MDS (myelodysplastic syndrome): When to start treatment?

I have MDS and am recently been dealing with low platelets I have been in search of "natural" ways to raise their levels. PubMed has a good article on the effectiveness of papaya leaf extract. They don't know how it works but it seems to. Knowing I have upcoming labs I have been taking them as a short term trial. I will report on the results.

Hi @suetex, I’ve read the same article from Pub Med, along with other papers and appreciate your sharing the information. I just wanted to put the disclaimer in that this may not be for everyone and it’s important to speak with our oncologists before taking these supplements. Some may appear safe but they’re unregulated and ‘unknown’ quantities for potential impact with cancer patients and medications.

For instance, with my blood cancer I wasn’t able to have turmeric or pomegranate juice…two powerful antioxidants that were really tough to give up. But they would interfere with my treatment. Now that I’m past all that, I’m back to my favorites.
There are some very positive attributes with Papaya Leaf Extract with its anti inflammatory properties. I know your goal is to increase platelet levels and there are some studies which show that papaya leaf extract may increase platelets levels in patient with Dengue fever. But PLE may also have anticoagulation properties which would could be dangerous for patients receiving frequent blood and platelet transfusions, increasing the risk of bleeding. It may also interact with certain medications, affecting their efficacy or increasing side effects.
That aside I’m looking forward to your blood test results! Hopefully you see some positive numbers! Let me know, ok? ☺️

There is much to consider before a SCT. Besides the medical aspects, there are also the logistics such as lodging and relocating, usually for several months.
In response to your comment about medications for a lifetime…Initially there are several medications necessary such as anti-rejection meds, along with medications which will act as a temporary immune system. For many of us though, once we reach a certain point in our recovery, we’re no longer on any medications. That varies by individuals.

With your husband’s MDS classified as high risk and already receiving many blood and platelet transfusions while in treatment, it’s my understanding that it would be unlikely for him to reach a durable remission without the transplant.

He would most likely continue as he is now with his current treatment plan or similar, along with transfusions.
I think it would be very helpful to meet with a transplant doctor to get all the information and ask questions. It would give you a clearer picture of what to expect and maybe have you both feeling a little more comfortable with the decision…either way.
I’m here anytime as a sounding board, along with my fellow BMT friends who have jumped into this conversation too. We want to help with whatever you decide.
What is your husband’s biggest concern with having the SCT?

My husband was diagnosed with MDS in October, 2023. It is high risk; close to AML. His has the IDH1 gene mutation. He has extremely low red & white blood cells as well as platelets. He has had many red blood and platelet infusions, as well as bone marrow biopsies. He takes Vidaza chemo shots (usually one week per month) as well as Tibsovo daily. Labs twice a week, so he is a pin cushion. He is 73 years old, was very athletic before the disease, and had retired for 8 months before diagnosis. His metabolic numbers are beautiful, but his differential is horrible. He is afraid of stem cell transplant because of the unsuccessful stories he has heard. I wonder if this is what he can expect of his life without it. Will it be a series of chemo and pills? He is confined to the house and is inactive due to no energy. He has many friends and support from church, but is this what we can expect since there really is no cure other than a miracle from God?

His body’s rejection of the new bone marrow leading to certain death. No one has told us how long he can expect to live under current treatment. And maybe the hey don’t know. It really is no life outside of home except for hospitals.

Your husbands medical journey sounds exactly like my husbands. Weak, fatigued, and worried about the outcome. I pray for peace of mind. Always trusting God, we have to believe he is the healer of all. Prays for you and your husband.

Yes, we know the battle belongs to the Lord, however, we are at the mercy of medical doctors and the information they are taught to share with us. There is so much out there, people saying this and that is the solution. We seem to be at the doctor’s mercy. It is hard for him to keep doing what he is doing with no change in his disease at all. Chemo, blood and platelet infusions, targeted therapy, marrow biopsies, and labs twice weekly. All with no real change.

Yes, we know the battle belongs to the Lord, however, we are at the mercy of medical doctors and the information they are taught to share with us. There is so much out there, people saying this and that is the solution. We seem to be at the doctor’s mercy. It is hard for him to keep doing what he is doing with no change in his disease at all. Chemo, blood and platelet infusions, targeted therapy, marrow biopsies, and labs twice weekly. All with no real change.

Girlmidget, I know this new way of life seems unbearable but we have to realize the old way of life is passed, so we embrace this way of life and enjoy everyday as it comes. I think we will look back sometime and thank God for this time of reflection and as the old saying goes we slowed down and smelled the roses. I sound like everything is ok but there are the days I catch myself walking around shaking my head over and over in disbelief. But I try to get back on track and keep the faith.
Prayers, Elizabeth