MDS 80 yr old male

Good morning, @jenn2458 I’m so sorry your dad isn’t doing well with his treatments for MDS. The disease impacts the bone marrow and disrupts its ablity to produce healthy blood cells. It can also allow for overproduction of immature cells called blasts. These defective cells begin to outnumber any remaing healthy cells. So the red count and platelet counts drop and require transfusions as replacement. Meds such Reblozyl and Aranisep can help promote red blood cell production. But even then, unless disease progression is slowed, that may not be enough.
Chemotherapy is used to kill off cancer cells. In this case, the cancer cells are the blasts circulating in your dads system. Vidaza is a relatively mild form of chemotherapy often used in patients who are elderly. As we age, our bodies become less tolerant to drugs and can’t process them effectively. That makes treating cancer in an older person a challenge when more aggressive chemo therapies would be detrimental.

You’re wondering why your father isn’t a candidate for a bone marrow transplant (BMT). For MDS, the BMT would be an allogenic stem cell transplant using donor cells. While there isn’t an actual cut-off age there are guidelines in place to help determine who may be eligible. Age, co-morbidities and overal health figure in heavily. From personal experience, the pre-conditioning chemo is pretty aggressive. If your dad isn’t able to tolerate Vidaza, quite honestly, that may not bode well with the lengthy and much harsher treatments required for transplant and the rigors of the transplant itself.
Has his oncologist discussed an alternative to Vidaza?

We follow up this Thursday I will ask about alternatives...i can tell this has completely knock him out...6 months ago he was fine and it has just spiraled so fast. He is taking jadenu also to help pull the iron from his body because of all the blood transfusions and his ferritin keeps going up so that doesn't seem to help either...He is a very spry 80 yr old has always done for himself..im just not use to seeing him this way...

I’m so sorry, Jenn. I know this is extremely difficult for your dad, you and your family to see the rapid decline.
MDS can be a precursor to AML which is what I had 6 years ago, right now as a matter of fact. It literally took only 3 weeks for me to go from being super healthy, walking 10 miles per day with no effort to having less than 24 hours to live. It can come on like a Texas thunderstorm. One minute it’s sunny, then a cloud appears and the next thing you know have a raging apocalypse. The rapid rise of the blast cells in the blood stream push out all the healthy cells so there is little oxygen or platelets circulating. The body can’t function like that. That’s why the transfusions come into play. But those aren’t sustainable either as you’re finding out with the high iron levels.
Because my case was advanced and very aggressive my doctors had no choice but to admit me for 5 weeks with intensive chemo. It was really rough but 3 rounds got me into remission. (I did have a bone marrow transplant immediatly following however)
It is quite normal for blood numbers to drop to frightening lows during the first 10 days after chemo. It’s called neutropenia or the nadir period. Chemo kills quickly dividing cells such as cancer cells. Unfortunately it doesn’t discriminate and kills off all blood cells, mucosal cells lining the stomach, gut and mouth, hair follicles, etc. About the 3rd week after chemo, the blood cells start to regenerate and often return to almost normal right before the next round.
The goal is to knock down the cancer cells.
Do you know if it worked to reduce the number of blasts in his blood count?

I am 80 yo as well. Blood disorder manifested into MDS/AML May 2023. Blasts 26%. By Dec I was in terrible shape admitted to hospital with 50% chance of survival. Previously i had nearly 40 transfusions...it was maddening. Started vidaza with ventoclex in hospital on 7 Dec '23. On Xmas day first sign of recovery appeared so slightly. 7 days later all blood #'s were at acceptable levels. All had been close to zero. I even wrote my own obituary in preparation of the worst.
Vidaza/ventoclex tolerance has been amazing good. I'm on 14th cycle with AML in remission by decreasing dosages to 3 days on vidaza and 7 on Venetoclax.
I'm very grateful 🙏 for my oncology team, supporters and God, They have been amazing.
Every one is different often rqr two opinions. Other health factors play a role as well. DON'T GIVE UP....GET THAT SECOND OPINION. DEFY WHAT'S NORMAL. YOU ARE YOUR BIGGEST FAN. STAY STRONG IN SPIRIT AND PRAYER.

Thank you jumping into this emotional discussion, @dancouclanel4! Your story is so encouraging and I really hope this brings some much needed reassurance for @jenn2458 and her father to stay the course.

Chemo is never easy, and as you know, there are some difficult days. But I’m with you, it is so important to remain strong, positive and to not give up! We need to keep that spirit of endurance fueled with the energy hope can bring!

You’re a wonderful motivator! What are your favorite past times?

I have always been a staunch outdoorsman...hunted moose/bear in British Columbia, elk in Idahos Bitterroots, River of No Return Wilderness and Clearwater, NM San Pedro Wilderness, Colorado, Montana, fished Situk River for steelhead in Alaska, trout fishing in NM, Arkansas, Colorado, to name a few. At 80 it is risky to negotiate such terrain any more. Riding horses to higher elevations camps. I miss it.
I am now running for city council opposing municipal corruption of public assets etc.

College included Bachelors and MBA ..Oklahoma State...volunteered for Vietnam which contributed to my leukemia from agent orange, owned my own biz for many years got into consulting on larger projects eventually driving a $200,000,000 military housing project at Barksdale AFB. Very rewarding.

I witness so many with this disease that are hungry for hope and encouragement. While I fought several months I remember feeling the same way. In May 2023 my oncologist informed me I had 12 months OS (overall survival) from that date I had loads of transfusions keeping me alive when my blasts exceeded 20% to AML. I am a Christian, a Catholic, knowing God's finger prints are on my journey...forever grateful.
Today my oncologist calls me his star patient. I am humbled...so want to share to those who need inspiration to fight on.

@dancouclanel4 I’m seriously moved to tears reading these 3 replies from you of your life and your incredible spirit of endurance! First, let me thank you for your years of service to our country. You’ve lead and are still living an amazingly rich and full life journey! I just felt there was more to your story and I so appreciate your sharing all of this with me!

Your MDS/AML experience is a huge inspiration after all that you’ve gone through and endured. Just a few years ago, there weren’t many options for those of us ‘in a certain age group’ if we couldn’t tolerate the more aggressive chemo or be a candidate for a BMT. What you’ve shared here is hope!

So again, I thank you for sharing your very positive experience with Vidaza and Venetoclax to the group. I hope you’ll be a regular contributor here! You’re not just a star patient with your oncologist. You’re a shining star in Connect too! ✨
Good luck with your run for city council! Let me know how it turns out for you, ok?

Jenn2458
Something very important I forgot to mention....vidaza and venetoclax work in combination to kill and rid of mutated blood cells that are harboring precious space for good blood cells. Accordingly a week sometimes two weeks afterwards hg, platelets, and wbc, and anc will go down. This is expected. After months of the same routine my oncologist reduced from7 to 5 to 3 days only 100mg of vidaza. In or about 6,7 months later hg, platelets, anc started rebounding quicker. In fact I only see him every other week and have not had a transfusion since July 2024. My body is responding.
From what you indicated your dad's hgb went from 4.4 to 7.4.....that's progress. Also I take anti nausea pill before treatment or I would get sick. My first time I threw up for 5 hours before I figured out what to do. That's old age....not the disease. Talk to his oncologist about this. My oncologist is Dr Caleb Scheckel at OCSRI tulsa oklahoma should he care to get specifics. And good luck. I've experienced alot of what your Dad has so feel comfortable in saying.....he is improving. Hang in there.