High risk MDS on second round of Dacogen

[Donna Hovis]

My father was suddenly and surprisingly diagnosed with high-risk MDS in August of 2023, at the age of 82. We have never heard of this disease/cancer before. He has always been active and not one to sit around. He was immediately started on Vidaza. Unfortunately he was also diagnosed with pulmonary fibrosis in 2022. Nothing was done about the PF and honestly he didn’t think much of it at the time. But then this MDS comes into the picture and everything has gone down hill since August 2023. It seems to me like the MDS treatment (Vidaza) is making the PF much worse, but the oncologist insist that it isn’t. As soon as my father started taking the Vidaza, he all of the sudden had to be on oxygen 24/7 and has not been able to be off of it. This is very frustrating to him. He is used to doing what he wants to and when he wants to. He and my mother have enjoyed life very much. He is pretty stubborn LOL. He is a retired Air Force Colonel and is not used to people telling him what he can and cannot do. You can only imagine! He started off treatments in August with his hemoglobin at 7.4. He had one blood transfusion at the beginning and did not need any more transfusions until January 10, 2024. He then needed 4 units of blood. After his 6th round of Vidaza that began on January 29, 2024, he then needed 3 units of blood and 1 unit of platelets 2 weeks later. His need for oxygen has increased to 4L and he gets very weak and went from walking with a cane, to a walker, and now he has to be in a wheelchair to go more than 15 feet without getting short of breath (even with his oxygen). His oncologist/hematologist decided that the Vidaza was no longer working and switched him to Dacogen. He also had a second bone marrow biopsy done and there has been no change since the first one was done in July of 2023. It has not advanced to AML at this time. He had to have 3 units of blood and 1 unit of platelets after his first round of Dacogen. He turned 83 on March 17. Our family was so thankful to celebrate with him! He did his second round of Dacogen on April 1 and as we speak, he is in the hospital getting more blood and platelets, for his hemoglobin was 5.9 today and platelets were 9. Doctor says this is expected when starting Dacogen. But claims that if more transfusions are needed more often, then this indicates that Dacogen is not working and there is no next step. Has anyone else with high-risk MDS on Dacogen had a similar experience? The PF is not helping either. His doctor stated that he has never known anyone to have 2 chronic diseases like this at the same time. They both affect your oxygen. My sweet father has had a hard time accepting the fact that he will not get better (from MDS or the PF) and that one of these diseases will eventually take his life. I appreciate anyone’s thoughts on this matter.

• This topic was modified 5 months ago by Donna Hovis.

[Ashley Moncrief]

Hi Donna,

I’ve had other people reach out about a possible link between MDS and lung diseases. I’ve copied the link to two articles I found so you can take a look.

https://pubmed.ncbi.nlm.nih.gov/21742229/

This article was published in the National Library of Medicine. The conclusion of the article is that more research is needed, but it does give a list of lung conditions which have been seen in those with MDS.

“The non-infectious pulmonary complications of myelodysplastic syndromes and chronic myeloproliferative disorders can be classified into several clinical entities: tumour syndrome, pulmonary fibrosis or diffuse infiltrating pneumonia, autoimmune reactions including vasculitis, Sweet syndrome, organizing pneumonia, pulmonary alveolar proteinosis, pleural effusion and pulmonary arterial hypertension.”

https://ascopubs.org/doi/10.1200/JCO.2016.34.15_suppl.e18551

This article was published in the Journal of Clinical Oncology. The information was pulled from Mayo Clinic, which is one of our Centers of Excellence. They studied 827 patients and found that 2% had interstitual lung disease. It was also interesting to see that 43% of the cases involved patients with what is known as a “deletion 5q.” This is the type of information that is gained from the genetic testing.

I do believe that more research is needed as most of what is out there are case studies of individual patients, but I do think hematologists agree that there may be a link between certain lung diseases and MDS.

All that to say, your father is not alone in experiencing both at the same time.

Hope this provides a bit of comfort. Our thoughts are with you!

Ashley

[Kevin Dugan]

Donna, i am surprised by what your dr.said. i have had slow MDS since 2019 and have developed 4 other chronic conditions. Fortunately, my Oncologist keeps an eye on everything and refers me to other specialists as needed. Underlying all this is my immune system is out of whack. MDS and PF are associated with possible immune disorders. The doc should check his immune system functioning.

[debbie stern]

I have been on a micro dose Dacogen since 2019 and am still stable. The protocol was deveoped by Dr. Yogen Saunthararajah at Cleveland Clinic. It is a micro dose and does not drop blood counts. He has written papers about it starting about 15 years ago. I would suggest you consult with him or ask your Oncologist to reach out to him to see if you are a candidate for this protocol. There are no side effects.
Also PF is fairly common with MDS according to Cleveland Clinic. Best of luck!

[bexar2120]

Ms. Donna, never been on DAcogen, but I have been to Houston Med Ctr – Mays cancer center for clinical trials for MDS that progressed to AML ( Oct 2023). Not able to find more time with the two separate clinical trials, so we decided time to come home. The AML will run its’ course.
While in MDS stage, platelet and blood transfusions were par for the course, weekly actually. At this moment, I receive blood transfusion once a week; platelet count has held study.
My healthcare team is supportive of my decision to continue with supportive care, which will eventually turn to hospice care. Time left is unknown with this disease. I might add that I have TP53 AML with complex genotype, we do not fare well as far as life expectancy.
The pulmonary function is another chronic condition that coincides with the MDS. Terrible circumstances that ya’ll have to deal with. Myself, use a wheelchair/walker for any length of distance.

Best of Luck to You and your Father

[Donna Hovis]

Update on my father – My father’s transfusions started being needed sooner together. He hates going to the hospital to get them! Been on oxygen 100% of the time as soon as he was diagnosed – very strange. He has slowly lost his strength and ability to walk well. Has to use wheelchair 100% of time now. Two weeks ago, as he needed yet another blood transfusion, he told his oncologist that he was ready to quit chemo (Dacogen just didn’t seem to be working) and quit transfusions. His oncologist agreed and Hospice was called in. Today, he is slowly declining and could pass away any day. We are just trying to enjoy our time with him and keep him comfortable. This is such a terrible disease and no one really has even heard of it!

[Pat Lawson]

Donna, I lost my husband 3 1/2 years ago to MDS. We had hospice come in when he decided to stop transfusions. This is so hard on you to have to sit by and watch this happen to him but how blessed he is to have you there with him. Surround him with memories of his wonderful life. We had picture collageges all around my husband’s bed. Play his favorite music. If he will let you rub lotion on his legs and feet and arms….just appreciate every chance of contact and touch that you can have with him. Lean on those hospice nurses that’s what they are there for and I truly believe they are angels walking this earth. Most of all take care of yourself because he wants you to carry on his legacy. I am prayimg for God’s comfort for him, you and all your family.

[Donna Hovis]

Thank you Pat for your kind words – you absolutely understand. He has been hallucinating a lot lately and today I told him (over the phone – I’m in TN and he is AL) that if he sees angels wanting to take him with them, then let them. Our faith in God is strong and we trust God will let him pass away peacefully. But it is hard to watch him go from such a strong independent and wise man to this frail, and totally dependent on other man. I go every week right now and stay for a few days to help them. I’m blessed to be self employed where I can do that and my husband and teenage children are supportive of me doing that as well.

[Author]

Posts