MDS (myelodysplastic syndrome): When to start treatment?

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? ☺️

Update: Dave went for his follow-up appointment with his vascular surgeon. His Doctor was very pleased with how things are looking. Only a slight narrowing in one of the repaired arteries, otherwise good!
Has been getting Arenesp shots every 3 weeks. Started on 12/18/24. His hgb came up to 10.4. So things are slowly improving. Still tired but otherwise feeling okay. Going to stay on this path for now, as his hematologist is pleased with the progress. Up from 9.4.
As far as supplements, he still takes Protandum tablets and collagen drink. His hematologist is aware and has not said to stop. Hard to know, we don't want to jeopardize anything. Hope you are all hanging in there and making gains. Celebrate the small things and keep pushing forward! 😀

Thank you for all your helpful comments and caviats. You are obviously well read and informed. I am not being treated at this time for my MDS and are hoping to avoid transfusions. I'm just taking IvIg. I will post on how the suppliment seemed to work or not.
(The IvIg is for another condition.)

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.

Hello, @girlmidget. Reading your post this morning, I can just feel the sadness and despair for the circumstances that you and your husband find yourselves in right now. As humans we want to feel settled and in control of our situation. It’s overwhelming when we’re not.

It seems to me there’s been a mental tug of war for both of you with whether or not to have a BMT since the diagnosis. From everything that’s been shared with our conversations, there have been significant health changes for your husband since the time when the BMT was first offered.
Quite honestly, I think the next step should be to actually speak with a BMT doctor to see if the transplant is even feasible at this point. If the answer is no, and since your husband doesn’t want it anyway, then that option would be off the table. I really think that may ease a lot of the anxiety about the subject. It won’t always be weighing heavily in the back of your minds.

You’re both in a world of hurt right now and I know this feels overwhelming. @dax1million was so helpful in her reply to you. She and her husband are going through a similar journey. I think we need a group hug this minoring. Le sigh….

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