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MDS (myelodysplastic syndrome): When to start treatment?
Blood Cancers & Disorders | Last Active: 12 hours ago | Replies (40)Comment receiving replies
Gail, 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
Replies to "Gail, thank you so much for your reply. My husband was diagnosed with MDS with multilineage..."
My husband was diagnosed with MDS 6 months ago. He has had 2 rounds of chemo treatment. His oncologist wants his platelet counts at 20 or above. R has blood drawn every M,W,F and every time he has needed platelet transfusions and sometimes red blood transfusions. R is tired most of the time but he has been advised not to take iron supplements. He had a stem cell transplant 5 years ago when he had myeloma. He is 78. Is there any natural way to increase his platelet levels and get his bone marrow working again?
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Sherri,
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