Low risk MDS patients who opt for no medical/drug treatments
April 29, 2018 at 12:19 am #36355
Just wondering how many diagnosed MDS patients choose no medical or drug treatments and how they are coming along . . . and the number of years they have survived thus far? It seems from my little experience with a few doctors, that they are eager to start treating you, despite the fact that you are feeling OK and your bloodwork is just a little under normal.Although impossible to determine the relative outcomes of TREATMENT VERSUS NO TREATMENT from a given individual, it seems feasable that a person may live longer without treatments. Who’s to really know if the treatment turns out to be more harmful than the disease itself, when left untreated? So, it would be informative to know the experiences of MDS patients who have NOT HAD ANY MEDICAL TREATMENTS FOR THEIR PARTICULAR CLASS OF MDS. In my case,(78 yrs old) my blood levels of RBC, HGB, WBC and Platelets began dropping slowly from normal about 8 years ago, all going into the lower abnormal limits about 18 months ago. Positively diagnosed with MDS from bone marrow biopsy last September. My low score at that time was 1.32 with few or no blasts and a few genetic mutations(7Q deletion and something else). Whos to know if my blood levels will stabilize at a given low level, or get lower very slowly over several years?April 29, 2018 at 9:07 am #36359rarParticipant
With low risk MDS you stand to live longer on average with wait and watch. With high risk you have an edge with transplant. When diagnosed I had MDS so mild I would never need treatment. 2 months later my ANC was .1, blasts 13%, other blood counts critically low. I am still alive and MDS free 4 years later. My initial odds when MDS flared were 4% to live 3 years.
RayApril 29, 2018 at 9:40 am #36360tamParticipant
I am 64 and was diagnosed with MDS in 2013 based on a bone marrow biopsy. When I learned of my disease I decided to go back to my annual physicals and found a complete blood count done in November 1991. My counts were low then. My doctor at the time brought the low counts to my attention and attributed them to possibly my training for marathons. He did not order follow-up monitoring or a biopsy at that time. My next complete blood count wasn’t until 1998 with a different family doctor. My counts were only slightly higher then but still borderline. From 1998 onward I’ve had a complete blood count nearly every year and have remained on the low end. It wasn’t until 2013 that my doctor decided to refer me to a hematologist who ordered a biopsy. My counts have changed very little over the last 26 years. In 1991 my counts were as follows: platelets 134, RBC 3.9, WBC 4.0, and hemoglobin 12.8. I am basically at these same levels now. I am in wait and see mode and continue to have a very active lifestyle. It’s possible I’ve had MDS-unclassified for over 27 years. During that time period I have not noticed unusual bleeding, higher than normal infections, or tiredness. My goal each day is to stay in good health through strict diet and exercise and try to keep my immune system strong.April 29, 2018 at 6:20 pm #36365MichaelParticipant
I am 65 yr old and diagnosed low risk 2 yrs ago. RCMD with low WBC and low ANC. I’ve been on watch and wait since diagnosis. I get monthly blood work and just had my 4th BMB with no sign of disease progression. When the Docs suggest treatment I’ll be receptive to their recommendations. I have 3 mutations. I living life cautiously with awareness that things can change.April 29, 2018 at 8:57 pm #36366
Michael……….What are your mutations? DonnaApril 30, 2018 at 9:07 am #36372MichaelParticipant
I have mutations: ASXL1, IDH1 and SRFS2.April 30, 2018 at 9:48 am #36373Allan RomriellParticipant
Diagnosed MDS-RARS from BMB june of 2017(64 yr old at that time). I had blood work done in april 2017 for a physical. Platelets were 75, hemoglobin 11 white and red counts slightly low. I have been on watch and wait since then. My numbers have fluctuated some up and down and on the 10th of this month platelets were 137 hemoglobin 11.4 white count at the low end of normal reds were 3.87 so overall about the same as a year ago with platelets up to a better range. My oncologist feel I could go as long as 5 years before needing treatment, but I know it can change on a dime as well. I will continue to wait and watch and hope for the best.May 15, 2018 at 7:19 pm #36472Linda TurcotteParticipant
My husband has been diagnosed with MDS for 15 years and three years ago they gave him 5 years. He has done one clinical trial which put him in remission until this year . His hemoglobin hangs in around 8 now he receives blood when it goes down to 7 his plalette are around 50 really low white blood and high red blood count and a ferritin of over 6000 because of all the blood transfusions now he is doing Defferral two times a week to lower the ferritin count . They just told us last week he can not have a bone marrow transplant because he has had strokes and he has a leaky heart valve and a rare blood type he has AB positive. No donors avaialabe so we are now looking for a clinical trial my husband is all of 67 years old He’s tired all the time and when his blood goes down to 7 has shortness of breath I really hate this disease! Thank you for letting me shareMay 15, 2018 at 7:56 pm #36473sharon vandevenderParticipant
I have not been officially diagnosed, but have my first bone marrow biopsy scheduled next week. Quite frankly, I will be shocked if the Dr. told me otherwise. For what it is worth, I have had low red, white, platelet, and hemoglobin levels since 2006. No Dr.has ever been particularly interested in the until 2 years ago (my gyno of all Dr’s noticed). So I obviously have had no treatments. The hematologist wanted to do the biopsy, but I was too scared, and asked if I could bring up all my bloodwork number through diet. I was successful over a 2 month period. They were still low, but not flagged low.
FYI, I am wary of conventional medicine for chronic issues.
I will update my reply asap. This is the first time I have felt it is affecting quality of life as I have been fatigued and out of breath a lot lately. Time to clean up my diet again…May 15, 2018 at 8:43 pm #36474
Michael…………..My mutations are ASXL1, SRFS2, RUNX1 and TET2. When I look them up, I don’t think they are very good. DonnaMay 15, 2018 at 8:48 pm #36475
Sharon…..Keep us informed and I hope you have good results from your bone marrow biopsy. My bone marrow biopsy didn’t show “full MDS” but they check my blood every three months and say that I will start chemo when my platelets reach 50,000. They have been dropping for a few years and now are about 67,000. Good luck next week. DonnaMay 16, 2018 at 12:04 am #36478
You have had low blood counts for a very long time with no noticeable negative effects. Can it be that it’s just in your nature(body chemistry) that your counts happen to be low(just out of range of “normal”?
Which makes me wonder what was the basis of your MDS diagnosis? did you have genetic mutations or presence of blasts to suggest MDS. Take a look at your bone marrow biopsy report to see why the report classified you has having MDS. You may be perfectly normal with a blood chemistry that just happens to out of the bell curve range that the medical statisticians consider “abnormal.”
Phil FalMay 16, 2018 at 12:11 am #36479
Reply #36478 was in repsonse to Tam post on April 29. I don’t see any link or connection to the original post. So, in the future I will make note of the original post at the start of my replys.May 16, 2018 at 12:25 am #36480
May 15, Sharon reply. Bone marrow biopsy procedure should not be painful. I was worried about it but very surprised when I had it done. No pain at all during or after the procedure. Assuming the bone marrow sample will be sent to qualified laboratory for analysis and suggestive diagnosis, it will be very informative for your Dr. and yourself. MDS is complicated with so many variations and classifications. But you should take time to research the findings from your personal copy of the report. Make several copies and get second opinion. but unlike my mistake, go to a Dr. thats not in the same area. Because they tend to agree with the original Doctors treatment recommendations. Like you, I am trying to stay away from drug treatments. At present, there doesn’t seem to be any “safe” MDS drugs. Most all can have potentially serious side effects. Curious. What was the diet you were on that kept your blood counts stable for a while? Wish you well. Phil FalMay 16, 2018 at 1:35 pm #36482dianaParticipant
Hope your BMB turns out ok!
It is very interesting. How did you bring up all your bloodwork number up through diet? not flagged low
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