Living with MDS (Myelodyplastic Syndromes)

@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?

@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.

@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.

@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

@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.

@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.

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.

I was diagnosed with MDS with ringed sideroblasts 6 years ago. I’m 69. My father died from MDS 30 years ago so there’s an unusual inheritance component to my disease. The only treatments available to my dad were transfusions-no drugs on the market at that time. I was monitored the first 2 years, then started EPO injections every couple of weeks. I have since been placed on Aranesp injections every 3 weeks. My hemoglobin averages about 8.5 every 3 weeks and low neutrophils sometimes. Like everyone else, I have much fatigue and the occasional dizziness and brain fog. But I fight nausea and vomiting the entire week after the injections. I have anti nausea meds but I experience side effects from them also. I took a 3 month break from treatment over the holidays. Surprisingly, my hgb counts stayed about the same. A blood transfusion was so much easier on me. I was thinking about talking to my oncologist about stopping treatment again but continue lab work once every month to monitor my blood counts. My insurance denied payment for the drug Reblozyl. Does anyone know if Medicare forces patients to be on a drug routine before they will approve a blood transfusion? I don’t feel the little benefit I get from Aranesp injections is worth being sick a couple weeks every month.

Hi Barbara @barbeeh51 Each of us has a unique chemistry so ‘one size does not fit all’ when it comes to treatments for blood cancers.
Your husband has been diagnosed with Myelodyplastic syndromes (MDS). This is a group of disorders caused by blood cells that are poorly formed or don't work properly. There are different subtypes of MDS allowing for some people to be in active surveillance as opposed to having to begin treatment immediately. We have members with all types and stages of MDS so what you read in Connect will vary with each member.

Symptoms of being tired and having nose bleeds can go hand in hand with conditions like MDS. But if your husband is in a low risk group and his MDS isn’t aggressive, then his doctor may elect to do nothing for now. Treatments can also come with side effects so it’s a risk vs reward scenario sometimes.
As long as your husband is having regular monthly blood work, his doctors will be able to look for trends in his labs. If they see indications that there is a need for medications then they can always start treatment. But for now, it sounds like your husband is pretty healthy and avoiding illnesses. So that’s very positive. With his RBCs low, causing the anemia that can certainly account for some of his fatigue. If his nosebleeds become more pronounced he should mention those to his doctor. Just to make sure his platelet level is in the normal range.

My husband of 80 was just diagnosed with MDA. He would not know that he had it if it were not for the low WBC and RBC numbers and low iron. He has symptoms of being tired and some nose bleeds. His oncologist is giving him a "wait a see treatment". He rarely gets sick and has never had COVID. I'm wondering if this is the best option for him, reading that others are on medications.
He will have blood tests done once a month to monitor changes. I just want to make sure we are doing what we can and not being passive. He also has chronic kidney disease.
Thanks
Barbara