[Bill Corbin]

While I do not have high-risk, I have low risk MDS and have been on Vidaza for 28 cycles and will start cycle 29 on March 4. It took 4 to 5 cycles for my CBC to become normal. My platelets have been in the normal range ever since. My RBC and WBC count fluctuate from the lower end of normal to just below normal each cycle of CBC’s. ANC has remained at the lower end of normal for most of the past 24 cycles. My side effects from Vidaza have mainly been discomfort and redness at the injection sites, fatigue, some queasiness controlled by Sofran, and constipation controlled by Miralax.

[Bill Corbin]

Vidaza is given based on body weight. I get two injections of Vidaza each day for the seven days, and have them split into two areas. R and L Abdomen day one, R and L upper arm day two and repeat for the seven days. I have tried both injections one location each day, rotating between abdomen and upper arms, which results in slightly more localized inflammation at that site than splitting the sites. Either way my abdomen gets quite red and sore. The disadvantage of both in the same site for me is I get a rash on the back of my thigh if both injections go into my L abdomen on the same day. If I split one R and one L, no rash. Since abdomen has more room, I prefer the injections there. But not room for seven days of injections in abdomen alone. Back of arms don’t get as red as my abdomen, but they do get very sore.

[Bill Corbin]

I have been on Vidaza for 23 cycles, with each cycle consisting of 28 days. The first seven business days of each cycle, I receive Vidaza injections. Then the next 2 1/2 weeks are my recovery days; then repeat. My injections alternate between abdomen and back of upper arms. I prefer the abdomen because I have a little fat to make the subQ injections more tolerable; my arms have no fat. Injection sites get red and are uncomfortable, sort of like a sunburn or a bad bruise. My side effects are discomfort (tolerable) at the injection sites, constipation which is controlled with MiraLax, and nausea controlled with 4 mg of Sofran, and fatigue requiring a nap some afternoons. I am 79 y o. Began Tx Dec
2021. Regimen will continue as long it works. Began with low RBC’s, low Platelets, and critically low granulocytes, and low other WBC’s. Now CBC’s are staying either low end of normal or just below normal for all counts. Platelets have been in normal for last 18 cycles with roller coast counts from mid normal to low normal. Took five cycles of Vidaza to see improvement.

[Bill Corbin]

I was referred to Hematolgist/Oncologist in January 2021 due to consistently low RBC, WBC, and Platelets in spite of treatment for anemia. Bone marrow biopsy inconclusive for MDS, but ruled out leukemia and lymphoma. None of the cell lines were critically low so I was followed with quarterly CBC’s. After eight months my granulocytes and ANC dropped to critically low, so I had my second bone marrow biopsy in November 2021. That one was conclusive for MDS; I was started on Vidaza 7 days out of every 28 day cycle on December 6, 2021.

After five cycles of Vidaza my CBC’s were approaching normal but varied from just within normal to just below normal and have remained that way ever since.

I play golf Monday and Friday–18 holes each day–and ride in a cart. If the Vidaza treatments do not interfere with tee times, I play golf even during treatments. Usually treatments are given around 2:00, so I can play in the morning of those days.

Good luck and hope Vidaza works for you as it has for me.

[Bill Corbin]

I don’t have the TP 53 mutation, but do have Low Risk MDS with TET2 (3 mutations), SRSF2 mutation, and SMC3 mutation. Right now my MDS seems under control with nearly normal CBC’s. I have been on the Vidaza regimen of 28 day cycles with subQ injections on the first 7 business days of each cycle and then 19 days of no treatments. My side effects are fatigue, constipation, soreness and redness at the injection sites, and sometimes nausea. I take Miralax daily at breakfast for the 9 days of the injection period; take an afternoon nap as needed for the fatigue; take 4 mg of Sofran just prior to each injection to prevent nausea (works for me 100%); regular light exercise of golf (2 days per week) or bicycle riding. Soreness lasts for one week after the 7th injection day. I have had 21 cycles of Vidaza beginning December 2021 through June 2023.

[Bill Corbin]

I have had three BMB procedures. The first was in January 2021; the one that confirmed my MDS diagnosis was in Nov 2021. After five cycles of Vidaza injections I had my third BMB in Apr 2022. All three we performed by my Oncologist with lidocaine to anesthetize the soft tissue. The bone penetration and collection of fluid and bone marrow were done manually, using some kind of heavy needle like awl. She used a lot of pressure while using whatever the instrument was that penetrated the bone. Discomfort probably 3, definitely uncomfortable, but still tolerable.

[Bill Corbin]

I am a Vietnam Veteran also. I was diagnosed with MDS in November 2021. I applied to the VA for a disability based on a diagnosis of MDS after having served in Vietnam in 1971-72. My application was based on presumptive Agent Orange exposure. The VA denied my disability application because MDS is not a presumptive disease associated with Agent Orange. The VA informed me that they would reconsider if I could provide scientific proof that Agent Orange can cause MDS. Naturally I can not do that.

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