Good luck! Three years ago at age 66, I was diagnosed with a few months left, but Jakafi kept me alive long to get a bone marrow stem cell transplant from my brother. Completed my treatment and banged the gong two weeks ago! It can be done!
@Dan Bernstein Sir how's the life after the transplant. Can you pls share details how's your life now, how many months did it take to fully recover...my father is having the same disease. And we are waiting to get our transplantation date fixed..
@@harikrishnanrajamohan6578 The best of luck to your father. I had everything going for me, from a 10 out of 10 genetic matched marrow donation from my brother to one of the best hospitals in the country, but it has stil been incredibly difficult battle. Months of awful chemo, weeks of radiation, and then you go into the hospital for more intense chemo and radition. With chemo, your stomach doesnt work and reach a level of exhaustion you never felt before. When they take you off the Jakafi in preparation for the transplant, you literally start to die. At least I did. And thats just the warmup. You have to really need a very strong lifeforce, patience, and most of all, a very very strong tolerance for physical pain, because every part of your body will be screaming in pain. In other words, thus is not for the faint hearted or the weak. If my brother was not the perfect match, and it was 50/50 gentically, I might have allowed myself to pass peacefully. No easy answers. All the best, Dan
I’m struggling with my oncologist to find a drug to reduce my platelets. I had been on a very high dose of hydroxoria for 10 years 2,500mg and platelets still hovering around 1000… tried anagralide with hydrox and still not helping reduce platelets. I am now on Jakafi 40mg/Hydrox 500mg… It feels like a total guessing game as my spleen and liver are affected adversely. Trying to find alternative treatments and have drastically altered diet to Whole Foods and limited sugar. I am open to suggestions ❤
Thank to so much for sharing your story, I too have been through the same journey as you and for about the same amount of time. I’m in the UK and being treated at the Bristol BRI Hospital, I had a bone marrow transplant in 2019, and ‘be your own advocate’ is no better advice.❤️
Good luck! Three years ago at age 66, I was diagnosed with a few months left, but Jakafi kept me alive long to get a bone marrow stem cell transplant from my brother. Completed my treatment and banged the gong two weeks ago! It can be done!
@danbernstein4694 This is a wonderful story! So glad for you. If you ever want to share more, please send me a note at stephanie@thepatientstory.com
@Dan Bernstein Sir how's the life after the transplant. Can you pls share details how's your life now, how many months did it take to fully recover...my father is having the same disease. And we are waiting to get our transplantation date fixed..
@@harikrishnanrajamohan6578 The best of luck to your father. I had everything going for me, from a 10 out of 10 genetic matched marrow donation from my brother to one of the best hospitals in the country, but it has stil been incredibly difficult battle. Months of awful chemo, weeks of radiation, and then you go into the hospital for more intense chemo and radition. With chemo, your stomach doesnt work and reach a level of exhaustion you never felt before. When they take you off the Jakafi in preparation for the transplant, you literally start to die. At least I did. And thats just the warmup. You have to really need a very strong lifeforce, patience, and most of all, a very very strong tolerance for physical pain, because every part of your body will be screaming in pain.
In other words, thus is not for the faint hearted or the weak. If my brother was not the perfect match, and it was 50/50 gentically, I might have allowed myself to pass peacefully. No easy answers. All the best, Dan
Nice! High 5
I’m struggling with my oncologist to find a drug to reduce my platelets. I had been on a very high dose of hydroxoria for 10 years 2,500mg and platelets still hovering around 1000… tried anagralide with hydrox and still not helping reduce platelets. I am now on Jakafi 40mg/Hydrox 500mg…
It feels like a total guessing game as my spleen and liver are affected adversely.
Trying to find alternative treatments and have drastically altered diet to Whole Foods and limited sugar. I am open to suggestions ❤
I was just diagnosed and I am scared to death. Thank you for this video. I am waiting to speak to my doctor now.
Hang in there you got this ❤ loving care of self and positive attitude 🤙🏼
Hi on treatment ruxolitinib gain alot weightis this normal
I did also. I try to cut back on carbs. I was advised to eat really good quality foods.
@@Chipper6032me too, a very effective drug
Thank to so much for sharing your story, I too have been through the same journey as you and for about the same amount of time. I’m in the UK and being treated at the Bristol BRI Hospital, I had a bone marrow transplant in 2019, and ‘be your own advocate’ is no better advice.❤️