[Wobbles]

Re: Double whammy - multiple myeloma & hairy cell leukemia

by Wobbles on Sat Jul 09, 2016 6:27 pm

Thanks, David. I will ask my hematologist about omitting the cyclophosphamide.

I had a skeletal scan done yesterday. It consisted of 11 x-ray photos being taken; it only took 15 minutes. Breeze. I was hoping to take a peek at the photos, but the technicians said that was against the hospital’s policy.

Yesterday was also my day of receiving my usual tri-weekly red blood cell transfusion. Since my hemoglobin level had sunk to 72 g/L (7.2 g/dL), I was given 3 units. With the x-rays, lab work, transfusion and another dose of pamidronate, I was at hospital nearly 12 hours.

I also got the result of Thursday’s blood tests. As I indicated in my previous posting, I have been worried about my overall immune system and how its weakness may impact on any chemotherapy I might receive. Now I know where I stand regarding the numbers.

The results showed that my Ig levels are now

IgG = 2.1 g/L,
IgA = 43.8 g/L and
IgM = 0.1 g/L.

My neutrophils and monocytes are also very low.

I also found out that my albumin levels are dropping and that my M proteins stand at 40 g/L (4 g/dL). My M protein level now seems to have a doubling time of roughly 9 months. This increased rate of production started about 1 year ago.

I see my hematologist next Wednesday and will get her input on whether I would need any IVIG transfusions before chemotherapy. Also, she should have bone scan results by then.

I am leaning more and more towards starting chemotherapy right away.

As many of you have pointed out, it is the way to go.

Thanks

[Mark11]

Re: Double whammy - multiple myeloma & hairy cell leukemia

by Mark11 on Sat Jul 09, 2016 8:21 pm

Hi DavidG,

You wrote:

You might ask about omitting the cyclo­phos­phamide from the treatment. There is very little clinical trial evidence that cyclophosphamide, Velcade, and dexamethasone is much more effective than Velcade + dexamethasone. And of the three drugs, the cyclophosphamide probably has the most side effects.

Do you have a link to a peer-reviewed paper to back up any of that statement?

Thanks,
Mark

[TerryH]

Re: Double whammy - multiple myeloma & hairy cell leukemia

by TerryH on Tue Jul 12, 2016 9:26 am

I'm with Mark11 on this one. There is almost no question that adding cyclophosphamide to Velcade and dexamethasone will deepen responses to treatment. This is generally considered to be a good thing, since deeper responses generally translate into longer times to relapse.

Now, you can argue whether it's best to use cyclophosphamide upfront versus sometime later in a patient's treatment. Either option may lead to the same total overall survival. But the drug does have an anti-myeloma effect, and never using it at all to treat a myeloma patient would likely reduce the patient's overall survival.

Remember, in one of the Kyprolis trials involving relapsed myeloma patients, cyclophosphamide combined with either dex or prednisone performed just as well as single-agent Kyprolis:

https://myelomabeacon.org/news/2014/08/17/kyprolis-focus-trial-top-line-results/

[Wobbles]

Re: Double whammy - multiple myeloma & hairy cell leukemia

by Wobbles on Wed Jul 13, 2016 7:29 pm

I saw my hematologist today and told her that I want to proceed with her recommendations to start cyclophosphamide, Velcade, and dexamethasone treatments. My treatments will consist of 9 cycles with each cycle being 5 weeks long. There will be weekly chemo for 4 weeks and then 1 week off (for good behavior?). The whole treatment should last 45 weeks, maybe shorter if things go very well.

We also talked about a stem cell transplant. She said that is possible. I also asked if I had a stem cell transplant if that would also get rid of my hairy cell leukemia. She will look into that.

I also got the results back from my skeletal scan taken last Friday. I have no bone lesions that are associated with myeloma. Even though I do not meet the CRAB criteria, my hematologist thinks I should proceed with treatment. My bone marrow is already heavily damaged from a B-cell lympho­pro­liferative disorder.

Since my treatment will start next week, I do not have to wait too long. In the meantime I will organize myself to get necessary medicines and supplies.

Thanks for all your helpful comments.