[smahesh]

Relapse 8 months after transplant

by smahesh on Fri Sep 26, 2014 8:52 am

HI,

My mother, now 68, was diagnosed with Stage III multiple myeloma last July. After the initial therapy of bortezomib (Velcade) + thalidomide + dexamethasone, she developed catatonia, and the thalidomide had to be stopped.

After reaching plateau by November 2013, she underwent an ASCT (autologous stem cell transplant) in January 2014.

She achieved Complete Remission and doctors were very happy with her response. The same continued till July 2014 with maintenance therapy of lenalidomide.

In August, she complained of pain in the hip and left femur bone. Now, after MRI and another bone marrow biopsy, it seems the multiple myeloma has returned. There is a faint M-band appearing in the blood test too.

Docs are now recommending radiation therapy to relieve her of pain (she cannot walk without support) and perhaps start with lenalidomide + dexamethasone.

I wanted to know:

1. Is it usual for relapse to occur so soon specially when she was showing very good response to ASCT?
2. As radiation therapy would damage "good" cells in the affected bone(s), how would the same be rebuilt? Would she need to take bisphosphonates?
3. What options are available to her once she, hopefully, shows positive reaction to lenalidomide + dexamethasone combo? Can she go for another ASCT?

Any comments would be most helpful.

[blair77]

Re: Relapse 8 months after transplant

by blair77 on Fri Sep 26, 2014 1:16 pm

Hi,

Relapse less then a year after ASCT is not "common". I believe they say that the average remission post ASCT should be around 18 months. I am hopeful that, with new medicines, they will be able to get your mother's disease back under control. Perhaps a low level of disease will return, but still remain stable.

[Dr. Ken Shain]

Re: Relapse 8 months after transplant

by Dr. Ken Shain on Sat Sep 27, 2014 9:05 am

I am sorry to hear that your mother has relapsed so soon after high-dose melphalan (HDM) - ASCT. It does happen and is a reflection of high risk disease. I am sure that she is undergoing a full restaging in addition to the lesion noted in her hip.

I agree with radiotherapy to that area. Radiation will affect both the bad and good cells in that area. Under most circumstances, we can get disease back under control and for a good amount of time.

There will be a number of options for your mother. This will depend on where you are in the world. Simple changes could involve adding dex to Revlimid and increasing the Revlimid dosing, Consider adding Velcade or Cytoxan (cyclophosphamide) to Revlimid / dex. I am not sure if you will have access to drugs like pomalidomide (Pomalyst) or carfilzomib (Kyprolis) but, if so, those also would be options to consider.

Further, if available, clinical trials are very critical means to give patients additional options for therapy as well as to identify the next generation of anti-myeloma therapies.

Again, sorry to hear of the bad news. Please keep your head up - there are options.

[smahesh]

Re: Relapse 8 months after transplant

by smahesh on Wed Oct 01, 2014 7:05 am

Many thanks for the advice, Dr. Shain.

On the myeloma side, her oncologist has suggested dex+Revlimid. That has started already. As she was on Revlimid maintenance, I am going to ask him to add Velcade to the combination.

She was also given a dose of Zometa.

On the situation with the bone, things got worse. During the process of radiation therapy, while getting up from the imaging table, she broke her femural neck. We got her partial hip replacement done (hemiarthroplasty) on 30 Sept, 2014. Once this stabilizes, then perhaps Velcade could be added to Revlimid (10 mg) she is taking now (I felt she responded to Velcade well in the initial therapy).

Another complication which came around July 2013, and again now, is unique. I have not read anything on that in the forums. She has become unresponsive to instructions, remains in a daze, and sometimes cannot swallow (even though she is trying). While not definite, this was diagnosed as "catatonia" and she is on medications of lorazepam [Ativan] (benzodiazepine category for anxiety relief). Not sure, but I have a feeling that this could be related to myeloma itself (as M-band and other statistics improved, she did not have this for over a year), or due to dex (she was started on dex last week 4 doses of 20mg each).

As she is in India (and I live in Singapore), the latest drugs such as pomalidomide (Pomalyst) or carfilzomib (Kyprolis) are not yet available. We will see how the response is with change in combination.

Again, thanks a ton.

[smahesh]

Re: Relapse 8 months after transplant

by smahesh on Thu Oct 02, 2014 2:52 am

Something unusual happened.

Post partial hip replacement operation, her haemoglobin has dropped dramatically, from 11.3 pre operation, to 3.4 in 2 days. There is no internal bleeding, or excessive blood loss during operation.

Whilst 4 packs of blood is being planned to be transfused, what worries me is the CAUSE. What could cause a sudden drop in haemoglobin levels to this extent?

1. Could it be due to Myeloma - does not seem to me a sudden drop in warranted.
2. Could it be due to Kidney issues?
3. Could it be due to operation having disturbed the bones and the production of haemoglobin has been impaired?

Any suggestion would help.
Shyam

[smahesh]

Re: Relapse 8 months after transplant

by smahesh on Mon Oct 06, 2014 11:52 am

Hello Everybody.

Finally, with 7 units of packed blood, the haemoglobin rose to 8.0 today. However, it would be tomorrow when the real impact would be felt (no blood transfusion today).

Separately, the bone marrow biopsy confirmed that my mother's multiple myeloma is plasmablastic myeloma, with very aggressive behaviour. With 67% of the cells infected in bone marrow, the prognosis does not seem very promising.

The oncologist has recommended VAD treatment in 10 days time, once the surgery wounds are healed. Only after 4 doses will we know if that is working to control the myeloma. In the interim, it is just to ensure haemoglobin is maintained and she can slowly start walking.