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MDS (myelodysplastic syndrome): When to start treatment?
My husband has lower risk MDS (SF3B1 mutation) MPN RS T . He has had chronic anemia that has been monitored for over a couple years. He also has a strong history of heart disease; had 3 stents placed in his heart on 3/12/24. He will have a femoral endarterectomy /angioplasty on Dec. 13th to help clean out his blocked arteries. (This was postponed from 12/3).
Dave has great hematologists who have recommended he start shots mid-December, to help boost his RBC/Hgb. They feel this will also help with his other medical conditions. Drugs mentioned were Aranesp, or Darbepoetin. There are other options like epoetin, Epogen, Procrit, but these were not mentioned in his plan of treatment. Just trying to sort everything out.
Can anyone share personal experiences on these meds and if they helped you, had any side effects, etc. He is a little fearful of starting. He is worried about side effects reported on some of the meds (especially heart attack and stroke). He also wonders once he starts, will it lead to needing more and more? Will it advance his condition quicker? Should he stay on the wait and watch plan longer?? He has been tired for a couple years now, so he has learned to deal with that the best he can. He wonders though, is this better than other side effects, or complications that could arise?
We know he has to do something at some point. Hgb. was 9 on 10/24 and up to 10.1 at his highest over the last year, or more. The anxiety of the unknown is a big part of the fear he is facing. He was just diagnosed on 4/15 so lots to learn yet. Any shared experiences and thoughts are welcome. Thank you so much!
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I'm 79 male and burdened with 5 mutuated chromosome that manife s ted into MDS/AML having had blasts up to 26% and now is in REMISSION. Chemo is combination of vidaza and orally ventocolex since December 2023, currently in 11th cycle. Hgb is around 12.0 best since 2018....WBC and ANC normal range. Platelets vary have been as low as 5.
Everyone is different. My condition came out if no where after several years (since 2006) of what was described as "chronic fatigue syndrome " . The bet is my exposure to agent orange during my RVN tour in 69/70.
Wish I had answers for you. Best on your journey. Don't give up.
Thank you for your response and your service to our country! Happy things are looking up for you! Keep that going! We'll keep on keeping on too! That's the main thing. Positive attitudes can do so much! God bless!
I have a diagnosis of MDS/MPN- RARS-T. My platelets have been too high. When I began hydroxyurea to lower the platelets, it resulted in lowering my hemoglobin as well. I now take an injection of luspatercept ( fairly recently approved) every 3 weeks to raise my HGb, so that no transfusion is required. It works great. You might ask about it.
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2 ReactionsGood afternoon,
I am recently new to this support group as of today. I happened to see your post which caught my attention as I was searching the intranet to learn the same information. My husband has been diagnosed with MDS lineage dysplasia.
My husband looks and feels fine, but his platelet and hemoglobin levels are continuing on the downward trend.
We are scheduled for another bone marrow biopsy so his doctor can get a better understanding on how his cancer is advancing. I know our next visit we will be discussing treatment
My husband and I are in the same position as you were in December. Thank God, at this point my husband is feeling great and you would never know anything is the matter.
I understand everyone's journey is different, but I was wondering if you could share yours with me.
I appreciate anything you can share.
Sincerely,
shermac711shemac711
I'm glad your husband is feeling well and showing no signs of illness. My husband only had the one BMB. It was enough to determine and confirm his diagnosis. I'm sorry they need to do two for your husband.
You'll need to see what your Dr. recommends, but my guess as long as your husband is feeling great, they'll likely put him on a "watch and see" status. That means they'll continue to monitor blood levels, and how he's feeling.
My husband had three heart stents placed in 3/24. He also had vascular procedures to improve blood flow due to peripheral artery disease. He was tired all the time and his hematologist and vascular surgeon felt it would be best for him to start the shots. The hope is to help bring up his hemoglobin and oxygen levels, to help him feel better. His hgb was at 9.5 most of the time. It's come up to 10 at this point. He sees his hematologist tomorrow. We'll see that he says.
Hope this helps. Praying your husband continues to do well!
Good luck!
Gail
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2 ReactionsI started showing signs almost two years ago and was diagnosed over a year ago with MDS. My monthly bloodwork has been stable for the year. Therefore I am in the wait and see stage. I have fatigue but listen to my body and just live a slower way of life. The advice I was given was to quit worrying and enjoy life. Hard to do but it really has helped me cope with this disease. 74 and making the most of the situation.
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9 ReactionsGail, thank you so much for your reply. My husband was diagnosed with MDS with multilineage dysplasia approximately 1.5 years ago. We have been on the wait see status but as I mentioned I believe we are heading into a different chapter of our journey. What caught my attention to your post was regarding starting treatment.
My husband's WBC is 2.8, RBC is 4.8 Hemoglobin is 10.6. Since it looks as though he has started taking meds now, is he feeling better? I have a feeling our hematologist is going to recommend Reblozyl.
I believe my feelings are the same as yours regarding the meds and if they have helped any and the side effects that comes with them. And at what level is the danger zone on when you should actually start. Since your husband has started the meds is he feeling better? Has he had many side effects?
My heart aches every time I think of this journey.
I hope you hear uplifting news today and your husband is feeling better. And for yourself my love and prayers are with you.
Please let us stay in touch with one another sometimes I feel as though we are alone in this journey.
Sherri
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3 ReactionsDear Brenda,
It funny how sometimes somebody can say something to you as little as two words and it makes a major impact.
When my husband was first diagnosed our world fell apart. We laid in bed with each other crying, we started cleaning out our house and throwing our belongings away. At first, we stopped traveling and doing the things we loved.
I am a spiritual person, and it finally dawned on me. God grants us the grace of one day at a time and that is what we all receive. Every day I ask him do you feel good today and thank God it is always a yes. I give thanks and say alright then let us go live life.
Thank you for taking the time and sharing your journey with me. I appreciate it and please stay in touch with me.
Sincerely,
Sherri
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4 ReactionsSherri,
We are never alone on this journey, thanks to all on this site who are going through similar situations. That's helped us, especially me. I'm the caregiver to him and my elderly mom, so some days are harder than others. It's been nice though, as we are here to listen, share stories and support one another.
Dave is getting a shot of Arenesp, every three weeks. Other than he says it stings when they give it, he's had no symptoms, or adverse effects. His hgb has come up some. Staying around 10 for two-three months. His hematologist was okay with that, since bwe're only shooting for 11. Any higher than that, there can cause a stroke, or heart attack. We're gonna keep trying this route. He also told him to take an iron tablet every day, to see if this helps. He didn't think it will, but said it could, so it was worth a try.
We will see him again in 6 weeks to talk. There are other meds out there but insurance can deny until certain markers are met.
He doesn't have the energy and stamina he used to. He tires easily but doesn't feel sick, so we take that as a win for now.
We'll definitely keep in contact. Always good to have prayers shared between our loved ones and our families.
God Bless!
Gail
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2 ReactionsBrenda,
Best wishes to you. Hopefully you can enjoy each day to the fullest and hang in there. Praying you continue to stay well.
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