you have any additional questions we can answer.
Re: Numbers aren't changing 90 days post SCT
As always, members have been so helpful and generous with their thoughts - thank you.
JimNY - those links have been my lifeline. I learned so much reading them and gave me so much helpful information, especially prior to my husband's stem cell transplant. Thanks for posting them again. They are invaluable.
Finn - I will take your comment to heart and remain hopeful that MrNan will continue feeling as well as he does right now for a long long time!
TerryH - thanks for those really fascinating links. I hadn't seen them before but they were extremely interesting to read. I don't know if MrNan falls into that category but I will certainly talk to our doctors about the research done in Spain and at Univ of Arkansas. We see his doctor at Dana Farber in October and I made note to mention it. And reading Dr. Rajkumar's article reminds me to take a deep breath and be very grateful for what we do have!
JimNY - those links have been my lifeline. I learned so much reading them and gave me so much helpful information, especially prior to my husband's stem cell transplant. Thanks for posting them again. They are invaluable.
Finn - I will take your comment to heart and remain hopeful that MrNan will continue feeling as well as he does right now for a long long time!
TerryH - thanks for those really fascinating links. I hadn't seen them before but they were extremely interesting to read. I don't know if MrNan falls into that category but I will certainly talk to our doctors about the research done in Spain and at Univ of Arkansas. We see his doctor at Dana Farber in October and I made note to mention it. And reading Dr. Rajkumar's article reminds me to take a deep breath and be very grateful for what we do have!
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Nanjeanne - Name: Nanjeanne
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 66
Re: Numbers aren't changing 90 days post SCT
Nanjeanne-
Yes, my other immunoglobulins took time to come into the normal range. My first year post transplant I developed several respiratory infections that were quite severe and took weeks to resolve. But, I also was working in health care as a PT treating people with cancer. Many of them were going through their treatments at the time and were also immune compromised. So, I picked up everything that came along even though I was meticulous about keeping my work space and my hands very clean.
After that first year I really haven't been sick at all. I occasionally begin to develop some type of respiratory infection, but within 3 days it goes away. My feeling is that my immune system is functioning quite well, but it takes a little bit for it to rally its forces to fight off respiratory stuff.
You've been given a lot of good references to read. At this point in my own disease process, I think that maintaining a steady state is positive. I have an m-spike of 0.6 g/dl that has been steady now for 2 1/2 years with no sign of paraparesis. My kappa/lamda ratio is high, but it has been steady at the level it's at. All of my other numbers are within the normal range. So, I know that I have myeloma and I am being treated for it, but it is having minimal impact on my life.
Nancy in Phila
Yes, my other immunoglobulins took time to come into the normal range. My first year post transplant I developed several respiratory infections that were quite severe and took weeks to resolve. But, I also was working in health care as a PT treating people with cancer. Many of them were going through their treatments at the time and were also immune compromised. So, I picked up everything that came along even though I was meticulous about keeping my work space and my hands very clean.
After that first year I really haven't been sick at all. I occasionally begin to develop some type of respiratory infection, but within 3 days it goes away. My feeling is that my immune system is functioning quite well, but it takes a little bit for it to rally its forces to fight off respiratory stuff.
You've been given a lot of good references to read. At this point in my own disease process, I think that maintaining a steady state is positive. I have an m-spike of 0.6 g/dl that has been steady now for 2 1/2 years with no sign of paraparesis. My kappa/lamda ratio is high, but it has been steady at the level it's at. All of my other numbers are within the normal range. So, I know that I have myeloma and I am being treated for it, but it is having minimal impact on my life.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Numbers aren't changing 90 days post SCT
Hi Nanjeanne,
You've gotten some good information and some good links from other folks on this thread.
I'm sorry to be coming into the discussion a little late; I've been away from the Beacon for a few days.
I'd like to add my 2 cents because I was in the same situation as your husband and my friend Nancy after my ASCT. My m-spike was 0.4 g/dL both right before the ASCT and +90 days. Like you and your husband, I was pretty disappointed in that, especially because I had some complications during the ASCT that resulted in 3 days in the ICU and a month in the hospital.
Because I was/am in a clinical trial, I had 2 RVD cycles of consolidation therapy beginning at +90 days and then have been on Rev maintenance since then (21 months now). I tolerated both the consolidation treatment and the maintenance treatment pretty well. (Lucky in that respect, compared to Nancy.)
After 6 months or so of maintenance, my m-spike dropped to 0. At 11 months, I was sCR and MRD negative.
The maintenance phase of the trial ends for me in Oct. My myeloma specialist has already recommended that I continue Rev maintenance indefinitely after that. That's a big decision that I'm still pondering. Just as your husband has a big decision facing him.
I think whether/how much maintenance therapy is one of the biggest open questions in myeloma treatment these days (along with whether/when to do an ASCT). The links other folks have provided will give you and your husband some good information to consider as you make your decision.
Best wishes and please keep us posted on what you all decide and how things go.
Mike
You've gotten some good information and some good links from other folks on this thread.
I'm sorry to be coming into the discussion a little late; I've been away from the Beacon for a few days.
I'd like to add my 2 cents because I was in the same situation as your husband and my friend Nancy after my ASCT. My m-spike was 0.4 g/dL both right before the ASCT and +90 days. Like you and your husband, I was pretty disappointed in that, especially because I had some complications during the ASCT that resulted in 3 days in the ICU and a month in the hospital.
Because I was/am in a clinical trial, I had 2 RVD cycles of consolidation therapy beginning at +90 days and then have been on Rev maintenance since then (21 months now). I tolerated both the consolidation treatment and the maintenance treatment pretty well. (Lucky in that respect, compared to Nancy.)
After 6 months or so of maintenance, my m-spike dropped to 0. At 11 months, I was sCR and MRD negative.
The maintenance phase of the trial ends for me in Oct. My myeloma specialist has already recommended that I continue Rev maintenance indefinitely after that. That's a big decision that I'm still pondering. Just as your husband has a big decision facing him.
I think whether/how much maintenance therapy is one of the biggest open questions in myeloma treatment these days (along with whether/when to do an ASCT). The links other folks have provided will give you and your husband some good information to consider as you make your decision.
Best wishes and please keep us posted on what you all decide and how things go.
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: Numbers aren't changing 90 days post SCT
Thanks, Mike, for your perspective. It's really helpful.
Right now, Dr. Anderson at Dana-Farber doesn't think my husband needs consolidation. He is recommending 10 mg Revlimid and see how things go with that. We meet his Yale doctor on July 29 for blood work and then will start the maintenance therapy shortly thereafter. We go back to Dana-Farber in mid-October.
When we asked Dr. Anderson about length of maintenance, he said for now leave it open-ended but that can change any time as studies are always being done. The plan, we think, obviously depending on how he handles the maintenance, is to see what his numbers are and evaluate down the road. Hopefully, he will do as well as you have.
In the meantime, we will focus on the here and now ... and plan his birthday celebration in Rome at the end November/early December!
Thank you all for your comments - it has definitely helped me remain positive and grateful.
Right now, Dr. Anderson at Dana-Farber doesn't think my husband needs consolidation. He is recommending 10 mg Revlimid and see how things go with that. We meet his Yale doctor on July 29 for blood work and then will start the maintenance therapy shortly thereafter. We go back to Dana-Farber in mid-October.
When we asked Dr. Anderson about length of maintenance, he said for now leave it open-ended but that can change any time as studies are always being done. The plan, we think, obviously depending on how he handles the maintenance, is to see what his numbers are and evaluate down the road. Hopefully, he will do as well as you have.
In the meantime, we will focus on the here and now ... and plan his birthday celebration in Rome at the end November/early December!
Thank you all for your comments - it has definitely helped me remain positive and grateful.
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Nanjeanne - Name: Nanjeanne
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 66
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