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Anyone have experience with HHT or Osler-Weber Rendu?

Blood Cancers & Disorders | Last Active: Jul 31 4:41pm | Replies (23)
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@jacquilogan

Hello, I’m 62 and have HHT. Multiple family members have had it, and so we know a lot about it, (sometimes more than the doctors.) I have nosebleeds, telangectalias on my tongue, and a plethora of AVMs in my liver. Ugh… Has anyone heard positive things about Avastin?

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Replies to "Hello, I’m 62 and have HHT. Multiple family members have had it, and so we know..."
Lori, Volunteer Mentor | @loribmt | Dec 12, 2023

Welcome to Connect, @jacquilogan. Talk about genetics… Really interesting to see how hereditary hemorrhagic telangiectasia has been passed along to members of your family. You’re all very familiar with HHT, so I won’t post links to informational sites of the blood condition. You’ve most likely read them all.

However, according to Curehht.org, Avastin (Bevacizumab) was approved for the treatment of HHT with postive results. I’ve posted the link to that article and another from Ashclinicalnews.org below:
https://curehht.org/wp-content/uploads/2020/07/POLICY-STATEMENT-Bevacizumab-Use-in-HHT1.pdf
~~~~~
https://www.ashclinicalnews.org/on-location/other-meetings/systemic-bevacizumab-improves-anemia-reduces-bleeding-hereditary-hemorrhagic-telangiectasia/
We have quite a few members in the forum who have used bevacizumab as a treatment for their particular forms of cancer. While we’re waiting for someone with HHT to join the discussion and relate their experience with Avastin, what is your hesitation in taking this medication? Was this suggested by your hematologist? Has anyone in your family tried this?

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