[Nan]

Plasma cell leukemia treatment - how often to do tests?

by Nan on Mon Feb 10, 2014 2:36 am

Hi:

What the doctors initially thought was multiple myeloma turned out to be primary plasma cell leukemia. I know others have posted on this subject before, but I have a question on induction. My family member, who is the patient, started out last week with one treatment of Velcade, Cytoxan and dexamethasone and this week just got Velcade and dex while the doctor waited for the Revlimid to come in so he could begin with a Revlimid, Velcade and dexamethasone regimen.

When he got his first treatment, I asked when they would retest him to determine whether the dosage or selected treatments were having any impact, and he said after a week. At the time of his second treatment, however, when we asked this same question, the doctor said testing would not be done until after three weeks of the first treatment.

Does anyone have any experience with this? What is the plasma cell leukemia protocol when it comes to retesting during induction to determine the efficacy of the drug cocktail and dosage?

Plasma cell leukemia is such an aggressive form of myeloma, it would seem that retesting should be done more frequently than after three weeks, but I do not know. The doctor is not a myeloma specialist but is consulting with one.

Thanks,

Nan

[Wfmom]

Re: Plasma cell leukemia treatment - how often to do tests?

by Wfmom on Tue Nov 11, 2014 5:14 pm

Nan, just wondering how your pPCL patient is doing? What treatment was decided upon? Where is he being treated. There are so few pPCL cases (my husband is one) that I'm trying to learn as much as I can about the various protocols and outcomes. Thanks

[Mark11]

Re: Plasma cell leukemia treatment - how often to do tests?

by Mark11 on Tue Nov 11, 2014 7:08 pm

Hi Wfmom,

Here is a link to the IMWG Consensus statement with respect to primary plasma cell leukemia in case you have not read it. As you know, it is rare, so there really is no defined path. It seems that proteasome inhibitors form the basis of treatment for pPCL. Aggressive therapies like VTD-PACE and HyperCVAD are discussed.

I hope this helps.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4112539/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4112539/figure/F4/

Mark

[Nan]

Re: Plasma cell leukemia treatment - how often to do tests?

by Nan on Sun Nov 30, 2014 9:52 pm

Dear Wfmom:

I am sorry to report that my family member died in October. He chose to get local treatment from an oncologist who was not a primary plasma cell leukemia specialist or even a multiple myeloma specialist. He wanted to stay home and not travel to a specialist, so we had to support him in his decision, although it was both sad and a little frustrating.

His blood tests were not done very frequently and he did not really have gene assays to determine the level of mutations with his cancer. His doctor, however, contacted a specialist at our request and he was prescribed oral medications of Revlimid, dex. and Velcade, which appeared to keep the cancer from spreading for several months until July. He even got his strength back and was feeling quite healthy.

But then he came down with a bad case of shingles in July and had to go off the meds. Apparently, shingles can be a side effect of the Velcade, but his doctor had never advised him to get a shingles vaccination. By the time he was well enough to get back on his medications, it no longer worked.

They then tried pomalidomide [Pomalyst, Imnovid], which had no effect. We did our best to manage his pain and he died at home with his loved ones at his side.

I am sorry to share this news. I would recommend seeing a specialist in PPCL and starting treatment as soon as possible. If it were me, I would either go to Arkansas or Dr. Hari in WI. And if you go on Velcade, I would ask your doctor about the shingles vaccination. I wish you the best of luck.

Nan