[Mark Pouley]

Is this my new reality? (Kyprolis, Pomalyst, and dex)

by Mark Pouley on Wed Mar 16, 2016 3:30 pm

I'm 2 rounds into my current treatment with Kyprolis, Pomalyst and dex. So far, the results are promising, as the M-spike is dropping and my other blood levels (especially white cells and neutrophils) remain very good. In the year since my diagnosis, these numbers have remained acceptable, and I've successfully avoided any illnesses. I also have tolerated all the treatments very well without any significant side effects. Perhaps this gave me a false sense of security. I think I was being careful about avoiding bugs, but perhaps not well enough.

Friday my blood draw put my white count and neutrophils in normal range. Sunday I developed a cold. The cold moved to my chest and a ugly sounding cough. By Tuesday, I was running a very low fever and my doctors prescribed antibiotics. So far I've missed three days of work and slept a great deal of that time. The antibiotics are working and I feel much better today. But now that my head is a bit clearer, I couldn't help but ask, Is this my new reality? Feeling everything is going well and have a cold knock me on my a--?

[Mark11]

Re: Is this my new reality? (Kyprolis, Pomalyst, and dex)

by Mark11 on Thu Mar 17, 2016 10:58 am

Hi Mark,

Sorry to hear about the chest cold. That has been going around this year. I know a few people that needed to go for antibiotics and they do not have a major health problem like myeloma.

Myeloma is characterized by immune dysfunction and the classes of drugs you are currently using (proteasome inhibitors, IMIDs and corticosteroid) have all been linked to an increased infection risk. Here is a paper I have posted in the past.

"The introduction of stem cell transplantation and the novel anti-myeloma agents, bortezomib, thalidomide, and lenalidomide, have improved the outcome of patients with multiple myeloma. These advances have transformed myeloma into a chronic condition, with multiple relapses and salvage therapies, all of which result in cumulative immunosuppression and higher risk of infection. "

Reference:

M Nucci and E Anaissie, "Infections in Patients with Multiple Myeloma in the Era of High-Dose Therapy and Novel Agents," Clinical Infectious Disease, 2009 (full text of article)

Also:

"In this large population-based study including over 9,000 multiple myeloma patients and 35,000 matched controls, we found that bacterial and viral infections represent a major threat to myeloma patients. We found the risk of specific infections like pneumonia, and septicemia to be over ten times higher in patients than in controls during the first year after multiple myeloma diagnosis. Importantly, the risk of infections increased in more recent years. The effect on infectious complications due to novel drugs in the treatment of multiple myeloma needs to be established and trials on prophylactic measures are required."

Reference:

C Blimark et al, "Multiple Myeloma and Infections: A Population-Based Study Based On 9,610 Multiple Myeloma Patients," ASH 2012 annual meeting abstract 653 (abstract)

Related Beacon news article:

"Risk Of Infection Among Multiple Myeloma Patients Is High And Rising (ASH 2012)," The Myeloma Beacon, Jan 11, 2013

Unfortunately this is something you will likely be dealing with as time goes on.

Mark

[Mark Pouley]

Re: Is this my new reality? (Kyprolis, Pomalyst, and dex)

by Mark Pouley on Thu Mar 17, 2016 12:02 pm

Thank you Mark. I guess I didn't realize the drugs increase my risk of picking up an infection independent from my white count or neutrophils. If anything, I guess it highlights for me the importance of being vigilant at all times and not get complacent just because some numbers appear to be good. This is a chronic condition (I plan on keeping it chronic) and I need to adjust how I take care of myself and how I respond to getting ill.

[Jonah]

Re: Is this my new reality? (Kyprolis, Pomalyst, and dex)

by Jonah on Thu Mar 17, 2016 2:06 pm

Thanks for that first reference, Mark11. I hadn't seen it before.

Mark nicely summarizes a key point of the first paper that is easy to miss. It's that the body's ability to fight infection isn't just about having the right level of white blood cell counts, or even the right level of immunoglobulins (IgG, IgA, etc.). There are many other factors that affect the body's ability to fight infection, and many of them are "worn down" in multiple myeloma patients. Some examples from the paper include:

• Numerical and functional abnormalities of dendritic cells and T cells
• Reduced kidney function
• Reduced / compromised lung function
• Damage to the GI system
• Diabetes / pre-diabetes (due to dexamethasone)
• Iron overload from repeated blood transfusions
• Additional organ damage due to amyloidosis or light chain deposition disease

I also wonder if treatment can compromise the bone marrow in a way that allows it to keep white blood cell counts at normal levels during normal circumstance, but the marrow can't increase white counts fast enough when an infection strikes.

In any case, I hope you continue to feel better, Mark, and that you're able to avoid further infections.

[Mark Pouley]

Re: Is this my new reality? (Kyprolis, Pomalyst, and dex)

by Mark Pouley on Thu Mar 17, 2016 6:27 pm

I think I let myself go to a dark place and feel sorry for myself a bit. I actually appreciate the comments and the articles provided. Like so much else with this disease, understanding why things happen as they do, and what to expect, can be helpful.

Being sick sucks, it would regardless of the myeloma, but understanding why I may be more susceptible and what I can do about is a lot more useful than just feeling sorry for myself.

[Mark11]

Re: Is this my new reality? (Kyprolis, Pomalyst, and dex)

by Mark11 on Sat Mar 19, 2016 6:56 pm

Hi Jonah,

You wrote:

I also wonder if treatment can compromise the bone marrow in a way that allows it to keep white blood cell counts at normal levels during normal circumstance, but the marrow can't increase white counts fast enough when an infection strikes.

This is not exactly what you wondered but it is in the same area of thought. I have posted this study in the past:

Abstract:

"Whether the efficacy of lenalidomide in the treatment of multiple myeloma is due to direct tumor toxicity only or to additional immunomodulatory effects is unclear. We studied the effect of lenalidomide treatment on T-cell immune reconstitution in patients with multiple myeloma who had undergone autologous peripheral blood stem cell transplant (ASCT). Twenty-nine newly diagnosed patients with multiple myeloma received induction therapy followed by high-dose melphalan and ASCT. After ASCT, 11 patients received lenalidomide consolidation therapy for 2 months followed by maintenance therapy until disease progression. The remaining 18 patients received no treatment. Serial analysis of thymic output, as given by numbers of T-cell receptor excision circles (sjTRECs), and T-cell phenotyping was performed until 18 months post-ASCT. Lenalidomide impaired long-term thymic T-cell reconstitution, decreased CD4 + and CD8 + CD45RA + CCR7 - effector-terminal T-cell absolute counts and increased CD4 + CD25 + CD127 - /low regulatory T-cells. Lenalidomide consolidation and long-term maintenance therapy, administered post-ASCT, may have a potentially negative impact on immune surveillance.

Reference:

E Clave et al, "Lenalidomide consolidation and maintenance therapy after autologous stem cell transplant for multiple myeloma induces persistent changes in T-cell homeostasis," Leukemia & Lymphoma, 2014 (abstract)

To give you an idea of what this means, CD4 cells are what the AIDS virus attacks and note that the patients on long term lenalidomide after auto have decreased amounts of these cells. Just an example of the cumulative immunosuppression discussed in the first paper I posted.

Mark

[allenbonslett]

Re: Is this my new reality? (Kyprolis, Pomalyst, and dex)

by allenbonslett on Tue Mar 22, 2016 2:33 pm

Not the drugs I am on, but I can say that the pattern for me after 12 and a half years of treatment is that I seem to get 'bugs' less often, but when they show themselves, they hit hard and usually more than a week, sometimes two.

[dranton]

Re: Is this my new reality? (Kyprolis, Pomalyst, and dex)

by dranton on Tue Mar 22, 2016 6:55 pm

Thank you, Mark11 for those references and information.

Mark, I have made changes to my work patterns to try and reduce my exposure, and my blood counts have never quite come back into normal range even a year after my ASCT, so do I tend to be cautious. I've become almost OCD-ish about washing my hands -- I do not shake hands anymore, only do fist-bumps which people seem to laugh at and accept. I still wear lighter masks when I am in gathering with lots of people, and I generally try to avoid lots of children.

My wife and I may catch something at the same time, but she recovers quickly, and I get much sicker, and it lasts much longer than hers. As Mark11's message seems to suggest, it is likely that this is our new reality; at least that has been my experience.

That said, I will still say -- do not let it totally take over your life. You need to live your life and enjoy each day. So, my recommendations are fist-bumps, masks when needed, go to see a movie at times when it is not very crowded! Walking outdoors and enjoying the beauty of the world around us is usually not a high risk activity unless it is very windy or something, so find time to create that peace and space that you need.