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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: Pomalyst, cyclophosphamide & dexamethasone treatment

by Victor L on Wed Oct 23, 2019 1:43 pm

A satisfactory conclusion after three years of treatment with Pomalyst.

On 23 October, 2019 I had a discussion with my hematologist in France, the main purpose of which was for him to explain that the Pomalyst was no longer producing the results he desired. In particular, my 'free light chains' were starting to increase. Thus, he felt that an alternative treatment regimen should be started without delay.

My new treatment will be comprised of Darzalex (daratumumab), Velcade, and dexa­meth­a­sone. Initially, the treatment will be quite intensive, requiring 'full days' in the hematology unit, returning home in the evenings. Much will depend upon the blood test results of course, but we hope that after a few weeks it will be possible to carry out most of the treatments at home.

My conclusions following the near 40 months of treatment with Pomalyst, cyclo­phos­phamide and dex? I certainly am grateful for this substantial period of near-normal life. The cyclo­phos­phamide was not easy for me to tolerate, but it was only used during the early stages of the treatment; 'six little white tablets' evey day. The dexamethasone will be continued with my new Darzalex treat­ment. The Pomalyst was reasonably well tolerated, but I noticed that towards the end of the 21 day treatment cycles the side effects became quite strong and ideally I would have preferred to remain at home, certainly during days 18 to 23 of the cycle. I note that even after the Pomalyst had been stopped it would take two or three days for the side effects to reduce.

I hope to keep my Myeloma Beacon friends updated with my experiences with the new treat­ments;

Kind Regards from Victor L.

Victor L
Name: Victor L
Who do you know with myeloma?: Me
When were you/they diagnosed?: 2012
Age at diagnosis: 58

Re: Pomalyst, cyclophosphamide & dexamethasone treatment

by Arizonan on Thu Oct 24, 2019 11:31 am

Thanks for the update. Good luck.

David

Arizonan
Name: Arizonan
Who do you know with myeloma?: Self
When were you/they diagnosed?: April 2010
Age at diagnosis: 54

Re: Pomalyst, cyclophosphamide & dexamethasone treatment

by Nancy Shamanna on Fri Oct 25, 2019 8:02 am

Thanks for the update, Victor. I hope that the new treatment protocol goes really well. In my experience, the Darzalex seems easier to tolerate than some of the other drugs I have taken for myeloma. I am not experiencing too many side effects, and those may be more from the Revlimid plus dex, than the Darzalex. However, I can tell that there are more drugs in my system than before, and am more tired. It's interesting that you might be able to get your treatments at home. Bonne chance!

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

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