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.
Hi Lori,
I didn’t want to post this in the other chat, but my brother who had HL twice was diagnosed this past Monday (his birthday) with MDS.😢 We don’t know what kind or level yet. Waiting for the next appointment. From everything I’ve read, this is bad. He just turned 61 and was hoping to retire next year. I have a ton of questions but really need to wait until we know which blood cells aren’t forming correctly.
Hi Lori,
I didn’t want to post this in the other chat, but my brother who had HL twice was diagnosed this past Monday (his birthday) with MDS.😢 We don’t know what kind or level yet. Waiting for the next appointment. From everything I’ve read, this is bad. He just turned 61 and was hoping to retire next year. I have a ton of questions but really need to wait until we know which blood cells aren’t forming correctly.
Hi @raetp. Oh golly, this isn’t news anyone expected to see, especially your brother on his birthday! I remember that just talked about him having had HL a number of years ago with an autologous (own cells) stem cell transplant for treatment and he’d been doing so well. I’m so sorry to hear about this little setback for him.
As you mentioned there are different classifications and staging for MDS so we’ll wait until your brother knows more about his diagnosis. But try not to despair, there are treatments for MDS. The ultimate and only potential cure is a stem cell transplant using donor cells. It can be very successful. In fact, @katgob very recently had a transplant for MDS. I had one 5 years ago at the age of 65, for AML, MDS’s aggressive and nasty step sister. I’m super healthy and feel as though nothing ever happened.
So please encourage your brother and family to stay positive! We have a great support group with members who have MDS and we’re all here to offer encouragement and hope. Is he still being seen at Mayo-Rochester?
Hi @raetp. Oh golly, this isn’t news anyone expected to see, especially your brother on his birthday! I remember that just talked about him having had HL a number of years ago with an autologous (own cells) stem cell transplant for treatment and he’d been doing so well. I’m so sorry to hear about this little setback for him.
As you mentioned there are different classifications and staging for MDS so we’ll wait until your brother knows more about his diagnosis. But try not to despair, there are treatments for MDS. The ultimate and only potential cure is a stem cell transplant using donor cells. It can be very successful. In fact, @katgob very recently had a transplant for MDS. I had one 5 years ago at the age of 65, for AML, MDS’s aggressive and nasty step sister. I’m super healthy and feel as though nothing ever happened.
So please encourage your brother and family to stay positive! We have a great support group with members who have MDS and we’re all here to offer encouragement and hope. Is he still being seen at Mayo-Rochester?
Oh yes! He still goes to Mayo. He lives in a suburb of Mpls, so Mayo is where he goes for his annual checkups. He is open to a donor stem cell transplant if it comes to that. We are just waiting right now. I will pass on to him this other person’s success with it. There is only my brother, his wife, and our 92 year-old father now. We’re not telling dad yet as he’s on his decline now and don’t want to upset him. But the three of us will work through this. Thank you for you support. 😃
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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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Hug
1 ReactionHi Lori,
I didn’t want to post this in the other chat, but my brother who had HL twice was diagnosed this past Monday (his birthday) with MDS.😢 We don’t know what kind or level yet. Waiting for the next appointment. From everything I’ve read, this is bad. He just turned 61 and was hoping to retire next year. I have a ton of questions but really need to wait until we know which blood cells aren’t forming correctly.
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Helpful -
Hug
2 ReactionsHi @raetp. Oh golly, this isn’t news anyone expected to see, especially your brother on his birthday! I remember that just talked about him having had HL a number of years ago with an autologous (own cells) stem cell transplant for treatment and he’d been doing so well. I’m so sorry to hear about this little setback for him.
As you mentioned there are different classifications and staging for MDS so we’ll wait until your brother knows more about his diagnosis. But try not to despair, there are treatments for MDS. The ultimate and only potential cure is a stem cell transplant using donor cells. It can be very successful. In fact, @katgob very recently had a transplant for MDS. I had one 5 years ago at the age of 65, for AML, MDS’s aggressive and nasty step sister. I’m super healthy and feel as though nothing ever happened.
So please encourage your brother and family to stay positive! We have a great support group with members who have MDS and we’re all here to offer encouragement and hope. Is he still being seen at Mayo-Rochester?
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3 ReactionsOh yes! He still goes to Mayo. He lives in a suburb of Mpls, so Mayo is where he goes for his annual checkups. He is open to a donor stem cell transplant if it comes to that. We are just waiting right now. I will pass on to him this other person’s success with it. There is only my brother, his wife, and our 92 year-old father now. We’re not telling dad yet as he’s on his decline now and don’t want to upset him. But the three of us will work through this. Thank you for you support. 😃
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