type of treatment to start

[Mike]

Hello all, My name is Mike, age 67 and this is my first time posting on this site. I was diagnosis with MDS SFB1 “low risk”. I ve been on watch-wait for last 5 years and my cbc started down. wbc 6.21, Hbg 9.2, rbc 2.24. Been referred F. hutch Seattle. For possible BMT or other options. I see alot of posting with different treatments options EPO, vs Hyomethylating agents. Did some of you had a option of a BMT, or took another route with the BMT for last resort. Just wanting some feedback on your choice. I`m fairly healthy and curious if my condition to possible knock this out now, (before AML) or start with another treatment. I realized there risks in any treatment. I appreciate hearing your story.
Mike

[Robert Sepe]

Mike, check my posts… use search term “homeopathic”….

Then If you’re interested in more detail, call email me…

Posts are under ‘questions for doctors’..

I can tell you I’m 81 and in good shape and have kicked this to the curb. I can walk 3+ miles daily as well as drive 12 hr cross country stretches without problems.

My approach is non-traditional and left my oncologists flaggergasted.

Bob

[Mike]

Hi Bob, yes would like to chat with you about your situation. Not sure how to reach out to you. here`s my email if you can connect directly with me. please email me at beartooth@email.com
look forward talking to you.
Mike

[bexar2120]

Mr. Mike, there are a variety of choices that can be taken. Myself, I was High Risk MDS ( TP53 ) that has progressed to AML. I have a complex genetic karyotype.

I actually had plasma cell myeloma (2013) that was controlled by standard care of treatment until 2017. I was given option of bone marrow transplant since at that time, my marrow was healthy and I had no other medical complications. Other words. I used my own marrow.

I have been monitored since April 2017 for Secondary cancer, which transformed to MDS TP 53 Jan 2023. Now I am at AML.

You and your healthcare team need to discuss the medical /diagnostic results of your testing. Those bone marrow biopsies and blood draws, x ray/CT scans are to give ya’ll the information needed to make an informed decision that suits your goal.

Lastly, you state your age and healthy condition. The Transplant specialist I had discussions with always said that time for the procedure is when your body showed disease under control and you have few comorbidities.

[Mike]

Hi Bexar2120, so are you saying its better to get BMT when I healthy and not wait. Just had doctor meet yesterday. I explain i didn`t want my BMT window to fade away. I refer to BMT to my last hail mary pass. If a treatment was required, they mentioned blood transfusions would be best instead chemo, etc. Also, Im being monitor F Hutch. I appreciate your input.

[bexar2120]

Yes Mike, since you ask a direct question, I will give you my response. I had option to take BMT route using donor cells from another individual. I chose NOT TO take this option. Background is that I am a laboratory professional and understand the complications from using donor cells. MY transplant doctor had performed this procedure on me using my own cells ( April 2017) and all was well until Jan 2023. It so happens that secondary cancers arise from BMT procedure- so you are monitored from that date onwards. I had no comorbid issues ( healthy in other words ), so that is why I had BMT in April 2017.
Now, I am in AML and have exhausted national clinical trial option ( x2) and decided time to come home for supportive care. I will express that BMT was offered but, I chose NO. I place importance on quality of life; not wanting my family to become care provider’s for this disease. Life has been Good for US. Recently returned from Las Vegas accompanied by wife and adult children. Quality of Life!
Discuss with your healthcare team your options and ask what the medical data says about overall survival rate after the procedure.

[Mike]

Hello Bexar2120, I would like to chat about your choices. If you don`t mind. My email beartooth@email.com I have few questions that would help me make the best decisions. I appreciate your input. Look forward connecting with you.
Mike

[Janet]

Hi Mike! I am impressed that you were on Watch and wait for 5 years. All of my genetics are low risk. I had 6 months before my Hemoglobin and RBC counts took a dive. I have completed 1 round of Revlimid which clobbered my platelets lowering them from 200 to 59. My white blood cells also went down. I did not tolerate the 10mg dose for three weeks very well. So the next dose is 5mg,but my platelets have to come back up to >100. It has been 3 weeks and my body is not in a rush to get back to 100. The Revlamid is thought to be well suited for one of the factors I have del(5q). So, long story short, work with the Oncologist to determine the best treatment for your type of MDS. I am considering a Stem cell transplant, but I am not in a huge hurry due to the 50-60 percent success rate for my age (70). Are you a Veteran? I am. I think it is likely I was exposed in the service.

[Mike]

Hi Janet, Thanks for your reply. I like getting all information to help me make sound decisions. Sounds like the Revlamid may not be choice out of the gate. I did consult my Oncolgist and he threw out chemo, shots, meds, and transfusions (bag of blood). What I came away with was transfusions may be the best options. I realized risk for all treatments. I guess what Im trying to find is the best (safest) treatment until BMT day if/when that comes. Just want to stay as healthy until then. No not a veteran. Retired pilot. No idea how my condition (mds) came about. Again appreciate your feedback.
Mike

[bexar2120]

Mike, resend your email or Do not mind speaking with you on phone, I have a land line. My email edcastor@sbcglobal.net. Just sitting at home giving the TV remote “heck”.

[Mike]

Hello Bexar2120, I did reach out yesterday with 2 emails. Not sure if you received them or spam folder. still interested in chatting if possible.
Mike

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