On to Vonjo: My wife was diagnosed with ET in the... - MPN Voice

MPN Voice

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On to Vonjo

Pte82 profile image
11 Replies

My wife was diagnosed with ET in the early 90's and started on Hydrea then moved to Anagrelide. Then it progressed to MF and she was on Jakafi and then Inrebic which stopped because of very low platelets and hemoglobin. Then she started courses of weekly infusions of Azacitidin along with two weeks of Venetoclax. She completed six courses and now she is on Vonjo. After being on it a week platelets are above 39K and hemoglobin has not dropped below 8. Big change from biweekly transfusions with platelets still staying in the low teens and HGB below 7. No reduction in spleen yet but maybe in time.

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Pte82
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11 Replies
EPguy profile image
EPguy

That's great news. Vonjo is supposed to do that, treat MF with low PLT counts. To see it doing what they claim is reassuring.

<<for the treatment of ...myelofibrosis with a platelet count below 50 × 109/L.>>

For the spleen <<29% of patients had a reduction in spleen volume of at least 35% compared to 3% of patients receiving best available therapy, which included ruxolitinib>>

So on Rux almost no chance of spleen improvement here, while Vonjo has much better chance and spleen reduction was a big reason it got approved quickly.

investors.ctibiopharma.com/...

Pte82 profile image
Pte82 in reply toEPguy

Yes, one of the problems with MF is spleen enlargement. Vonjo ability to reduce it takes time and because her spleen is 25cm it is possibly the cause of abdominal fluid buildup that will be relieved this week with a needle.

hunter5582 profile image
hunter5582

It is a blessing that the options for MPN treatment are expanding. Vonjo is a great option that will hopefully be successful for your spouse and others.

All the best to both of you.

Pte82 profile image
Pte82 in reply tohunter5582

Hunter I appreciate you support.

Wyebird profile image
Wyebird

Wonderful news . I have ET so never heard of vonjo. It’s reassuring to know that these meds exist. I do wish your wife’s condition continues to improve.

Pte82 profile image
Pte82 in reply toWyebird

Thank you.

Meatloaf9 profile image
Meatloaf9

Sounds like good news. Hoping and praying for continued improvement for your wife. Best going forward.

Pte82 profile image
Pte82

I was not expecting a 11k platelet increase so soon. She has two proactive MPN specialists in addition to exceptional pros in many health fields who are a blessing for her.

Bluetop profile image
Bluetop

So pleased you are getting some positive results. All the best.

mhos61 profile image
mhos61

This is encouraging news. I really hope everything continues to go well for your wife. Hope you’re getting good support too. X

Pte82 profile image
Pte82 in reply tomhos61

Yes, it's a departure from the earlier reports and not too soon.

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