Has anyone undergone treatment using this IV drug? To start next week in treatment of my Sezary syndrome. Really like to hear of others experience on it.
Best of luck with your treatment this week - I hope that it all goes well for you. Information on Brentuximab can be found on our website on this page. I hope that you will hear from the experiences of others who have had the same treatment. I had a little look around the forum and found this thread by AbbyMax2000 who posted a few months ago and was about to also have Brentuximab. Feel free to respond to that thread if you wish. I hope that you can exchange notes and tips based on your personal experiences.
Hello Abby, thx for acknowledging my inquiry. As you saw from my post I suffer from the subtype of TvCell Lymphoma called Sezary Syndrome. After 3 months of Methotrexate, 1 month on Chemo & 4 of ECP blood treatment we have gotten my White Blood count back within normal range but the cancer is now attacking my skin. Opinion now is that a change to Brentuximab would be in my best interest
Curious about a few things, what type of T cell lymphoma you are being treated for, your treatment journey if it is Sézary as well, side effects from the Brentuximab and overall results
Lucie, I have not received a response from AbeyMaxon on my inquiry. She says to message her and K don’t know how to do that.
Had my first infusion a week & 1/2 ago. The day following, thought I was experiencing a miracle, the day following that it was back to reality. Does appear to be showing results, the itchiness is letting up.
Hi, its non hodgkins tcell lymphoma i have, and have only had brentuximab CHP the whole treatment - side effects for me were extreme nausea the first 3 times but they have managed to get on top of that with a few different anti-sickness medications and methods. After my 3rd treatment i had a CT scan which showed my tumour to have shrunk and everything was on track. Yesterday i had my last treatment and will need to wait 6 weeks to get the all clear (hopefully).
Abby, thx for the return. Was hoping to connect with someone being treated with Brentuximab for Sezary Syndrome but appreciate hearing of the side effects that you experienced. As mentioned, the first day after my infusion I felt incredible but came back to reality on the the second day. Had an upset stomach for about 4 days but that seems to have settled. Right now I’m having most discomfort from my feet. The heavy scaling on my feet has returned since I went off the Methotrexate and I a flare up of my gout has attacked my toes making getting about painful. Under treatment with my family doc so hopefully this under control soon. Pleased to hear that you’re nearing end of your NHL journey, May your future hold some wonderful experiences for you.
