Patient Seeking Help

[Ashley Moncrief]

Hello,

I am posting this for a patient. If you are able to help, please email me at amoncrief@mds-foundation.org and I can put you in contact with him. You can also reply to this post and I will get it to him.

Thanks!

Ashley

Hi fellow MDS patients sharing my particular MDS condition and treatment options,

I, currently 80 years old, was diagnosed with low risk MDS in 2017. Since then my blood counts have continually decreased. Currently my absolute neutrophil count, the biggest concern of my hematologists/oncologists, has been in the 50 area (20 – 80 over the last year), and my White Blood Cell count, for the last year, has been the 1.6 -1.7 area. Two of the three excellent doctors have recommended initiation of serious treatment options [chemotherapy (e.g., Vidaza) or weekly infusion of GCSF (e.g., neupogen)] and one has recommended only continued, but frequent, observation until my neutrophil numbers consistently remain at or below 50 (which I’m at or near).

Otherwise I’m in very good health, have a good quality of life, and, in one doctor’s words, have a remarkable lack of external symptoms, total lack of transfusion dependence, and no current complications from my neutropenia. My blast count remains low, about 1%, and my bone marrow biopsies/aspirations have not flagged significant issues. My very recent evaluation included being in the MDS Low Risk category using the IPSS-M metrics. I’m a member of a seniors hiking group and typically hike weekly for about 7 miles on each hike, sometimes with substantial elevation gains. I have no other medical issues. I have no current treatments, although I have been taking prophylactic levels of anti-microbial pills of Bactrim, Diflucan, and Acyclovir.

I’m having to make soon a very difficult and life-altering decision regarding which of these three approaches I should select. There’s concern on one hand that, in the absence of treatment, if I do get an infection, I would likely have to go to the ER with potentially very threatening medical conditions. On the opposite extreme, treatments such as chemotherapy have only about a 50-50 chance of providing improvements, but with possible significant side effects and only a modest extension of my life. Also I’d be giving up my current good quality of life while not clearly gaining future periods of similar good quality of life before, for example, development of AML. All the doctors seem to agree that the filigrastim (neupogen) injection approach is not a long term solution and imposes other constraints on my quality of life.

I seek advice and insight from other MDS patients, who have or had this particular version of MDS condition and who had to address these same tradeoffs. How did you select among these options, what was your experience once having implemented your selected approach, and what would you recommend to me to include and use in my decision process? I would really appreciate your sharing of your thoughts with me to help me make the best decision for me.

Thank you so much for your consideration and assistance,
Bob Singer

[RoseAnn Norton]

I was on a weekly Neupogen and procrit injection for about a year and a half. My anemia and low blood counts improved to the point where I no longer need the injections. I did not have any quality of life changes while on the meds except for having to go in weekly for labs. I may be unique in how well I responded but you could choose to start and see how it goes and hopefully you too will respond well and be able to stop taking the meds. Good luck to you!

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