Connect
How's your quality of life living with MDS?
This may be a broad question because MDS has different types of symptoms. (Can't think of the right word).
Anyways what I'd like to know is doctor told me the first time we met she confirmed I had MDS she said of all the cancers out there she would choose MDS for herself if she had to have one. She said normally since its very slow growing there is usually (and in my case) there is 7-8 yrs before anything will have to be done medically other than run blood tests regularly.
Has anyone else been told of several years before it gets bad. If so, what quality of life is the 7-8 years? I know weakness and getting tired is normal and I can handle that and hope thats all there is. But the last few days I feel like crap and my thoughts are its going to be a long 7-8 yrs. What experiences do you have?
Like
Helpful
HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Connect
@twitt1949 Hello. I was diagnosed with MDS del5q (low risk) in 2020, but looking back at blood results, it had probably been brewing for at least 3 years before that. I had no symptoms. My haemaglobin declined slowly over years...it would be stable for awhile, then do a bit of a drop. My energy levels decreased accordingly, but I was still working full time and feeling OK. Once Hb got to about 85 I was very tired and started getting breathlessness, chest tightness and mild nausea. I dropped down to half days at work at this point. In Aug 2024 I started needing red cell transfusions about once every 10 weeks. Apart from the shorter work days I still functioned pretty normally. If I wanted to go on a bushwalk or out for a big day, I'd plan it for earlier in the cycle. The transfusions themselves just meant the best part of a day in a chair. By Jan 2026 the transfusions were needed once every 4 weeks. I felt as though I was dragging myself around a lot of the time and exercise went out the window as I couldn't keep a routine. I started on lenalidomide at this stage. The side effects are a bit of a nuisance, but 6.5 years since diagnosis I am feeling "normal" again in terms of energy! I have found a bigger part of the adjustment to be psychological. I try to be thankful for each day, and not allow the illness to dominate the way I view myself. Wishing you all the best.
-
Like -
Helpful -
Hug
2 ReactionsMy husband was diagnosed with MDS over lapping Mylofibrosis symptom. He gets 2 units of blood at least once a week when his hemoglobin drops below 8. He feels weak and tired before the blood transfusion. His had bone marrow biopsy and his prognosis is not good. He can't be a good candidate for bone marrow transplant because he has prostate cancer with blast. They are saying he has 1 1/2 to 2 years to live, but we believe he can overcome this as he has a very positive attitude in life.
-
Like -
Helpful -
Hug
1 ReactionThanks for all the replys. What hard for me to get through my brain is for the last 77 yrs I have never been sick for very long. If I got hurt I'd heal up quicker than the average person and just been very healthy. Now this MDS its hard not to think every blood test will improve. Then when it don't keeps going down its very disappointing.
-
Like -
Helpful -
Hug
2 ReactionsYou are lucky to get blood transfusions when the hemoglobin drops below 8 .
My husband can't get blood until his hemoglobin is below 7 .
He gets his every 2 weeks until his hemoglobin rises one of these days .....
Right now , his wbc is very normal ; but platelets and hemoglobin are quite low .
He has stopped Vidaza after 20 cycles because it has suppressed his bone marrow too much .
Hope his hemoglobin will come back up again .
As long as blood transfusion is available , God is good !@donirankin
His recent BMB showed nothing has changed . Blast is 5 % like 3 years ago .
Google says his mutations SF3B1 and DNMT3A are actually good to be coexisting .
Hope he can be maintained at his current situation and we are happy .
-
Like -
Helpful -
Hug
1 Reaction@twitt1949
Oh yeah!
Hi @donirankin. Oh goodness, your husband is certainly undergoning a number of health issues with having prostrate cancer, myelofibros (MF) and MDS. That’s a lot going on…for both of you! I’m sure those nurses at the infusion center feel like family.
The fatigue when hemoglobin dips that low is so debilitating. I’m glad he feels better with the transfusions. I remember how that felt…an infusion of energy for a few days!
Is your husband having chemo for his prostate cancer or either of the blood cancers?
-
Like -
Helpful -
Hug
1 ReactionI guess I'm one of lucky ones. Other than a treatment for anemia early on and somewhat wimpy platletts I can't complain. I was diagnosed 3 yrs ago. I do have breast cancer but thanks to early diagnosis it is following the gameplan nicely.
-
Like -
Helpful -
Hug
2 ReactionsHi@loribmt. Yes, his going through a lot with (MF) and MDS plus, prostate cancer. His not doing chemo on his prostate anymore because his blood counts are way too low. I can see how weak he can be before his blood transfusions though. Right now, his receiving two units of blood every week. My concern is the future build up of iron that might affect his heart. His also getting some kind of chemo shots right now. I can't remember the name of the medication shot. You're right the nurses at the infusion center are all nice to us and that makes a big difference.
-
Like -
Helpful -
Hug
3 Reactions@nini09, I'm glad that the medication is working. Side effects of treatment that helps the disease, but not overall quality of life are challenging to deal with. You might find this related discussion helpful:
- Contolling Hydroxyurea fatigue by time of day you take the medication https://connect.mayoclinic.org/discussion/contolling-hydroxyurea-fatigue-by-time-of-day-you-take-the-medication/
How long have you been living with MDS?
@colleenyoung I think I've had it for 3-4 years only from symptoms. Weakness, thin skin, bleeding easy and bruising etc. I wasn't confirmed until about 6 months ago.
-
Like -
Helpful -
Hug
1 Reaction