Happy Birthday to you too, @janetlen. We’re both Classy Chassis, eh? 😉 Not sure I’m in pristine conditons though… there’s a few dings, dents and in need of some detail work. But I did have a complete fluid change. 😂
There’s no indication that I had MDS before developing AML. I’d had my physical in July of 2018 and blood panel was perfectly fine…no indication of anything amiss. (I’ve looked back in records just to make sure, now that I know what I’m looking for).
Sometime after that, by autumn 2018 something misfired. I had acquired 3 mutations that set the ball rolling. My local and Mayo oncologists have all said that this was random and I may never know what ‘event’ if any, precipitated these mutations. I didn’t even have symptoms until 3 weeks before it was almost too late…which started 1 day after my 65th b-day…happy bday to me, huh?
Did you have next generation sequencing done? It can be helpful in evaluating the potential risk for advancing MDS to AML.
If both genetic mutations are in the low risk group, that’s really good news. Your doctor will then just monitor for changes…if any. With your latest bloodwork and biopsy not raising any eyebrows I’d say you’re in a good place right now. Celebrate that birthday! ☺️
I was having increasingly high monocytes and then my platletts were low so my oncologist (I was being seen for breast cancer) sent me to have a bone marrow biopsy. I had two mutations and the diagnosis was MDS. We were doing a "wait and see" approach and then my RBCs got low so I had one treatment of Reblozyl. After that my RBCs came up and we are wait and see again. I'm having my labs done every couple of weeks as well as IVIg every 3 weeks. (I have neuropathy caused by Sjogren's) so I see my dr alot. I have a very busy calender.
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Yes, we have classy chassis made so much better by our dings and dents!😉
Very close call for you. I can't imagine the whirlwind you must have experienced.
I had the next gene sequencing. Both of the mutations I have are considered low risk.
If both genetic mutations are in the low risk group, that’s really good news. Your doctor will then just monitor for changes…if any. With your latest bloodwork and biopsy not raising any eyebrows I’d say you’re in a good place right now. Celebrate that birthday! ☺️
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1 ReactionI was having increasingly high monocytes and then my platletts were low so my oncologist (I was being seen for breast cancer) sent me to have a bone marrow biopsy. I had two mutations and the diagnosis was MDS. We were doing a "wait and see" approach and then my RBCs got low so I had one treatment of Reblozyl. After that my RBCs came up and we are wait and see again. I'm having my labs done every couple of weeks as well as IVIg every 3 weeks. (I have neuropathy caused by Sjogren's) so I see my dr alot. I have a very busy calender.
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