Right now I am so lost, confused and frustrated over how my husband's treatment is going, and since I was not present when he got the results of his bone marrow biopsy report, I thought I would put this out to get some feedback.
Here is his report.
1) Plasma cell neoplasm/plasma cell myeloma with atypical plasma cells, accounting for ~50-60% of marrow nucleated cells.
2) No diagnostic evidence of amyloid deposition is observed.
3) Hypercellular marrow for age(~80-90%) with tri-lineage hematopoeisis and no increase in blasts.
4) Moderate to marked diffuse increase in reticulin fibers(grade 2-3 on a scale of 0-
5) Storage iron present.
The diagnosis of a plasma cell neoplasm/plasma cell myeloma is based on the morphologic finding in this evaluation in combination with the submitted clinical history of anemia and monoclonal gamopathy, and the findings of the concurrent flow cytometric immunophenotypic analysis of bone marrow aspirate. A concurrent flow cytometric immunophenotypic analysis of bone marrow aspirate reveals ~0.5% CD56- lambda monocolonal plasma cells. Plasma cells are usually underrepresented in the flow analysis. The moderate anemia observed in this patient can be partly explained by the presence of plasma cell neoplasm; however a clinical consideration should also be given to other possible secondary etiologies. Additionally no diagnostic evidence of an amyloid deposition is observed. Cytogenic and requested TargetGene analysis (FISH and SNP panel for multiple myeloma) are currently being performed in our laboratory and separate reports will follow. The immunostains performed in this evaluation were utilized to further study the marrow.
Clinical history reads as follows: 53 year old man with a given history of anemia, lambda light chains over 3000 with a new diagnosis of monoclonal gammopathy/plasma cell neoplasm.
Husband was started on Velcade, Revlimid, and dexamethasone (VRD) therapy 21 day cycle on August 4 with the intention of doing stem cell harvest after round 4 of treatment.
Velcade days 1,4,8,11
Revlimid days 1-14
Dex 20 mg on the days he received his Velcade injections and the day after
After first round of treatment his light chains dropped by more than half
End of second round there was a slight increase in his creatinine level which caused a slight bump up of his light chain numbers. Husband went for a 2 hour fluid infusion which brought both his creatinine and light chain numbers down. I must add between the second and third cycle my husband got pnuemonia but antibiotics took care of it. I must also add that he also started running low grade fevers intemittently which continue to this day.
Third round of treatment we thought were going ok. However when we saw the doctor she did not have the results of his blood work back yet.
Started his fourth round of treatment and had his Velcade on day 1 and 4. Get a call from the doctor saying his light chains are up again and she is changing his treatment.
He will now be on a 28 day cycle but instead of Velcade he will be on
Kyprolis days 1,2,8,9,15,16
Revlimid days 1-21
Dex 20 mg on the days he receives his Kyprolis.
He has just completed his first round and we see the doctor on Friday. I have my doubts, since he just seems to deteriorate before my eyes. He constantly sounds out of breath, runs fevers at the drop of a hat, he shuffles when he walks. He looks horrible.
Prior to the start of his treatment you never would have known there was anything wrong with him other than the anemia, which was found by accident through a company physical for his job.
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Melanie - Name: Melanie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 54
Re: Not sure husband getting right treatment
Melanie,
Were you ever able to convince your husband to make a trip to see a multiple myeloma specialist at Memorial Sloan Kettering? As most everyone on this forum will tell you, there is no substitute for working with a top multiple myeloma specialist, especially if he is struggling with a given treatment regimen.
Were you ever able to convince your husband to make a trip to see a multiple myeloma specialist at Memorial Sloan Kettering? As most everyone on this forum will tell you, there is no substitute for working with a top multiple myeloma specialist, especially if he is struggling with a given treatment regimen.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Not sure husband getting right treatment
No I have not been able to. He trusts his doctor and likes the convenience that our hospital is less than 5 minutes from our home. It is an excellent hospital and they do have a cancer center there that has a good rating. I still want to go to Sloan Kettering, but I cannot force him.
However, we just got word from our insurance company that our hospital is not on the list of transplant centers for it to be covered 100%, but Sloan Kettering is. So, at some point, we just may end up there. That is, in my opinion, if he lives that long. That is how concerned I am.
He was totally asymptomatic prior to starting treatment and now he is a mess.
Honestly, even though I am concerned about his treatment, I would really like someone to interpret his bone marrow biopsy report for me. My husband is so laid back in that he trusts his doctor and feels it does not matter what the report says because he will do whatever the doctors tell him.
However, we just got word from our insurance company that our hospital is not on the list of transplant centers for it to be covered 100%, but Sloan Kettering is. So, at some point, we just may end up there. That is, in my opinion, if he lives that long. That is how concerned I am.
He was totally asymptomatic prior to starting treatment and now he is a mess.
Honestly, even though I am concerned about his treatment, I would really like someone to interpret his bone marrow biopsy report for me. My husband is so laid back in that he trusts his doctor and feels it does not matter what the report says because he will do whatever the doctors tell him.
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Melanie - Name: Melanie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 54
Re: Not sure husband getting right treatment
Hi Melanie,
To help others respond, it might be helpful if you expanded a bit on these results.
To be clear, the BMB results you posted above are recent and were taken after a few cycles of VRd, right? Or did you just post the baseline test results that were taken prior to induction? If you've got two sets of BMB results, it would be helpful to include the details of both.
Also, what were the results of his cytogenetic and FISH tests from his first BMB? Were any genetic risks (i.e. deletions, translocations, etc) flagged from the first BMB?
What were his baseline M-spike and free light chain values before induction started and what are they currently?
It's not my business, but if the writing is on the wall that one needs to go to MSK for the transplant (and doing a transplant is his end goal), then I would think one would want to be under the care of the doctors at MSK as one went through the induction process. I would think his current doctor would also agree that would make sense....although I may be wrong on this point since I've never personally gone through a transplant. Does his current doctor know that your husband can't have the transplant at his facility?
To help others respond, it might be helpful if you expanded a bit on these results.
To be clear, the BMB results you posted above are recent and were taken after a few cycles of VRd, right? Or did you just post the baseline test results that were taken prior to induction? If you've got two sets of BMB results, it would be helpful to include the details of both.
Also, what were the results of his cytogenetic and FISH tests from his first BMB? Were any genetic risks (i.e. deletions, translocations, etc) flagged from the first BMB?
What were his baseline M-spike and free light chain values before induction started and what are they currently?
It's not my business, but if the writing is on the wall that one needs to go to MSK for the transplant (and doing a transplant is his end goal), then I would think one would want to be under the care of the doctors at MSK as one went through the induction process. I would think his current doctor would also agree that would make sense....although I may be wrong on this point since I've never personally gone through a transplant. Does his current doctor know that your husband can't have the transplant at his facility?
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Not sure husband getting right treatment
Melanie, I can't really speak to the specifics of the BMB, but hopefully someone else will. I did want to respond regarding his current appearance and condition.
First off, I hope you will be able to see the doctor with him on Friday. Our situations are different, but it is required, and expected, by my husband that I also speak up whenever he sees the doctor. Shuffling and shortness of breath are worrisome symptoms in a person who was otherwise healthy seeming prior to treatment. Personally, I would aggressively address those concerns at his appointment.
I also can't speak to the effects of his treatment, as I have no experience with some of his meds, but it does seem a pretty tough round he's going thru, which may explain his symptoms. But quite often patients expect that ,if they present themselves to their doctor, the doctor will magically determine all that is wrong with them. They can't – they need to see the man that you see day to day. Paint them a picture.
And yes, if your husband is not telling them everything that you see, I would speak up, regardless of any objections he might have. People often don't recognize their own decline. How is he eating and drinking? At many turns in the last 3 years, we have relied heavily on Ensure-type drinks. They have truly been life saving.
And lastly, pneumonia can be very hard to fully recover from. The course of antibiotics may be done, but the healing often takes longer than that, even in healthy people.
Hope this helps a bit.
First off, I hope you will be able to see the doctor with him on Friday. Our situations are different, but it is required, and expected, by my husband that I also speak up whenever he sees the doctor. Shuffling and shortness of breath are worrisome symptoms in a person who was otherwise healthy seeming prior to treatment. Personally, I would aggressively address those concerns at his appointment.
I also can't speak to the effects of his treatment, as I have no experience with some of his meds, but it does seem a pretty tough round he's going thru, which may explain his symptoms. But quite often patients expect that ,if they present themselves to their doctor, the doctor will magically determine all that is wrong with them. They can't – they need to see the man that you see day to day. Paint them a picture.
And yes, if your husband is not telling them everything that you see, I would speak up, regardless of any objections he might have. People often don't recognize their own decline. How is he eating and drinking? At many turns in the last 3 years, we have relied heavily on Ensure-type drinks. They have truly been life saving.
And lastly, pneumonia can be very hard to fully recover from. The course of antibiotics may be done, but the healing often takes longer than that, even in healthy people.
Hope this helps a bit.
Re: Not sure husband getting right treatment
Cindylouise,
I most certainly plan on going to the doctor with him on Friday. I usually do go to the doctor with him and to his treatments at the infusion center, and do voice my concerns and they put it all down to the rigors of the chemo. Well, I refuse to take that for an answer this week. I want something done!!
I cannot help but think there is something brewing underneath the surface. His appetite is horrendous and I did buy the Boost Plus, but he only drinks one of those a day because he does not care for them very much. Then again, he does not care for the taste of many foods these days because he says everything has a metallic taste to it. He does however drink a lot of water and juice, so at least he is getting his fluids.
Multibilly,
That BMB report was the one taken at diagnosis. I have seen no other reports in regard to his M-spike or genetic composition. I do not even know if he is IgA, IgG, or any of the others. His lambda light chains were in the 7000 range prior to starting treatment and they dropped to 3000 after his first treatment on the VRD.
However, like I said, his light chains started fluctuating during his second round of treatment and by the end of his third round they started going up again and that is why the doctor took him off the Velcade and put him on the Kyprolis.
I am hoping that when we see the doctor on Friday, she will say his light chains dropped again, but with the way he is looking and feeling, I am not very optimistic about that happening. I would love to believe that this is all a side effect of his treatments, but to look at him I do not think it is.
I most certainly plan on going to the doctor with him on Friday. I usually do go to the doctor with him and to his treatments at the infusion center, and do voice my concerns and they put it all down to the rigors of the chemo. Well, I refuse to take that for an answer this week. I want something done!!
I cannot help but think there is something brewing underneath the surface. His appetite is horrendous and I did buy the Boost Plus, but he only drinks one of those a day because he does not care for them very much. Then again, he does not care for the taste of many foods these days because he says everything has a metallic taste to it. He does however drink a lot of water and juice, so at least he is getting his fluids.
Multibilly,
That BMB report was the one taken at diagnosis. I have seen no other reports in regard to his M-spike or genetic composition. I do not even know if he is IgA, IgG, or any of the others. His lambda light chains were in the 7000 range prior to starting treatment and they dropped to 3000 after his first treatment on the VRD.
However, like I said, his light chains started fluctuating during his second round of treatment and by the end of his third round they started going up again and that is why the doctor took him off the Velcade and put him on the Kyprolis.
I am hoping that when we see the doctor on Friday, she will say his light chains dropped again, but with the way he is looking and feeling, I am not very optimistic about that happening. I would love to believe that this is all a side effect of his treatments, but to look at him I do not think it is.
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Melanie - Name: Melanie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 54
Re: Not sure husband getting right treatment
Melanie,
It's really easy to get sidetracked at these kinds of appointments, especially if there is some new development .... and to then forget half of the questions you wanted to ask, as well as half of the explanations. So,
It's really easy to get sidetracked at these kinds of appointments, especially if there is some new development .... and to then forget half of the questions you wanted to ask, as well as half of the explanations. So,
- I'd really suggest writing down all your questions beforehand.
- If you have a smartphone or other recording device, I would really suggest bringing it along to record the conversation. I still do that to this day.
- If you aren't already doing it already, ask for copies of all the lab results and the doctor's writeups regarding the appointments. These are really invaluable to have in hand later.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Not sure husband getting right treatment
Hi Melanie,
I can appreciate your worries about your husband, and I think you are getting really good advice from all the others posting in here. Would you also be seeing your family doctor for the symptoms of breathlessness and fatigue?
As well as the possibility of lingering symptoms of pneumonia, he may well be depressed over all of this sudden change in his life. Other doctors besides oncologists may become involved with his care too.
If I read your post correctly, he is on 40 mg of dex a week, which is the maximum dose I think. That alone can cause side effects that may change his outlook on life.
I hope that all of this is a temporary stage in the myeloma and that he starts to recover soon also.
I can appreciate your worries about your husband, and I think you are getting really good advice from all the others posting in here. Would you also be seeing your family doctor for the symptoms of breathlessness and fatigue?
As well as the possibility of lingering symptoms of pneumonia, he may well be depressed over all of this sudden change in his life. Other doctors besides oncologists may become involved with his care too.
If I read your post correctly, he is on 40 mg of dex a week, which is the maximum dose I think. That alone can cause side effects that may change his outlook on life.
I hope that all of this is a temporary stage in the myeloma and that he starts to recover soon also.
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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: Not sure husband getting right treatment
Update on husband's condition. Just as I suspected his disease is progressing despite the three cycles of VRD and 2 rounds of Kyprolis, Rev and dex. Just for clarification it is 2 rounds of not two cycles of the Kyprolis rev dex. So as of next Tuesday he will be admitted to the hospital for VDT-PACE. His doctor is hoping to get his lambda light chains down to do the stem cell harvest and if they do I believe they will go straight to transplant.
I finally found out that he has no m-spike, that he is light chain only. However his doctor did tell me that the lambda light chain is more aggressive and more difficult to treat. So my optimism is fading fast since he continues to progress despite treatment. The only optimistic thing I heard today that despite the increase in his light chains his creatinine levels are still good and she wants to make sure they stay that way, hence the reason for pulling out the big guns so to speak. I am honestly hoping this does the trick.
I still have had no luck with trying to get him to go to Sloan Kettering.
I finally found out that he has no m-spike, that he is light chain only. However his doctor did tell me that the lambda light chain is more aggressive and more difficult to treat. So my optimism is fading fast since he continues to progress despite treatment. The only optimistic thing I heard today that despite the increase in his light chains his creatinine levels are still good and she wants to make sure they stay that way, hence the reason for pulling out the big guns so to speak. I am honestly hoping this does the trick.
I still have had no luck with trying to get him to go to Sloan Kettering.
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Melanie - Name: Melanie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: July 2014
- Age at diagnosis: 54
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