Start treatment when no symptoms?

[Jean Ira]

My husband, 70, was diagnosed with MDS about a year ago. His numbers have been decreasing over the year, with platelets more recently decreasing more rapidly. Numbers now: WBC 1.9, RBC 3.98, HGB 11.3 and Platelets 29. He has had 2 BMB with blasts about 2%. He gets small sores on his legs which heal well – this seems to be his only symptom. His doctor said he should consider starting treatment. That would be 5 days a month with Azacitidine. It is difficult to think about starting this when he now lives a normal life in these times, when the treatment comes with side effects and decreased numbers. Has anyone begun treatment while feeling fine?

[Kathy Lynch]

MDS is SO frustrating! Has your husband been to see anyone at one of the MDS centers of excellence? When I was diagnosed 2 1/2 years ago my regular oncologist said I should start drug treatment…went to one of the centers, they said I should do the wait and watch. I started on Aranesp 8 months ago when my HGB stayed below below 10 for a couple of months… after 5 months my HGB went up to 12 and has been holding for the past 3 months….so back to wait and watch. With his WBC so low he is really subject to infection and with his RBC low he is probably is also tired… Since most oncologists don’t have much background in MDS…if at all possible I would get a referral to the center closest to you…mine was 100% OK with me getting a second opinion from one of the centers. Good luck!

[Amy S.]

Yes, the prior response is correct. Get a second opinion with a Centre of Excellence. I had low counts ( WBC=1.5, RBC=3.08 HCB=10.9 platelet=207) in the fall of 2019. I had no symptoms other than low blood counts and caught cold quite easily. Then the count went further down 2 months later and blasts up to 12%. He put me on azacitidine ( 5 days a month) and counts kept falling for a couple of months. Not until he added venetoclax to the mix and the counts started to improve to normal after 7 months of the treatment. All this time I had no symptoms. The only side effects for me were constipation ( fixed by laxatives), fatigue during the week of treatment. Currently my counts are all normal but the doctor said I have to continue treatment. Otherwise I will relapse. This is the issue that we discuss every time I see him. So far I am still in treatment. No other symptoms, have my covid-19 vaccine and carry on with my life as usual. If anyone has successfully stop treatment without relapse, please post here to let me know. Thanks in advance.
Hope you find this helpful.

[Michael]

Jean~

I’ll pile on with the recommendation for a second opinion from a center of excellence.

I was diagnosed in 6/2016. My local hematologist wanted to start Vidazza ASAP. My initial BMB indicated 6% blasts. I asked for a second opinion and within 2 weeks had an appointment at a center of excellence. Results. From that BMB showed 1% blasts. The plan for treatment was halted. I’ve been on watch and wait for nearly 5 years.

My monthly blood work yields results similar to your husband. Wbc 1.8, rbc 4.1, hgb 11.5. The difference is my platelets are not low. My blood counts are stable month to month. I do also get skin infections that I generally treat myself. I have not had any other symptoms.

I am lucky so far and am thankful that I’ve had no treatment. The second opinion was a Godsend.

Best wishes.

• This reply was modified 3 years, 1 month ago by Michael.

[Donna]

I treat at a Center of Excellence. I didn’t have any symptoms but my counts were dropping since 2013. I had BMB and dx. of MDS in 2018. I have 4 mutations and MD thought I should start treating when my platelets were at 10,000. I did 3 cycles of Dacogen, 5 days/week, once a month. My counts went very low, ANC down to 0, Hemoglobin went to 7…all low. I ran fevers and had sores in my mouth, not a great scenario. I had blood and platelets when necessary. I didn’t treat for about 6 months and very gradually my numbers came up a bit, except WBC and ANC. They stay low. Tried again in Jan. of 2020 and plan was every 3 months to see if my body could tolerate it better. Then COVID came and I have not treated again. He didn’t want to run my WBC down lower and lead to infection. I have been on watch and wait since then with monthly blood work. My platelets came up and my MD contributes it to the chemo. They hover around 118. RBD/Hemoglobin/hematocrit have all come up. Hemoglobin stays around 10 to 11. WBC is 1.2 and ANC is .5. So chemo helped my platelets and caused my RBDs to go down. Eventually I will treat again I guess, but for now, I am okay. I have never had any of those other meds that people talk about. I am thankful to have some energy back. I wish you well. Donna

[Jean Ira]

Kathy, aiqueen, Michael and Donna – It meant so much to my husband and I that you all would take your time to respond. You have been very helpful also in that you understand the frustration of this disease which affects individuals differently. The nearest Center of Excellence is 250 miles away. His hematologist/oncologist who he sees monthly, does have other MDS patients. He has an appointment tomorrow which will include labs taken today. I am unfamiliar with this site, so I hope you all received our appreciation.

[Michael]

Jean~

FWIW, I travel 165 miles to my Center of Excellence. I do this every six months, and rely on their guidance for treatment. I see my local hematologist monthly for blood work but treatments will be decided by the experts.

Best wishes.

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