[Michael]

Just finished my second cycle of vidaza. So far the biggest issue for me has been constipation. Initially started with Senekot not very effective. My doctor suggested colace and miralax, which I’m using but started on day2 of treatment. Again dealing with stubborn constipation. I’m thinking maybe I need to be more aggressive and start combating the constipation a day or 2 prior to next vidaza cycle. Any thoughts or experiences are appreciated.

[Michael]

I just started Vidaza treatment after seven years of watch and wait. My COE physician recommended 3 days of Vidaza every 28 days. I’ve developed itchy skin and had a slight bout of constipation within 2 days of the 3rd injection. I’ve not experienced pain from the injections but did develop red spots at injection sights (arm and abdomen). So far I can definitely tell that I’m feeling more fatigue and find myself taking afternoon naps. It’s very early in treatment for me but that has been my limited experience. I should know by Xmas if the Vidaza is working for me.

[Michael]

Bill~

Sounds like Vidaza has worked for you 👏👏👏. Do you walk or ride when playing golf?

I’ve been seven years treatment free but it looks like Vidaza is on the near horizon. My red and hemoglobin #’s are modestly low but my wbc has long been abysmal and now my platelets are falling. My hematologist suggests Vidaza once my platelets plateau at 100.

I have 4 mutations, none of those are Tp53 (Axsl1, Idh1, SRSF2, and Jak2).

I play golf 3 times per week walking. Course is hilly but so far I’ve not had issue. My hematologist is recommending a shorter treatment schedule than normal, Vidazza three days per 28 day cycle. Do you play golf during your week of treatment? If not how long after treatment are you able to hit the links?

Regards

[Michael]

Bonnie

I appreciate your response and wish you well. It appears our disease, while labeled the same, is acting much differently. No surprise there as I have consistently been told everyone is different.

The MDs/mpn overlap is definitely very rare. My Center of Excellence physician has recommended that I begin low dose Vidaza, 3 days per month once my platelets go below 100.
I am meeting with my local hematologist on 6/6 to discuss all of this. I am sure she will coordinate with the Center of Excellence physician who has far more experience with treating the disease.

Best wishes

[Michael]

Jean~

That is awesome.

Best wishes.

[Michael]

Mary~

I was originally diagnosed in June 2016 at 64 yrs old. Initially was told intermediate risk with 6% blasts. Local hematologist insisted on starting treatment. I received a second opinion at a Center of Excellence and the result was 1% blasts and no need for treatment. I get an annual BMB at the center for excellence and disease has not progressed, still 1% blasts. I am still on watch and wait.

Best wishes.

[Michael]

Marie~

My first BMB in 2016, was done in a local hospital under sedation. It was totally painless.
I had a second BMB the following month in the doctor’s office at a Center of Excellence. I traveled 3 hrs for that appointment(second opinion). The BMB was performed by a physician assistant and was very painful (7 of 10). I thought the same as you regarding the medieval torture chamber. Shot of lidocaine and the provider did not use a drill.
I receive an annual BMB at the same Center of Excellence and the experience is the same procedure but is performed by the MD and has been mostly painless (lidocaine and small drill). I’ll call it a 2 on the 1 to 10 scale. I think hitting a nerve is something that makes the experience less pleasant but if an experienced provider performs the procedure it is very much tolerable. My provider has been doing them for close to 40 years.

I’m getting my 8th BMB on 12/7 and expect a relatively pain free experience. I am always able to drive the 3 hours back home after the procedure.

Best wishes.

[Michael]

I can’t speak specifically to Epogen but I occasionally get Neupogen injections at my hematologist’s office and they are always covered by Part B. I believe the advice you got regarding injections at the doctor’s office to be accurate.

Best wishes

[Michael]

I was on prednisone for 2 yrs, for relief from the effects of polymyalgia. I started at 15mg and the weening process was the most difficult thing I’ve ever had to manage. During that entire time there was no appreciable effect on my RBC or hemoglobin levels. During this period my RBC hovered around 4.2 and my hemoglobin hovered around 12.

In my 6+ years post MDS diagnosis my RBC and hemoglobin have been very stable. So far MDS has only effected my WBC and neutrophils, I am consistently classified as severely neutropenic.

Best wishes

[Michael]

Can’t help you on the comparison. I have been going to Columbia for six years. I don’t receive treatment there, as so far I’m treatment free. I do agree with you on the apparent disorganization. On more than one occasion, I waited hours past my scheduled appt. to see the doctor. I agree the health care staff is wonderful. I would not leave there as I think the world of my doctor. I suspect that when treatment becomes necessary I’ll get it locally(3 hrs north of NYC). I also recall that things were more efficient during the first 18 months of Covid.

Best wishes

[Michael]

If I recall correctly, your husband’s disease is similar to mine, basically manifesting as neutropenia. I often have abnormal rbc morphology, most times they are categorized as +1, meaning 25% of the cells are affected. I get CBC’s about every 60 days. My latest showed normal morphology.

At no time in the last six yrs has either of my hematologist/oncologist’s suggested a need for a BMB resulting from the abnormal rbc morphology. That may be because of the +1 designation. I do travel to NY Presbyterian for an annual BMB.

Best wishes.

[Michael]

Malissa~

Thanks much for sharing in your kind and thoughtful response. It reassures me in my decision process.

Best wishes to you and Leon.

[Michael]

Malissa~

I hope your husband is doing well. I don’t have an answer to your question but have a question for you.

How did the doctor and surgery center or hospital safeguard against infection during the hip replacement? I am 70 yrs old and have been on watch and wait for six years. My platelets are normal, my hemoglobin is 11.5 to 12.5, but my ANC is typically .4 to .9 at monthly blood draws.

My orthopedist wants to replace both knees but I’ve been reluctant based on my severe neutropenia. I have received two injections of Gel One in each knee, which has allowed me to have better quality of life including walking 18 holes of golf 3x per week. As long as those knee injections provide the relief I’m getting Ill put off replacement.

Thank you.

• This reply was modified 1 year, 9 months ago by Michael.

[Michael]

Very early in my diagnosis I was injecting neupogen three times per week at home. That was 6 yrs ago and lasted only a short time.

Best wishes.

[Michael]

I was diagnosed in June 2016 with intermediate MDS. Trilineage dysplasia with sole cytopenia being neutropenia. At outset I was getting regular Neupogen injections to raise wbc/anc as prescribed by my local hematologist. She wanted my wbc to increase in preparation for Vidazza.

I asked for and received a second opinion from a Center of Excellence. Diagnosis changed to low grade MDS again with trilineage dysplasia and sole cytopenia being neutropenia. All treatment was stopped. It’s been 6 years on watch and wait for me. On a few occasions I have received a Neupogen injection to help with dealing with skin infections. I had a recent skin infection and received a Zarxio injection. My ANC is regularly less than 500 meaning I’m severely neutropenic. I’ve not been febrile and have had only 1 cold in my six years post diagnosis. I do get antibiotics when skin inflections occur.

I have asked “ why not just continue Neupogen/ Zarxio injections”. The response has been that regular use of these treatments could promote AML.

So to answer your question the only way my neutrophils increase is with Neupogen/ Zarxio. It is only administered occasionally when I seek treatment for a skin infection. While my ANC is always low my Center of Excellence hematologist says the neutrophils are getting to my tissues, since I’ve not been “sick”, although they don’t show peripherally in my regular blood draws.

This has been long winded but I hope it’s helpful.

[Author]

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