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Mayo Clinic Connect brings together 2 women with leukemia, 46 years apart Oct 12, 2023 | By Nicole Ferrara (@nicoleferrara)Comment receiving replies
Hi @Loribmp,
Thanks so much for checking on us. So Jon had his transfusion 2 weeks ago today and is feeling better from it. He goes back to the hematologist on Thursday and he wants him to take Revlimid. I’ve read both good and bad reviews on it so hopefully Jon will make out ok with it. He also has to take a baby aspirin daily while on it for the possible blood clots. I’ve heard it can lead to leukemia also. We’ll have to ask the doctor about that. Thank you for all the links you included in your first note. They were very helpful. Hope you’re feeling well.
Best, @kathy115
Replies to "Hi @Loribmp, Thanks so much for checking on us. So Jon had his transfusion 2 weeks..."
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Hi @kathy115 it’s encouraging to hear your husband is feeling much better after the transfusion. I can relate to that! It’s like getting supercharged; provided with the wonderful return of some energy!
But that’s not sustainable long term so there enters the possibility of medications or as you mentioned, maybe a stem cell transplant. I totally understand the apprehension of taking medications where the warnings on the labels look so alarming. The only thing in my medicine cabinet were Vit D3 pills, so when I was diagnosed with AML, I thought it was bad enough with all the chemo, antibiotics and antivirals I had to take. The stem cell transplant brings on an entirely new gift of medications!
I had to do a serious paradigm shift in my attitude about taking meds because they became my lifeline and a means to buy me more time. “Better living through chemistry!” I’m alive today because of the much maligned Big Pharma, so I have a deeper appreciation for what these meds with the black box warning can do for us when our bodies aren’t able to fight a disease on their own anymore.
I know this is all so new to both of you and it takes time to accept the life change that come with your husband’s diagnosis of MDS. It can be manageable and will allow him to have a pretty normal life. It’s all encompassing right now, always hovering in the background of your thoughts. But I hope as he learns more from his doctor and possibly starts a medication to slow the progress he’ll feel a little more like himself. My biggest suggestion is to not focus on ‘what ifs’ such as ‘this could turn into leukemia’. If something changes, then it will be dealt with. It may never happen. So to worry about things over which there is no control is a thief of precious time and energy. ☺️
We have a number of members taking Revlimid and I’m thinking you might find some value in this discussion:
Is anyone here talking Revlimid for chemo…
https://connect.mayoclinic.org/discussion/is-anyone-here-talking-revlimid-for-chemo-if-so-please-share-with-me/
Let’s hope he gets good news with his doctor’s appt on Thursday. Let me know, ok? 🙂