Low risk MDS and the drug called Lenalidomide

[purigading]

I was diagnosed with low risk myelodysplastic syndrome (Male aged 69) as a result of a bone marrow biopsy. No treatment has been suggested at this stage, pending a further blood test review in 3 months time. In the meantime I am trying to assess what others may have encountered with treatment with low risk MDS. I did read that a drug called Lenalidomide was sometimes used in these early detections. Is this still the case? any other information about treatment for low risk MDS would be much appreciated. To those who reply many thanks in advance.

[DanL]

I am sorry about the diagnosis, but am glad to hear that you were identified as lower-risk. There are a lot of treatments for MDS at the various stages, but a lot of it depends on symptoms, progression, and details of the biopsy, such as chromosome changes, gene alterations, etc.

Treatment varies from do nothing (referred to as watch and wait), to supportive treatments like blood transfusions, epoietin alfa, neupogen, or thrombopoeitin, to MDS approved treatments like Revlimid, Vidaza, and Dacogen, all the way to full blown chemotherapy with the potential for stem-cell transplant.

The tendency is to treat symptoms first to improve quality of life, then treat the disease to try to slow the progression once needed, and with MDS, although there are similarities, every patient is unique, and treatment plans are personalized.

As for your question about Revlimid, it is most effective in low-risk MDS, especially people with the deletion of the 5q chromosome, although it can be effective in some patients with normal chromosomes.

[Ugo]

First, I must apologize for a tardy reply. The last 51/2 months I have been dealing with other cancers.

In 2002 on my annual physical at Johns Hopkins my blood counts were low. My concerns however were calmed when I had another CBC at my local hospital which showed all blood counts in the normal ranges, However, the technician that did the test was hungover and I believe mixed up my specimen with that of another patient. That was the last time my CBC result showed as normal.

I was diagnosed as low risk MDS following a BMB. Since that time I have been monitored regularly at one of the top ten Hospitals in U.S. and while my counts have fluctuated they have not reached the point of requiring treatment for the MDS,

Late in 2017 I went to another Urologist for a second opinion regarding my prostrate, He convinced me to have a biopsy and also have a CY scan along with other tests. The biopsy for the prostrate showed early stage cancer which is being monitored regulsrly.

The C/T scan showed a mass in my abdomen which after an endoscopy and then surgery (partial gastrectomy) a tumor was removed which was malignant. I was then referred to a Medical Oncologist who offered a treatment to possibly prevent recurrence of the GIST. I deferred and then conferred with my hemo who stated that had I started that treatment that they used for GIST would have skewed my blood counts.

I am 81 years old and have no idea how long I will be around. I have had a very good life and know that I will at some point pass. I am noy fearful of death as I have faith. In the meantime, however I intend to fight cancer wherever it may occur. Igo to the gym five times a week doing both cardio and resistance exercise. I practice spiritual exercise regularly and have a great support system. I wish you the greatest ossible recovery. Di not give up.

[Cheryl C]

Hi Purigading

It's scary when you're first diagnosed with MDS and I understand how you are feeling. I was 64 and in a job I loved. I'm now 71 and MDS is not the focus of my life any more because fortunately my condition since 2012 has been reasonably stable.

I still have Intragam for hypogammaglobulinaemia. It helps my immune system to cope with the compromised immunity caused by my low neutrophils and lymphocytes. Recently because I'm in Tasmania caring for my 11 year old grandson and it's mid winter, my haemotologist increased the dose of Intragam. It's given me a nice boost. In 2012 I decided I didn't want to have chemical treatment unless absolutely essential and so far that's been the best decision for me.

Keep posting - I hope you are blessed with many years of life to come.

[Meri T.]

Purigading,

Three months for another blood check is quite good, since your MDS is that low. Per your question for other MDSs, my MDS watch and wait was for 9 months, not so low like you, but it was very beneficial for setting some priorities straight. I toned down my work, I ate better, slept better and even had time to do stuff with the family and for myself that I would never think of before being diagnosed. And as for Ugo, there is also faith.

During the first 3 months of watch and wait, I was "normal", no treatment, then after that came vitamins K1, anabolic steroids for my WBC which was dropping, and the last part of watch and wait was platelet transfusions. Then finally the transplant.

You will get through this. It takes patience.
Meri.