[Cliff Potenza]

I was in Vidaza for over 3 years and never paid for it because it was an integral part of my cancer treatment and was covered under part b.

[Cliff Potenza]

I was in the same situation as your MIL in April/May of last year having been on Vidaza for my MDS for over 3 years. The drug failed and combinations of other drugs failed as well, I was getting transfusions and platelets quite often. I transitioned to AML I was 72 y/o at the time. My Dr. at the Moffitt Cancer center in Tampa FL recommended me for a Bane Marrow Transplant. I started the process of a BMT last August with very aggressive Chemo(often not tolerated by someone over 64 y/o) to put me in remission, followed by a second round of Chemo a month later followed by more Chemo and my BMT in November. It is now 10 months, I feel good, no sign of AML. I would find a “Center of Excellence” near you and get an opinion form them before moving ahead.

[Cliff Potenza]

Lee

I was diagnosed with MDS in October of 2016 and started on a regimen of Vidaza IV 5 days a week every 28 days in February 2017 after a BMB showed blasts of 8%. I always scheduled my treatments late in the after noon (after 4 pm) so I didn’t ruin my days. I was on on Vidaza (Azacitidine) for 3 1/2 years until my MDS transitioned to AML. I was 70 y/o when diagnosed and after 3/12 years my vidaza treatments started to fail. The doctors added some other drugs but they didn’t work and I required blood transfusions and Platelets. I decided to get a Bone Marrow Transplant and in July of 2020 I started the process with aggressive Chemo, a month in the hospital followed by some followup chemo and finally a BMT in November 2020. Today I am healthier than I have ever been. I don’t work but I play golf 3 times a week, swim and enjoy life (as much as possible with Covid-19). So to answer your questions –

*Can you work while getting treatment? I know you lose energy but how sick do you feel?

During my Vidaza treatments my life did not change at all. I never had any side effects and I continued ss if I never had MDS. It was a pain spending an hour every day for a week getting infusions but I did it late in the afternoon and when I was done I’d pick up my wife and go out to dinner.

*Are you more sick on the days you are getting the drug than the 3 weeks off in the cycle?

I was not sick at all during the weeks of my trestment.

*Can you exercise and stay in shape during treatments. I assume my running 6 miles a day is done but what can I do to keep my body in shape during treatments.

At my age I am not a runner but I was able to play golf 2-3 times a week and swim regularly. I don’t see why you would not be able to exercise. I never had a lack of energy.

*Will taking supplement immune boosters like Zinc help while being treated.

I never took any supplements so I can’t be of much help here. Ask your Dr.

I hope this helps you. Good luck, keep up a good attitude, it makes a difference.

[Cliff Potenza]

If you are near a center of excellence like Sloan Kettering in NY or Moffitt in Florida you might want a second opinion. I had MDS, was on Vidaza then they added Ventoclax then some other drugs and finally last November had a bone marrow transplant and I am now doing well.

[Cliff Potenza]

I appreciate all of your responses. Unfortunately I spiked a fever and ended up in the Hospital for a week putting off my BMB until next week. I have been needing HLA Matched Platelets about 2-3 times a week. I’m hoping for a good result from my BMB. I’ll keep you all posted.

[Cliff Potenza]

Cathy,
Keep the faith. I am a 73 y/o male who was diagnosed with MDS in Oct. 2016. I started on Vidaza in Feb. 2017 … I do not have any underlying other health problems so I tolerated it well. It’s use eventually wore out about 6 months ago and Venetoclax was added but after 2 cycles it did not seem to do anything. My drug counts have been very low, WBC .1 – .4, Hgb 6 – 9, platelets 0-8. I stopped the venetaclax and started on Dauismo and cytarabine. My blasts have gone from 5% to 12% to 20% (AML) back down to 11% after the Venetaclax round 1 but back up to 19% after the second round which is why I was put on Cytarabine and Daurismo. I also have had unexplained fevers which usually they can’t specifically fine a reason for it but it has hospitalized me 3 times in the last 4 months. I need platelets a couple of times a weeks and blood transfusions every couple of weeks. On non-infusion days I feel good and normal. I am hoping to be able to get a BMT but I won’t know until after my next BMB.

I don’t know who is treating your Dad but I found my local oncologist to be capable but I knew I needed specialists. I went to two “Centers of Excellence” specializing in Blood Disorders…The Moffitt Cancer center in Tampa and Sloane Kettering in NY. They both have been incredibly helpful suggesting treatments, new drugs, clinical trials etc. If you are not using specialist at “Centers of Excellence” I would certainly recommend that you find one.

If it’s any consolation when I was first diagnosed in Oct 2016 my oncologist said 9-12 months… I’m still here almost 4 years later.

My dad was diagnosed with high risk MDS December 2019 with 5q and 7q deletions and 12% blasts. Dr said he may have 12-16 months. His HGB stays at 7.5 or lower, PLT at 12 or lower, WBC less than 1. He gets blood and platelets at least once a week sometimes twice a week.

[Cliff Potenza]

Mark – These are certainly challenging times for anyone especially this if us that are immune system compromised. Perhaps I’m am the ultimate optimist but I have refused to give in to having this disease control my life.. I keep up my lifestyle and try to keep a good attitude. You are right… this crappy disease is not curable without a stem cell transplant. After 3 1/2 years of treatments I am struggling with the same questions you are relative to a stem cell transplant, my concerns have focused on the impact of the more aggressive Chemo required, finding an appropriate match, being hospitalized in isolation for a month and, of course, the success rate. After having spent an inordinate amount of time speaking to people who have had SCT’s and talking to my specialist, I have become less anxious and more willing to think about it, but, only as my last resort which I’m told could be years from now. It appears that SCT are no nearly as bad as they used to be. The Chemo has side effects but appears to be mostly fatigue. The hospital stay seems to mostly be required to monitor for infections although I have spoken to some people who have had the procedure done as an outpatient. I happen to have a sibling that might be a good match, I won’t know until she’s tested, but I’m told there is rarely a problem finding a match in the “bank”. I’ll keep you posted as I move through the process. In the meantime, I have now changed to a new Chemo protocol which is a daily pill and a self administered sub-cutaneous shot 2x a day for 10 days a month. The goal is to lower my blasts below 5% so that I can explore other options including SCT.

[Cliff Potenza]

Mark.. I am older than you but I was diagnosed at 69 and started a chemo regimen a few months later. I was put on a drug called Vidaza. It is administered by IV 5 days a month every 28 days. It takes about 1 hour and there are no side effects. I have never had to compromise my lifestyle.. I am very active, I sail, golf, travel to Europe but just have to work around my treatment schedule. I don’t know where you live but I would recommend you find a Cancer Center of Excellence near you and talk to a specialist. I use 2 specialist, one in Florida and one in NY…. like multiple opinions. Have a good attitude and live your life.

[Cliff Potenza]

Patricia,
Sorry to here of your “dilemma” but it is not a death sentence. I assume you have been diagnosed with MDS. I has had 16 months of Vidaza treatment and occasionally have low enough counts to require blood/platelet transfusions. My body has adjusted to the low counts and I have very little fatigue. Give the Vidaza a chance to work. If you haven’t yet, I would find a Center of Excellence near you and get another opinion and have a speciaist to refer to as you continue with treatments.

[Cliff Potenza]

Mark,

I am 73 y/o and was diagnosed with MDS in October of 2016. Like you I am active, I play golf 2x a week and am always working around the house. I don’t know where you are located but you should find a Center of Excellence… I use both The Moffitt Cancer Center in FL and Sloane Kettering in NY. Like you I started with low blasts (that’s good) and I was put on a Chemo regime that used a drug called Vidaza which is administered 5 days in a row every 28 days. It is an IV and after a few months of treatment I had a central port put in (minor surgery) to ease the burden on my veins. The infusion itself is pretty easy, takes less that 1 hour and had no side effects. Now after having 36 cycles of Vidaza my blood counts have plateaued at a low level but my body has adjusted so that I don’t feel any different, however my Blasts increased and a drug called Venetoclax ( a pill) was added to my Chemo regiment and I was put on and antibiotic, antiviral and antifungal (all pills) prophylactically to keep from getting any infections. My body continues to adjust to the counts and I feel well and am still active. What I am looking for from treatment is a reduction of my Blasts (under 5%) at which time I can consider a Bone Marrow Transplant, probably usings marrow from my sister. Perhaps that will happen in the next few months.

[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

[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.

[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.

[Cliff Potenza]

Pat,
Thank you for that information. I don’t know if I am unusual but while on Vidaza (5 days in a row by infusion every 28 days) for the first year(2017), my counts were low but steady (RBC 3.4-4.0 WBC 1.5 -2.5 HG – 10-12 Plat 40 -100). In the second year(2019) of Vidaza treatment they change a bit (RBC 4.0 – 3.0 WBC 2.2 -1.5 HG 12 -9 Plat 80 – 60) I my third year (2019) the counts started to drop (RBC 3.0 – 1.8 WBC 1.5 -.3 HG 9 – 6 Plat 60 -10). I started Veneclax 2 weeks ago and am waiting for some/any results. However I have never had any real bleeding incidents… I bruise easy but even when I cut myself I clot fairly quickly, I have occasionally bin fatigued but I still manage to play 18 holes of golf 2x a week. Twice inn the last few month I have had a couple of unexplained fevers which hospitalized me for one week each. They never were able to explain the reason for the fever and never found any infections. So now I take prophylactic antibiotic, anti viral and ant fungal. I take 400mg/day of Venetoclax and after my next round of Vidaza (in 2 week) we’ll do a BMB to see whats going on. I am cautiously optimistic. I hope your husband finds some combination of drugs which can treat him succesfully.

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