Good morning @shemac711shemac711! I got a visual on your comment about having a bad day…I’m sitting here thinking of how many times it was a real struggle to pull up those big girl panties over the past few years. Adulting is so hard anyway without trying to pull those panties up while on a roller coaster ride of medical drama, with emotions all over the place…oh for the days when we had little to worry about besides picking the right day to coincide with our Days of the Week underwear. ☺️
Thank you for your kind words this morning and I’m glad that I’ve been able to use my experiences to help other people over the hurdles of theirs. Never in a million years did I think I’d have a blood cancer. That was not on my bingo card of life! But quite frankly, only because of this cancer odyessy, I’ve had so many positive experiences, a huge educational opportunity, I’ve met amazing and brilliant people, made new friends that I’d never have met, experienced compassion from complete strangers, learned the power of prayer, developed a deep respect for my medical team, science and big pharma…the list goes on. It is an honor to be able to pay ‘it’ forward! All of that was worth pulling up those big girl panties! ☺️
If you’ve been reading through some of the discussions, you’ve probably discovered there are different subtypes of MDS. Mutations in specific genes make the variations between subtypes. Some are more likely to cause MDS to be considered high risk for progressing to AML. From my understanding, other subtypes, like your husband’s tend to be lower risk. But any form may have an impact on blood cell production. So in the case of your husband, his bone marrow isn’t keeping up with red cell production.
His doctor is suggesting Reblozyl to help restore his red blood count to avoid having transfusions. This is a different type of medication than Procrit and is recommended for his specific type of MDS. I’ve found a good article for you to read that compares the two meds. From what it appears, the med his doctor is prescribing would be the better alternative. I think the article might relieve your anxiety a little to read about the benefits.
https://www.goodrx.com/compare/reblozyl-vs-procrit
Certainly all medications come with potential side effects and by law the list of possible reactions have to be listed. But many people don’t experience any ill effects from the meds. Your husband may not have any noticible issues and the benefits of getting his blood count back to ‘normal’ would be worth trying the medication.
I found another member with a similar history as your husband who is also taking Reblozyl for their low risk MDS. I’d like to introduce you to @dabls6 who’s been on this treatment for a while. It might be helpful to read a couple of their comments. I have the links below.
> https://connect.mayoclinic.org/comment/1164875/
> https://connect.mayoclinic.org/comment/1080366/
It’s wonderful your husband hasn’t noticed any changes in his health over the past year and a half. His doctor, noticing a downward trend in your husband’s red cell count, is wanting to keep that from going any lower. If it does go lower he may tire more easily or feel shortnesss of breath after exertion. The medication will help by specifically targeting and blocking molecules that prevent red blood cells from maturing, allowing them to mature properly for a healthy red blood supply.
That’s a lot of information to chew on this morning but I really hope it’s helpful. I’m here any time you need a sounding board. Sending a hug to you and your husband! How long have you been married?
Thank you so much for your response. Your kind words and guidance are so appreciated. I reached out to dabls6 to see if they wouldn't mind sharing their journey with me.
This is not usually like me at all, I myself am a very spiritual person and would not make it through the day without my faith. I know every day that we have each other is a gift and never to be taken for granted.
I'm getting a little ahead of myself and not taking one day at a time. As soon as we revisit the doctor and receive the results, I will have a better understanding hopefully as our next steps.
My husband and I have been married for 39 years this coming April.
I thank you so much for all of kind informative posts and your responses. You have a very special gift and thank you for paying it forward. My big girl panties are on now.
Sincerely,
Sherri