New

[Patricia Shull]

Hi. I am a 74 year old female who was diagnosed with MDS in November 2019. I was told I have Intermediate 1 stage. My RBC, WBC, platelets are all very low. My hemoglobin is 8.
I was started on Vidaza within 2 weeks. 3 shots per day for 5 days and repeat every 28 days. My blood work just keeps getting worse. My oncologist (and my husband’s as we both have cancer) told me not to worry. Sometimes it takes 4-5 months to even see if the drug is working and there are other drugs.

I love this hospital, trust my doctors, and the infusion center is top notch.

Why do I feel so down? I am normally so up.
And has anyone else taken so long to respond to Vidaza?

Any thoughts on this?

Thanks in advance.

[Kathy Stermer]

I stuck it out for 6 months on Vidaza after failing to respond to Revlimid after a year. The Vidaza did nothing but cause my counts to tank and I didn’t feel good most of the time. Have intermediate 1 and have been off everything since the end of December except antiviral and transfusions when needed (which was every 2-3 weeks but now have been going longer before needing blood). Not spending time at so many appts and feeling better more of the time than not has made my quality of life much better. All I know is this was the best choice for me. Odds of a successful transplant not good enough and clinical trial too much time involved in hospital so will continue on as is and live life to the best I can for now. It’s a confounding disease which has a different course for each of us. Wishing you luck.

[Cliff Potenza]

Pat,

I am a 73 y/o male and was diagnosed with MDS 3 1/2 years ago and have been on Vidaza for 37 cycles (I had a port installed) and get the drug by infusion. It took me 4-5 months to see a steady increase in my counts. My WBC and ANC had been in critical territory but recovered to a level which allowed me to sustain my lifestyle including playing golf 2x a week. However after about 30 months of treatment the drug started to lose it’s efficacy and after a couple of infections and hospitalizations it was clear that Vidaza had stopped working and I required several transfusions. More important, my blasts 3 years ago were 5% but was recently measured at 185 moving me much closer to transitioning to AML. My doctors suggested that I add a new drug called Veneteclax which has shown great efficacy when added to Vidaza. I started with my last cycle of Vidaza and a BMB 5 weeks after I started my blasts were reduced to 10%. We are hoping that after the second round my blasts will be below 5% which they consider remission. My counts, however, are still low and may take time to recover… we’ll see.

[Patricia Shull]

Cliff

Thanks for the info. My doctors are considering a port and IV for me too. I have nasty pain in my arms after injections for about 2 weeks. Gives me encouragement.

[Cliff Potenza]

Pat,

The port is no big deal and really makes life much easier. I went months with IV’s until my veins were so scarred it become difficult to continue.

[Patricia Shull]

Cliff

My husband still has his from Pacreatic Cancer. He was one of the lucky ones. Still has to have it flushed every six weeks.

Pat

[Jerry Allen]

Cliff
I’m 73year male. Next week start 55th round of vidaza. As of 4 weeks ago my platelets count was back in normal range 154000 hemoglobin up to 10.1 and WBC up to 2.0. Looks like the drug is working. Interested in your success with veneteclax. I’m having another BMB Tues. Hoping it shows improvements. We have discussed transplant,tough decision. The chemo is very hard on other organs. Right now my quality of life is very good. Had you considered the transplant?
Later
Jerry

[Jerry Allen]

Cliff sorry. 5th round NOT 55th.

[Cliff Potenza]

Jerry,

I am happy to see your results from Vidaza. Like you, my counts increased after stating vidaza and continued to be relatively stable for more than 2 years. I had some intestinal issues(infections) that hospitalized me last spring and since then my counts have been steadily dropping. But, like you I remain pretty asymptomatic, no real fatigue to speak of ( a short nap gets me right back), no shortness of breath or bleeding, still lay 18 holes of golf 2x a week. However, my BMB’s have shown a steady increase in blasts, going from less than 5% 3 years ago to 12% 2 years ago to 18% this past December. It was that transitioning to the level of AML (20% blasts) that initiated the addition of Veneteclax to my Vidaza routine.

The ventetoclax was administered at my last vidaza cycle on 1/20/2020. It was ramped up from 100mg a day to 400mg a day very quickly. However, the addition of prophylactic anti-virals, anti-fungals, and anti-biotics required the reduction of the venetoclax to 100mg a day. Reasearch has shown that those “anti’s” increase the effective dosage of venetoclax by a ratio or 2 to 4:1. I had a BMB after 5 weeks and it showed a reduction of my blasts to 11%, pretty good but the Drs were hoping for less than 5% blasts which does occur after one round of venetoclax in some patients, for others (me, I hope) it takes 2 or more cycles. I have another BMB on 3/16 to see what the percentage is after 2 rounds. However, since venetoclax is a depressive agent my blood counts remain low (RBC 2.3, WBC .5, Hemglobin 12, plateletes 7.5) and I have had to have a platelet infusion and a unit of blood. I’m told that if my blasts go below 5% they consider that remission and they might suspend or delay either the Vidaza or the venetoclax to allow my bone marrow to start recovering…we’ll see! Like you I have put some thought into a transplant but I am also concerned about the “risk reward” of the aggressive chemo required and the success of the transplant since after that there are no alternatives. I have an appointment in a couple of weeks with a transplant specialist at Sloane Kettering in NY to discuss it. In the meantime my quality of life is good and I will continue to enjoy it.

Cliff

[Mer Stpierre]

Hi Pat, I am a 77 yo female who was diagnosed with MDS RAEB2 October 18,2019. I had 2 transfusions and started Vidaza I.V. in November. Numbers thanked and I had transfusions in Nov, Dec and January after treatments. My hemoglobin never went above 8 and I was tired and depressed. After the transfusion in January my neutrophils went to -0. My oncologist held off for another 2 weeks and then decided to lower Vidaza to 50%. My numbers all increased by third infusion (the 50% and 5 week schedule, my hemoglobin went to 11.6, wbc and neutrophils still at moderate neutropenia but I feel more optimistic. Just finished another round, 4th and hoping for continued good numbers. My oncologist told me there should be progress by 4th or 5th but it would be hell before that. He was right…hang in there, it takes awhile. Positive thoughts and energy to all of us.
Mer

[Patricia Shull]

Mer St Pierre

Thank you for the upbeat news. Read your post 3 times just to feel better!

I see my oncologist again on Monday, After bloodwork, and then back to Infusion Center.

I’m being treated in Houston. We are taking a big hit with the Covid 19 virus Right now and I worry about possible infection. My husband, who received his last chemo for pancreatic cancer and I are laying low to avoid infection.

Thanks for the encouragement. Sounds like you are going to beat this.

♥️Pat

[Author]

Posts