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Thalassemia Patients and Friends and thalpal Ā© A. Battaglia 2018





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Author Topic: Jaakafi  (Read 3928 times)
djema
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« on: February 09, 2017, 10:05:26 AM »

Hello friends and Andy .
In Russia, we offer the cure Jakavi.
What would You advise ? Many thalassemia patients are taking this medication ?
In Russia box Jakavi is red and firm Novartis produces Jakavi in blue color?Huh?Huh?? Undecided


 
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Andy Battaglia
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« Reply #1 on: February 09, 2017, 05:14:32 PM »

Jakavi is a JAK2 inhibitor that is available for some other conditions in the US, but phase 3 trials for use in thalassemia has just recently concluded. The drug reduces spleen size and a slight increase in pre-transfusion Hb was also noted during trials. The hopes are that this drug will be an alternative to splenectomy. This may be especially helpful to the many patients who experience regular periods of hemolysis, requiring more frequent transfusions.

Do you know people using the drug and what their results have been?
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Andy

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Hafiz Akhtar
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« Reply #2 on: February 14, 2017, 12:44:18 AM »

Andy, Is JAK2 only available in US or in some other countries also. can it be availed easily from Markets in US. thanks
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Andy Battaglia
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« Reply #3 on: February 14, 2017, 10:18:03 AM »

I know very little about this drug. It is approved for other conditions, but the report on the trials for thal was just submitted in December, 2016. I would like to know more about how it is being used and what the results have been, but I am still waiting for a reply from djema.
This is the link to the trial report. http://www.bloodjournal.org/content/128/22/852?sso-checked=true

What seems most important is that for the spleen size to shrink, ineffective erythropoiesis in the bone marrow would have to also be reduced. This is one of the two goals of transfusion, so that would have dramatic effects on the health of the patient taking this drug.
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Andy

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djema
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« Reply #4 on: March 11, 2017, 03:08:31 PM »

 :rolleyesFriends ,I apologize for the late response .
I will try to gather more information about Jakavi , my friends from Dagestan not long ago started to take this drug .
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djema
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« Reply #5 on: March 11, 2017, 03:13:57 PM »

Andy I sent You a private message , thought I wrote on the forum everyone.
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djema
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« Reply #6 on: November 17, 2017, 12:28:28 PM »

Hello, friends . my friends from Dagestan told me about Gakavi, they took Gakavi for six months, the children started to gain kilos, the need for transfusion became less. before transfusion was every week, now once a month. Gakavi expensive for the price, it began to give children who are preparing for a bone marrow transplant. all the Djakavis are not given. we'll also get Gakavi for Aysel, write how my daughter will feel when she drinks Giacavi.
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djema
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« Reply #7 on: February 05, 2018, 11:07:52 AM »

Hello, friends .
my daughter Aysel accepts jakavi ( ruxolitinib) medical treatment for a month, after jakavi she constantly wants to eat, a good appetite.
the face looks almost like a healthy child. Blood is also needed every month, and when it's sick for 2-3 weeks.
Six months after receiving jakavi, there will be bone marrow transplantation.
Let you all be well!
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Andy Battaglia
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« Reply #8 on: February 09, 2018, 03:37:49 PM »

Good to learn this. Ruxolitinib is currently in trials and has shown great value in reducing spleen size and improving pre-transfusion Hb level.
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Andy

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djema
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« Reply #9 on: July 31, 2018, 12:20:55 PM »

Hello, friends. 
Jakavi really reduced the size of my daughter's spleen , hemoglobin no longer drops to low numbers as before . Hemoglobin is better . My daughter on the spine were the centers of blood from the treatment of Jakavi tumor is not gone . we did 10 sessions of radiotherapy to go these centers and we continue to make Jakavi. The transplant will not be done until we have the foci of hematopoiesis .
It's okay !
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Andy Battaglia
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« Reply #10 on: July 31, 2018, 08:26:56 PM »

That's great to hear. I hope we see this soon available around the world.
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Andy

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djema
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« Reply #11 on: August 01, 2018, 12:14:21 PM »

That's great to hear. I hope we see this soon available around the world.
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