@carolgk
Thank you, Carol. I'm doing much better with the Jakafi medication because my MF is due to a mutation of the JAK 2 gene. I still experience some itching, but it is under control now. My main issue now is the continued fatgue. I try to get things done in the morning and rest in the afternoon. How are you doing with the Vonjo medication?
@joaniech2004
Hello MF FRIENDS ! At this point I have secondary HIGH RISK MF AFTER HAVING PV FOR MANY YEARS!
I had brutal burning of skin for many years! A prescription called HYDRAXYZINE helped a great deal! Speaking with your doctors about this.
I was on JAKAFI for coupe of years ! It brought my blood numbers down to extremely low level!!
So keep an eye on that !
Now it’s difficult to bring my numbers back up to normal levels! I am on OJJAARA FOR THE LAST SIX MONTHS! Very slow progress. All the itching burning 🥵 stopped once my blood levels took a dive !
Wanted to share my experience in effort to help ,
I hope you all who have been affected by blood cancers , keep trying and keep educating yourself!
I feel bad for you all who had to endure grossly incompetent and careless doctors !
Blessings to all of you
Hanya
@carolgk
Thank you, Carol. I'm doing much better with the Jakafi medication because my MF is due to a mutation of the JAK 2 gene. I still experience some itching, but it is under control now. My main issue now is the continued fatgue. I try to get things done in the morning and rest in the afternoon. How are you doing with the Vonjo medication?
@joaniech2004
Good to hear you are much better and itching is under control.
Again, like you I tried to do things in the morning because after lunch I was in bed. The fatigue and breathless episodes made everything I did much more difficult. By afternoon I was in bed resting. Slept 10-14 hours a day, a lot for me.
I am doing great and consider Vonjo to be a miriacle drug. I've been on Vonjo for 7 weeks, feel better than I have in 3 years. I am active and do not feel exhausted all of the time.
First, my shortness of breath improved quite a bit, is gone now.
My spleen size went down, I can eat without discomfort.
The awful fatigue was slower to change but dramatically better in a month and gone by 6 weeks.
I have had only 3 night sweats in the last 4 weeks.
The Itching has improved a little, mostly the intensity but did have a glorious 5 day break,
Bone Pain is not as frequent but seems more intense.
Im so thankful to have this symptom improvement before my BMT. Hopefully that will occurr in May.
@joaniech2004
Hello MF FRIENDS ! At this point I have secondary HIGH RISK MF AFTER HAVING PV FOR MANY YEARS!
I had brutal burning of skin for many years! A prescription called HYDRAXYZINE helped a great deal! Speaking with your doctors about this.
I was on JAKAFI for coupe of years ! It brought my blood numbers down to extremely low level!!
So keep an eye on that !
Now it’s difficult to bring my numbers back up to normal levels! I am on OJJAARA FOR THE LAST SIX MONTHS! Very slow progress. All the itching burning 🥵 stopped once my blood levels took a dive !
Wanted to share my experience in effort to help ,
I hope you all who have been affected by blood cancers , keep trying and keep educating yourself!
I feel bad for you all who had to endure grossly incompetent and careless doctors !
Blessings to all of you
Hanya
@hanya
Thank you for sharing your experience with treatments. Are you seeing side effects with the Ojjaara? Is a bone marrow transplant and option for you?
@joaniech2004
Good to hear you are much better and itching is under control.
Again, like you I tried to do things in the morning because after lunch I was in bed. The fatigue and breathless episodes made everything I did much more difficult. By afternoon I was in bed resting. Slept 10-14 hours a day, a lot for me.
I am doing great and consider Vonjo to be a miriacle drug. I've been on Vonjo for 7 weeks, feel better than I have in 3 years. I am active and do not feel exhausted all of the time.
First, my shortness of breath improved quite a bit, is gone now.
My spleen size went down, I can eat without discomfort.
The awful fatigue was slower to change but dramatically better in a month and gone by 6 weeks.
I have had only 3 night sweats in the last 4 weeks.
The Itching has improved a little, mostly the intensity but did have a glorious 5 day break,
Bone Pain is not as frequent but seems more intense.
Im so thankful to have this symptom improvement before my BMT. Hopefully that will occurr in May.
@carolgk
I'm glad you are feeling a little better. How did you find a donor match for your upcoming BMT? Are you doing that at Mayo Clinic Arizona in Arizona?
@carolgk
I'm glad you are feeling a little better. How did you find a donor match for your upcoming BMT? Are you doing that at Mayo Clinic Arizona in Arizona?
@joaniech2004
I'm being treated at Mayo in Jacksonville, Florida.
After the results from the most recent Bone Marrow biopsy, my Oncologist ordered a blood test to do the HLA tissue matching. That sample was sent to a Bone Marrow Registry. The registry notified Mayo I had matches. This occurred last week. Samples were sent to Mayo.
I am fortunate that this happened so quickly.
@joaniech2004
I'm being treated at Mayo in Jacksonville, Florida.
After the results from the most recent Bone Marrow biopsy, my Oncologist ordered a blood test to do the HLA tissue matching. That sample was sent to a Bone Marrow Registry. The registry notified Mayo I had matches. This occurred last week. Samples were sent to Mayo.
I am fortunate that this happened so quickly.
@carolgk
That's really good news! My hematologist searched for a match last fall but didn't find one. We will try again. Fortunately, I'm not at the urgent phase.
@carolgk
That's really good news! My hematologist searched for a match last fall but didn't find one. We will try again. Fortunately, I'm not at the urgent phase.
@joaniech2004
Oh my. So sorry to hear you did not have a match last fall.
I believe a World wide Registry could be the next step if the US registry does not show a match on the next BM search, if a BMT is needed.
I hope you don't require a BMT and your symptoms can be managed.
@hanya
Thank you for sharing your experience with treatments. Are you seeing side effects with the Ojjaara? Is a bone marrow transplant and option for you?
@joaniech2004
Hi Joanne , I have been on OJJAARA FOR ABOUT SIX MONTHS, initially I was taking 200 mgs but it quickly made me very sick to my stomach, doctor decrease the dose to 150 mgs for couple of months. Felt much better my body was able to process this
Blood numbers did not improve so went back to 200 mgs of OJJAARA,
I was able to handle this with some nausea medication. I have been on it for last couple of months and no bad side effects 😇
I believe I am stable with this . Going for blood tests on April 7 /26 , actually excited to see my progress.
I have no other side effects!
Thanks for your question
Good luck ! Gods blessings
HANYA
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@joaniech2004
Hello MF FRIENDS ! At this point I have secondary HIGH RISK MF AFTER HAVING PV FOR MANY YEARS!
I had brutal burning of skin for many years! A prescription called HYDRAXYZINE helped a great deal! Speaking with your doctors about this.
I was on JAKAFI for coupe of years ! It brought my blood numbers down to extremely low level!!
So keep an eye on that !
Now it’s difficult to bring my numbers back up to normal levels! I am on OJJAARA FOR THE LAST SIX MONTHS! Very slow progress. All the itching burning 🥵 stopped once my blood levels took a dive !
Wanted to share my experience in effort to help ,
I hope you all who have been affected by blood cancers , keep trying and keep educating yourself!
I feel bad for you all who had to endure grossly incompetent and careless doctors !
Blessings to all of you
Hanya
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1 Reaction@joaniech2004
Good to hear you are much better and itching is under control.
Again, like you I tried to do things in the morning because after lunch I was in bed. The fatigue and breathless episodes made everything I did much more difficult. By afternoon I was in bed resting. Slept 10-14 hours a day, a lot for me.
I am doing great and consider Vonjo to be a miriacle drug. I've been on Vonjo for 7 weeks, feel better than I have in 3 years. I am active and do not feel exhausted all of the time.
First, my shortness of breath improved quite a bit, is gone now.
My spleen size went down, I can eat without discomfort.
The awful fatigue was slower to change but dramatically better in a month and gone by 6 weeks.
I have had only 3 night sweats in the last 4 weeks.
The Itching has improved a little, mostly the intensity but did have a glorious 5 day break,
Bone Pain is not as frequent but seems more intense.
Im so thankful to have this symptom improvement before my BMT. Hopefully that will occurr in May.
Best of luck to you. Take care
-
Like -
Helpful -
Hug
1 Reaction@hanya
Thank you for sharing your experience with treatments. Are you seeing side effects with the Ojjaara? Is a bone marrow transplant and option for you?
@carolgk
I'm glad you are feeling a little better. How did you find a donor match for your upcoming BMT? Are you doing that at Mayo Clinic Arizona in Arizona?
@joaniech2004
I'm being treated at Mayo in Jacksonville, Florida.
After the results from the most recent Bone Marrow biopsy, my Oncologist ordered a blood test to do the HLA tissue matching. That sample was sent to a Bone Marrow Registry. The registry notified Mayo I had matches. This occurred last week. Samples were sent to Mayo.
I am fortunate that this happened so quickly.
-
Like -
Helpful -
Hug
2 Reactions@carolgk
That's really good news! My hematologist searched for a match last fall but didn't find one. We will try again. Fortunately, I'm not at the urgent phase.
@joaniech2004
Oh my. So sorry to hear you did not have a match last fall.
I believe a World wide Registry could be the next step if the US registry does not show a match on the next BM search, if a BMT is needed.
I hope you don't require a BMT and your symptoms can be managed.
I'm any case, take care.
@joaniech2004
Hi Joanne , I have been on OJJAARA FOR ABOUT SIX MONTHS, initially I was taking 200 mgs but it quickly made me very sick to my stomach, doctor decrease the dose to 150 mgs for couple of months. Felt much better my body was able to process this
Blood numbers did not improve so went back to 200 mgs of OJJAARA,
I was able to handle this with some nausea medication. I have been on it for last couple of months and no bad side effects 😇
I believe I am stable with this . Going for blood tests on April 7 /26 , actually excited to see my progress.
I have no other side effects!
Thanks for your question
Good luck ! Gods blessings
HANYA