Low risk MDS patients who opt for no medical/drug treatments

[tam]

Reply to Phil (#36478). My 2013 BMB showed 0.2% blasts with normal chromosomes. In 1991 my counts were as follows: platelets 134, rbc 3.9, wbc 4.0 and hemaglobin 12.8. At my last test my counts were platelets 120, rbc 4.0, wbc 3.6, and hemoglobin 13.4. So you can see I haven’t changed much over the last 27 years. I am much more focused on my diet than I was back in the 90’s. According to my MDS specialist I have low risk unclassified. I am very fortunate it has stayed stable over the years. Thanks for asking.

[katie hall]

Hi Tam – very late response to the thread but I found it during some internet searching!

I just want to say how reassuring it is to see there is someone out there who (probably) has had MDS for years and luckily it has not progressed in a serious manner.

I am 27 years old diagnosed with MDS RMCD back in 2011 (I think) and have been in watch and wait ever since with no treatment, there really seems to be a lack of young people with MDS that didn’t progress very quickly to AML. My counts are nearly all just below normal, with my neutrophils the worst (last count was 0.8 but usually they’re around 1.4 – 1.7). I do suffer from tiredness but its hard to tell if I am just tired from adulthood or actually am more tired than other people (ha), I do stay active but struggle with both strength and cardiovascular compared to all of my peers!

Anyway, to think that you *may* have had this for 27 years (I was born in 1991!) is helping me a lot, as I was 20 years old when I was diagnosed my coping strategy was straight up ignore it and tell everyone I am fine 🙂 as I am getting older I am getting concerns about how long this ‘watch and wait’ may or may not last. My hopes is my body has made do with it’s rubbish bone marrow production line and I will stay watch and wait until I am into retirement!!

[Philip Fallacaro]

From phil Fal re: low risk MDs classified a year ago from bone marrow biopsy. Just had results of recent bone marrow biopsy and not much has changed. IPSS SCORE NOW 1.37 vrs. Last year 1.32
Some blasts (2%)but considered normal. No new mutations from 20q delition and a few others considered associated with AML progression. WBC 3.7 low, RBC low 3.8 Hgb 11.8 low and have not varied too much in this low range over last year. I don’t feel as good as I did 5 years ago before my counts began to decline. But I’m 79 years old and just feel weaker and less motivated to do things I once did. The two Drs. I saw are suggesting VIDAZA TREATMENT. BUT I VIEW IT AS A DANGEROUS CANCER DRUG FOR MY LOW RISK CONDITION AND INDIDT ON WATCH AND WAIT WITH MONTHLY BLOOD MONETERING. IM hoping new safer drugs will be coming out, like Luspatercept, which should be approved by FDA next year based on successful clinical trials positive responses in low risk MDS patients. Being treated with any drug carries it’s risks and side affects. I’m hoping my body has been adjusting to my bone marrow defects and can maintain a viable level of cellularity
Enabling me to retain a reasonable healthy state. Sooner or later new and safer treatments for MDS will be developed(there is big money in it for Pharma companies and doctors who will administer them). I hope we will be around to be “cured” or benefited from these future drugs. In meantime live a healthy lifestyle with exercise, good diet and “clean living”….no alcohol , tobacco or narcotics. Not sure of any benefits of supplements or canabis derivatives— more research needed.

[tam]

Good luck Katie. I’m happy that you found my post and it offers you hope. I believe maintaining a healthy diet, exercise, and an active lifestyle is the best way to keep your immune system strong and energy level high. I have a couple posts that go into how I maintain a healthy diet and active lifestyle, in case you are interested. Easiest way to find them is to type “quinoa” in the Forum search box on the right. I realize my diet would be considered extreme to most and there is no way to prove it is working, but I feel really good for a 65 year old with low counts. Maybe there are parts of it that you can incorporate in your life. Hope this helps you and stay positive.

TAM

[Carol Morton]

Dear TAM: I’m writing on behalf of my wife Carol. She was diagnosed with MDS, “low risk,” in April of 2018. We were impressed by your diet and exercise regime and with the fact that you’ve been able to hold this at bay for 5+ years. I know you make no claims for the relationship between your diet, exercise and your present state of health but its impressive and we are anxious to do what we can to maintain Carol’s health. We’ve downloaded your entry under, “salmon,” and think the diet you’ve adopted makes perfect sense. We intend to incorporate it into our life. My wife was a professional ballet dancer and 10 years ago began what turned out to be three hip surgeries. Two replacements and one revision. Carol’s hematologist thinks the MDS may have been as the result of leaving a metal on metal prosthesis in for nearly 5 years prior to the revision. The metal on metal prosthesis shed chromium and cobalt into Carol’s blood stream. By the time of the revision, Carol’s chromium and cobalt levels were fairly high (they should be zero). Fortunately, they dropped significantly following the surgery but, as mentioned, may have been the catalyst for the MDS. Regardless, this is where we are. My wife just turned 74 and maintains a fairly active acupuncture practice. She is 5’6″ and weighs 130 pounds, a loss of 5 pounds since the diagnosis. Carol is quite anemic and in October of 2018 began Procrit to raise her hemoglobin levels. The first two Procrit shots (given a week apart) lasted for three months. Her second series lasted just one month and now she has had her third series. Her hemoglobin was 9.5 prior to the latest injections. We are waiting for the results of a blood test she took today. We worry greatly about the trajectory of this illness and if the Procrit can keep Carol from needing transfusions. Thank you for sharing your diet and exercise practices. We would greatly appreciate your sharing whatever you might be comfortable sharing and being able to touch base with you from time to time. Thank you. Carol & Monte Morton

[Chris Ballmer]

RAR –

Quoting you below… Have you had a SCT? When you say MDS free what does that mean exactly? I’m looking for a donor with City of Hope/Be the Match, but still intermediate risk but with blasts actually increasing slowly, just starting Vidaza, so prolly buying some time?

chris

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.

Ray

[tam]

Carol and Monte: Hope your test results show improvement. Great to hear that you found value from my diet and exercise routine. I am more than happy to answer any questions you have in the future. Thanks for writing and good luck.
TAM

[Somenath Mitra]

I have a couple of cases on complete remission after failed chemotherapy ( Jakavi & Thalix ) Weekly Blood Transfusions to Blood Transfusion Free over 2 years now in one case. Blood Transfusion Free for over 6 months in another case. Very Interesting Cases 😊

[bobby pellegrini]

Somenath – Can you post more details on those 2 cases particularly protocols used to maintain BTF.

[Margaret Bederaux-Cayne]

My Hubby was diagnosed, January this year, but low counts for 3 previous years – doctors didn’t know why – some unknown auto-immune disorder… Intermediate 1, low risk, but with all his counts low, only 3 % blasts, at that time. His White cell count has moved int the normal range, but he needs blood transfusions every 2 weeks & his platelets are extremely low. He started using the high doses of Curcumin & the Oncologist was surprised that his Ferritin level had gone from 1998 a month ago, to 1772. We are sure it is due to the Curcumin & he is looking at increasing it slowly to see what happens for the next test. He, of course, is in a “Wait & See”, with no medication for him. We use Essiac Tea, wheat grass shots, beet juice with garlic, many millions probiotic & other vitamin supplements, too. I have been getting him vitamins with no iron in them & stopped giving him vitamin C, as it carries iron. Also, he takes 1,000 calcium & 8,000 D3, at night, as they hinder iron. I am looking at getting him the Papaya Leaf Tea/extract, that someone on another board mentioned to increase his platelet levels – hoping it will work. He does not bleed – when they remove the needle from the transfusion or for blood sample, in a minute, you cannot see where the spot the needle was inserted.He has not lost any weight & his appetite is excellent.
Wondering what people do for fatigue. He is so very exhausted all the time & cannot do very much. He has not been able to work at his business & is very frustrated. It involves going up & down ladders & he works mostly alone – it is his own business. Also, he wears a mask & gloves whenever we go out & a mask & gloves for anyone who comes to our home. He is so very scared of picking up any colds, etc & avoids family gatherings, etc. Does anyone else do this??? I would like him to participate more, but he’s afraid of getting sick & not being able to fight it off. Thanks for sharing info.

[Kathy Stermer]

Margaret, I am in the intermediate category and get blood about every 2 weeks if my hgb falls below 7. Not sure what your husbands hgb runs but if he’s getting blood every few weeks this is the cause of his fatigue most likely. He’s being smart with the mask and I always carry one with me if out, always ask if I’m going somewhere if anybody sick and try to practice good hand washing always. One can’t be too careful. What dose of curcumin is he taking? My level over 1600 and am taking exjade (just started) but would prefer a more natural route. My only advice with fatigue is, listen to your body and do what you can. Best of luck to all trying to manage this disease as there’s no two alike in disease or treatment. So frustrating!!

[bobby pellegrini]

Margaret what tumeric/curcumin daily total dose mgs & frequency is he taking? Consider supplementing quercetin to work with curcumin to help it absorb and also extracts iron.

[Margaret Bederaux-Cayne]

Kathy & bobby:
After my Hubby’s blood transfusion last Friday, his Hemoglobin today, Wednesday, came up to 92.0 g/l (from 79.0 last Wednesday), Hematocrit up to 0.28 L/L (from 0.24) RBC count up to 2.8 x10*12L (from 0.24), WBC 5.0 normal, Platelet count 38.0 low. Out of 27 tests, he had 17 abnormal…
On one of the other threads on this message board, I read about a few people using large doses of Curcumin – @ 3000 mg – to reduce the ferritin levels, from extremely high counts. Checking back today, his ferritin level on Aug 7th was 1998 count & actually, on September 26th, after having 2400 mg of the curcumin for @ 1 week, it had dropped to 1766 count. I, also, stopped getting vitamin supplements with iron & no added vitamin C (carries iron) for him, we use a lot of chicken, instead of beef (maybe 2 x a week). 33 mg of Calcium – with Magnesium, at night – blocks iron. Now he has been using the curcumin regularly 1200 mg 2x per day & I just called the doctor to see if they will do another ferritin level next Wed. – it takes @ 2 weeks here to get that test back. The approval for him to get the Exjade just came in & we have put it on hold, until we see if the Curcumin has reduced his levels more…. Info says, if you are susceptible to kidney stones, the curcumin can cause them, but taking the Exjade, there are many other unpleasant side effects that I have read about.
I know if you use Turmeric in cooking & to make that wonderful “Golden Milk” – I drink it before bed, if I think I won’t have a good sleep – warm milk (I do use 2% – not recommended on the recipe…), with turmeric, black pepper (helps the turmeric work), I add cinnamon & if cooled down, can add honey (heat destroys the good things in the honey).
bobby, thanks for the info about the quercitin, because I know Turmeric & pepper(s) work together, so, didn’t know how to do that with the Curcumin capsules.
Now, from another thread on this message board, I have been trying to come up with Papaya Leaf Tea/extract, from around where I live, as a few people have said it can raise your Platelet levels – which he needs… I know I can get it on Amazon, but would like to find someone close to home – we live in Windsor, Ontario, Canada, right across the river from Detroit, Michigan – I am going to see if my Daughter can come up with a supplier in that area – she lives just outside of Detroit.
This message board is great – so helpful!

[Clement Rose]

I have MDS. They want to start me on Decitabine, like right now. The treatment is supposed to kill all the cancer cells in my blood. But they skim over the fact that it kills all the blood and platelet cells, with the hope my body will regenerate new healthy cells. I don’t follow the logic. I would think the correct method would be to try to increase all the counts first. My RBC and HGB is slightly below REF.RANGE. mY wbc COUNT IS 1.1 AND PLATELETS AT 18, which are very low. t just seems I’m being rushed into something against my better instincts. What kind of recovery rate is reached with this method on an 85 year old male? Reading all the posts to see the responses.

[Clement Rose]

I have MDS. They want to start me on Decitabine, like right now. The treatment is supposed to kill all the cancer cells in my blood. But they skim over the fact that it kills all the blood and platelet cells, with the hope my body will regenerate new healthy cells. I don’t follow the logic. I would think the correct method would be to try to increase all the counts first. My RBC and HGB is slightly below REF.RANGE. mY wbc COUNT IS 1.1 AND PLATELETS AT 18, which are very low. t just seems I’m being rushed into something against my better instincts. What kind of recovery rate is reached with this method on an 85 year old male? Reading all the posts to see the responses.

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