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Profile picture for Lori, Volunteer Mentor @loribmt

Good morning, @vng I know what it’s like to plunge into the world of blood cancer without a hint of knowledge about what to expect. Pretty alarming and can certainly leave a person feeling lonely and uncertain. Having gone through what my mom would call “baptism by fire” I learned a heckuva a lot about blood, blood cancers and bone marrow transplantation over the years. I find it fascinating.
It’s important we all have a lifeline! That’s one reason I’m here, along with all the other awesome members, like you, to join in with sharing experiences. Together, we’re one big supportive family (without the drama of Thanksgiving dinners LOL )

Taking a break from chemo can be a good therapeutic period where the body is allowed to recover. The Vidaza looks like it was doing a great job keeping your husband’s MDS in check. I’m sure it was a relief for both of you and your husband’s doctor to see some improvements on that BMB from 2 years ago! If several of the mutations are no longer detectable that means those cancer cells are gone! That’s awesome!
But what’s not cool is the lack of red blood cells. Chemo generally kills quickly dividing cells. Unfortunately, they don’t discriminate and will take out other quickly dividing cells such as the blood cells. The marrow can also slow down or not be as efficient. So that break from chemo may help the marrow recover allowing it to generate more healthy blood cells again. The EPO injections encourage the body to produce red blood cells, which should help nudge up your husband’s red blood supply a little faster. If not, like you said, a having a transfusion is a great boost…both in cells and energy!

How has your husband been feeling? I’m sure with lower red counts he’s a bit fatigued. But otherwise, how is he doing?

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Replies to "Good morning, @vng I know what it’s like to plunge into the world of blood cancer..."

@loribmt You are very comforting ! Thank you for being here on line .
My husband is doing well at age 83 . MDS showed up at age 80 . His hematologist / oncologist always tells us he is very tough and healthy among his patients .
He has a good appetite all the time and learns to drink lots of water to lush out the chemo toxins from his kidneys ... he has been a very good patient .
He is tired and naps a lot . He drives his cars when he feels good ( like during his 4th week of chemo cycle ) . Now that he is not on chemo anymore, I am sure a lot of these chemo side effects should be gone soon .
After 20 cycles of Vidaza , he deserves a break .
May be that's God's way of helping him .
He has never been on EPO ( Aranesp injections ) ; but anything should be better than having chemo . So , this is a good change .
3 years ago , he started with Reblozyl . It only worked for about 6 months for him .
Then switched to Vidaza ....worked for 20 cycles .
Both of us are fighters and will do anything to get better if possible .
We also have great hope and faith from our creator above .
Like I said , nothing has changed with his latest BMB and that's comforting . We hope it will stay this way . A few of previous noted mutations are gone too and that's welcoming .
Dr did mentioned RYTELO but we feel the side effects are too harsh just to raise up the hemoglobin count .
Much rather just stay on EPO injections . Hope you agree .
It is good talking to you . May God bless you richly .