Living with MDS (Myelodyplastic Syndromes)

Posted by momz @momz, Sep 4, 2023

I finally got my answer to what I have and trying to wrap my mind around it.
I am an ovarian cancer survivor of 20 years and have MDS for the last 7
Currently on watch and hate to even say wait!! What is the longest someone has had with no treatments? And what was the reason for treatment when it was needed?

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Lori, Volunteer Mentor | @loribmt | 2 hours ago

In reply to @shellyshelly "@loribmt , just diagnosed mds with excess blasts. After 6 weeks of tests and 5 blood..." + (show)

@shellyshelly Hi Shelly! I'm so happy to have you join Connect. You'll find you're not alone in this journey! So many of us have had a blood cancer that lead us to having a bone marrow transplant. I'm 7 years post transplant for AML which is, I guess, the ugly step sister to MDS. Now that you're experiencing excess blasts, your doctor is recommending treatment to get them under control first. Blasts are defective immature blood cells. These defective cells (leukemia cells) manage to bypass your immune system and are allowed to proliferate out of control. So the goal is to knock them down and stop them from taking over. Eventually these cells would crowd out all your healthy blood cells, leaving only cancer cells. Well you can imagine that's not a good thing! 😉
With MDS and AML there can be some cells that may elude the chemo, basically going dormant until they may reemerge later when they 'feel' the coast is clear. That is where the bone marrow transplant comes in as an important tool. Your old immune system is no longer recognizing the cancer cells. With the transplanting of stem cells from a donor, you will be getting an entirely new immune system. One that will again recognize cancer cells and snuff them out. At this time it is the only potential cure for MDS.

I won't sugar coat this. Your next several months will be a little rough! BUT, it is entirely worth the effort to rid your body of the cancer cells, have the transplant and then get one with your life! Your 2nd chance at life!! Had I not undergone all my chemo and then the transplant I'd be pushing up daisies from the underside 6 years already. But here I am! LOL. Leading the charge, along with what I love to refer to as my BMT Posse! We're here to help you along this health odyssey!

No question is too large or too small! What can I help you with?

bettymesler | @bettymesler | 23 hours ago

In reply to @shellyshelly "@loribmt , just diagnosed mds with excess blasts. After 6 weeks of tests and 5 blood..." + (show)

@shellyshelly My prayers are with you 🙏

shellyshelly | @shellyshelly | 1 day ago

In reply to @loribmt "Hello @momz @nbadry @rrivory @honeymae. I know that you’ve all been diagnosed with a blood condition..." + (show)

@loribmt

Hello @momz @nbadry @rrivory @honeymae. I know that you’ve all been diagnosed with a blood condition called MDS or myelodyplastic syndrome. Some of you are still in the ‘watch and wait’ period or a kinder term would be active surveillance, where you don’t require any treatment. But because the bone marrow isn’t functioning properly, you may already start feeling some of the symptoms of your bone marrow not turning out healthy blood cells. I thought it might be helpful to give you some articles to read which really help spell out the conditions of MDS in an attempt to answer some of your questions about why the wait for treatment and what treatments are available should you require them.
Because I’ve already had a very aggressive blood cancer (AML) and happy to say I’m now ‘fit as a fiddle’ and in a durable remission, I want to help you understand that even though your diagnosis can be scary, this doesn’t have to take over your life or define you going forward! @rrivory summed it up nicely, we can’t dwell on the “what ifs”…that just gives us too many opportunities for negative self talk.

So, the best attitude is to pick up where you are and face this head on. Knowledge is power so here are the articles I feel are good sources for your information.
https://www.healthline.com/health/cancer/mds-hematology
~~~~~
https://www.verywellhealth.com/what-are-myelodysplastic-syndromes-mds-2252548.
I really do appreciate how frighting it is to read through these articles and worry that your diseases may progress. @rrivory, is already having discussions of having a bone marrow transplant which will give her a completely new immune system…for a second chance at life. It works! I had one 4 years ago and now feel amazing, like nothing every happened. I was 65 at the time…now 69 and feeling incredibly healthy and fit. A friend I met at the same time I had my transplant at Mayo-Rochester had MDS! She is also doing fabulous…no more blood cancer!

@rrivory, there are quite a few of us in the forum who had a SCT using donor cells (allogenic transplant) and we’ll help you along your journey so keep me posted with updates, ok?

Jump to this post

@loribmt , just diagnosed mds with excess blasts. After 6 weeks of tests and 5 blood transfusions I was told Dr is referring me towards transplant list. They said no treatment means 6-8 months to live. I start chemo next week to help me along until the transplant process. Thank you for your words

nbadry | @nbadry | Jul 3 6:05am

In reply to @ruthshow1 "@nbadry Thank you! Your response means a lot to me. It helps to know someone who..." + (show)

@ruthshow1
Sorry, I should add, my haemaglobin stayed in the 90s for about 2 years, with very few symptoms. From what I understand of del5q, your haemaglobin levels are unlikely to make big, sudden drops. (It usually happens more slowly, in increments if this remains your only mutation.) You've got time to think about it and talk to the doctor more. You could just ask that, given that lenalidomide is cytotoxic, what are the benefits of starting it now rather than waiting until you have some symptoms?

nbadry | @nbadry | Jul 2 11:14pm

In reply to @ruthshow1 "@nbadry Thank you! Your response means a lot to me. It helps to know someone who..." + (show)

@ruthshow1
I didn't need anything for the platelets. I just had easy bruising and petechiae. For my neutrophils (which got to 0.4) I had a few months of injecting myself with Filgrastim every second day. I didn't have any symptoms and didn't have any infections at all, which I was really thankful for. It wasn't a big deal for me. In regards to transfusion got the transfusions, I got them each time my Hb got below 8, but I did not function well at this level. I got good at knowing and would head off for the bloodtest before it could drop any lower. Initially I needed them about every 10 weeks, and this interval gradually got shorter over the course of 18 months. To be eligible for lenalidomide I needed to have 8 units of blood within 6 months. It took me 18 months of transfusions to get to this point. As I mentioned, if I had made the choice myself, I would've started the drugs before I needed transfusions (maybe at 85 or 90). Lenalidomide usually works within a few months for people with MDS del5q.

ruthshow1 | @ruthshow1 | Jul 2 2:32pm

In reply to @nbadry "@ruthshow1 I'm doing amazingly well on the lenalidomide. My Hb has gone from 7 and needing..." + (show)

@nbadry
Thank you! Your response means a lot to me. It helps to know someone who has taken the medicine. How did they treat the neutrophils and platelets, and how did that side affect make you feel? Also, at what number did you start having transfusions? I'm mostly trying to figure out how soon I need to take the Lenalidomide. I'm staying steady between 10 and 11.

nbadry | @nbadry | Jul 1 11:14pm

In reply to @ruthshow1 "@nbadry I also was diagnosed with 5q deletion in 2023. I had my first doctor explain..." + (show)

@ruthshow1
I'm doing amazingly well on the lenalidomide. My Hb has gone from 7 and needing transfusions about once a month, to 13!! I feel fantastic 😁 I didn't really feel that I needed intervention until my Hb dipped to about 8.5 and everyday life started to become a struggle. If Id had a choice I would've started lenalidomide at this stage, however I had to wait to become eligible for free lenalidomide through our health system. I've been on it for 4.5 months and my only side effect now is constipation. (I take one Movicol sachet a day and all is well.) Earlier on I had a mild rash, which didn't need treatment, and a big crash in neutrophils and platelets which did need treatment. This has resolved. I dont know if starting the drug sooner would have been of medical benefit, but that's a question for the haematologist. I hope this helps and that if you start it that it works really well for you! Nicole

ruthshow1 | @ruthshow1 | Jul 1 7:57am

In reply to @nbadry "Hello. I was diagnosed with MDS (iso 5q deletion) 3 1/2 years years ago at age..." + (show)

@nbadry
I also was diagnosed with 5q deletion in 2023. I had my first doctor explain that I would not need treatment until my RBC count went below 10. That doctor left the practice and the new doctor is recommending Lenolidamide. My RBC was 10.3 two months ago and just last week it went back up to 11. I have not felt any difficult symptoms. I walk 2 miles and feel some shortness of breath on an incline. Otherwise, I am not fatigued to the point of needing naps or stopping activities. I am reluctant to go on the medication.
I am wondering how you are doing now and if you took the Lenolidamide and whether it helped you? I am 73 years old.

grandmatoni | @grandmatoni | Jun 25 5:56pm

In reply to @teresadodson123 "I was diagnosed with MDS with ringed sideroblasts 6 years ago. I’m 69. My father died..." + (show)

@teresadodson123 I'm sorry your insurance would not approved payment for Reblozyl. I was on Aranesp for about 5 years and my hemoglobin would run anywhere from 8.5 to 10.5 with fairly regular 3 week injections. About 5 years ago, my doctor told me about Reblozyl (Luspatercept). He said a doctor he attended medical school with was on the test panel for this medicine and he felt it would really help me. Fortunately, Medicare and my insurance approved payment (it is very expensive). Now my hemoglobin runs between 10.4 and 11.6, I get the injections when it is under 11.5. Also, I have no side effects. I realize everyone is different with different tolerances. I have never had to have transfusions, thank God. I'm 83 and I also have a lot of fatigue and occasional dizziness. I don't know what different insurance companies use to decide if certain meds are approved. I hope things get better for you. I am not a medical person. I just wanted to share my experience with you and hope you do not feel alone.

donirankin | @donirankin | Jun 24 11:43am

My husband is 65 years old and was diagnosed with MDS over lapping Mylofibrosis. His been feeling tired as his hbc would range from 6.0 to 8.2. He gets a blood transfusion every time hbc goes below 7. We just got the result of his bone marrow biopsy and the blast (leukemia) is now 15%. I just pray that he gets more energy during all of these process. Good luck to all of you who are in the same boat as his.

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