I will pray for your recovery. I hope your WB counts improve dramatically. I had 2 donor lyphocyte infusions to spur WBC production. Last June mine tumbled to where relapse was questioned. Thank God the counts rebounded after 2 very stressful months. I go for a CBC tomorrow. 2 weeks ago my PLT fell 20 points. Hopefully it goes up. YET to go over 150 as the minimum range level of "normal" Doc seems to thin, "Ahh, good enuf" I just hope that $10, not $200, I pay him is good enough...hehehehe.
Stay strong, positive. Its not a sprint, but a marathon. Each day brings a scenario of its own. Rescue dog is good...I have a black female puggle. Dogs can be a good distraction and comfort. My regards to your son stationed in Germany! I am grateful for his service. Grateful not living in a war zone being bombed or shot at. Grateful for our protectors!\
Please take care!
God bless you!
As the article states "Treatment for myelodysplastic syndromes usually focuses on reducing or preventing complications of the disease and its treatments. In certain cases, myelodysplastic syndromes are treated with a bone marrow transplant."
Anyone diagnosed with MDS/MPN-RS-T? I’ve was diagnosed 5 years ago. There are only 7 patients at Memorial Sloan Kettering with this overlap disorder. Three of them are from Europe. I’m number 7. Stony Brook Medicine has no patients and the VA Hospital has none. I know this is an extremely rare blood cancer but there may be someone on this site who also has MDS/MPN-RS-T.
Anyone diagnosed with MDS/MPN-RS-T? I’ve was diagnosed 5 years ago. There are only 7 patients at Memorial Sloan Kettering with this overlap disorder. Three of them are from Europe. I’m number 7. Stony Brook Medicine has no patients and the VA Hospital has none. I know this is an extremely rare blood cancer but there may be someone on this site who also has MDS/MPN-RS-T.
I have MDS/MPN with SF3B1 and ET. It's basically the same as MDS/MPN RS T - I just don't have the 15% RS required for the diagnosis. My Oncologists are treating me as if I have MDS/MPN RS T.
I am taking 500mg of Hydroxyurea daily since April. My platelets seem to be climbing back up lately, so I'm not sure what will happen with treatment.
On top of all this, I have Osteoporosis and have just tested positive for an autoimmune disease!
All of this is so surreal - I feel like I'm watching a movie or something.
I’m saddened that you have been diagnosed with MDS/MPN-RS-T. I remember my original diagnosis at Sloan in Manhattan in 2018. Not a good day but I got over the initial shock of the cancer diagnosis. I’m currently taking two 500mg Hydrea tablets every day along with a 81mg aspirin and two 2.5mg Eliquis tablets every day. I have the JAK2, SF3B1 and SRSF2 gene mutations. The SRSF2 mutation is a splicing gene that shows up on the MDS side. My blasts are now 14. Lately my labs are awful. Way too many large red blood cells and way too many immature white blood cells. I’m having another BM Aspiration, molecular panel and a Koch procedure done on November 29th at Sloan. The Koch procedure looks for viruses and microorganisms in your bone marrow. First time I’ve ever had a Koch Procedure. Never heard of it until my Oncologist called and scheduled the BM Aspiration.
I hope you’re doing well and your symptoms are not getting to you. My major symptoms include fatigue and weakness in my legs. Nothing to complain about.
I’m saddened that you have been diagnosed with MDS/MPN-RS-T. I remember my original diagnosis at Sloan in Manhattan in 2018. Not a good day but I got over the initial shock of the cancer diagnosis. I’m currently taking two 500mg Hydrea tablets every day along with a 81mg aspirin and two 2.5mg Eliquis tablets every day. I have the JAK2, SF3B1 and SRSF2 gene mutations. The SRSF2 mutation is a splicing gene that shows up on the MDS side. My blasts are now 14. Lately my labs are awful. Way too many large red blood cells and way too many immature white blood cells. I’m having another BM Aspiration, molecular panel and a Koch procedure done on November 29th at Sloan. The Koch procedure looks for viruses and microorganisms in your bone marrow. First time I’ve ever had a Koch Procedure. Never heard of it until my Oncologist called and scheduled the BM Aspiration.
I hope you’re doing well and your symptoms are not getting to you. My major symptoms include fatigue and weakness in my legs. Nothing to complain about.
The Koch procedure looks for viruses and/or microorganisms in your blood. The results were negative. My bone marrow procedure confirmed my MDS/MPN-RS-T diagnosis. The molecular panel revealed another gene mutation- IDH1-R132H. Not a good one because this mutation has a poor prognosis and its a known onocogenic. In layman’s terms it turns healthily cells into cancer cells. This mutation is common in patients with AML. My Oncologist at Sloan ordered some additional labs to determine what is actually going on. So I wait - impatiently.
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Than you--I'll remember you in my prayers.
Anyone diagnosed with MDS/MPN-RS-T? I’ve was diagnosed 5 years ago. There are only 7 patients at Memorial Sloan Kettering with this overlap disorder. Three of them are from Europe. I’m number 7. Stony Brook Medicine has no patients and the VA Hospital has none. I know this is an extremely rare blood cancer but there may be someone on this site who also has MDS/MPN-RS-T.
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1 ReactionI have MDS/MPN with SF3B1 and ET. It's basically the same as MDS/MPN RS T - I just don't have the 15% RS required for the diagnosis. My Oncologists are treating me as if I have MDS/MPN RS T.
I am taking 500mg of Hydroxyurea daily since April. My platelets seem to be climbing back up lately, so I'm not sure what will happen with treatment.
On top of all this, I have Osteoporosis and have just tested positive for an autoimmune disease!
All of this is so surreal - I feel like I'm watching a movie or something.
Hope you are doing well!
Hi Bonnie,
I’m saddened that you have been diagnosed with MDS/MPN-RS-T. I remember my original diagnosis at Sloan in Manhattan in 2018. Not a good day but I got over the initial shock of the cancer diagnosis. I’m currently taking two 500mg Hydrea tablets every day along with a 81mg aspirin and two 2.5mg Eliquis tablets every day. I have the JAK2, SF3B1 and SRSF2 gene mutations. The SRSF2 mutation is a splicing gene that shows up on the MDS side. My blasts are now 14. Lately my labs are awful. Way too many large red blood cells and way too many immature white blood cells. I’m having another BM Aspiration, molecular panel and a Koch procedure done on November 29th at Sloan. The Koch procedure looks for viruses and microorganisms in your bone marrow. First time I’ve ever had a Koch Procedure. Never heard of it until my Oncologist called and scheduled the BM Aspiration.
I hope you’re doing well and your symptoms are not getting to you. My major symptoms include fatigue and weakness in my legs. Nothing to complain about.
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I'm so sorry I missed your comment!
I've never heard of a Koch procedure either. If you happen to see this, please let me know how it went and how you are doing!
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1 ReactionHi Bonnie,
The Koch procedure looks for viruses and/or microorganisms in your blood. The results were negative. My bone marrow procedure confirmed my MDS/MPN-RS-T diagnosis. The molecular panel revealed another gene mutation- IDH1-R132H. Not a good one because this mutation has a poor prognosis and its a known onocogenic. In layman’s terms it turns healthily cells into cancer cells. This mutation is common in patients with AML. My Oncologist at Sloan ordered some additional labs to determine what is actually going on. So I wait - impatiently.
-
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Helpful -
Hug
3 Reactions