Hello. I have just joined this blog in hopes to learn more from other people who are going through similar treatments. Although, I have gone through lots of treatments for lymphoma. At present, I am taking Veneclexta 100 mg that has taken some time to get to due to having started at 10 mg. I do suffer with the same symptoms that most of you do as well, such as, swelling , fatigue and shortness of breath. I tried imbrubica and Benetamustidine and neither were successful. I will be taking Rituxan when I get to 300 mg which is probably the highest dose because of my A- Fib. Hope to get to know more people with similar conditions. In warmest regards.
Hello from TN: Hello. I have just joined this... - CLL Support
Balseria! Venetoclax is one of the most amazing drugs ou here. My chemo buddy and now dearest of friends has been on it, fully ramped up, and going to the clinic once a month for Rituxan for 2/3/4 months and is feeling better for about the first time in 10 years. She is being treated for AML I believe. She is also Dr Flinn’s patient. Bottom line: Venetoclax is a
Phenomenal drug! Stick with it no matter what until you hear differently! Don’t be swayed,but always keep up on the recent research 2018 an 19
Mantle Cell Lymphoma is a different animal to Chronic Lymphocytic Leukemia, while there are some markers similar (CD5+ is one they share) they are distinguishable and treated differently.
You will find that our discussions are all about CLL/SLL, as we are each of us from admins to volunteers to all members dealing with that diagnosis, so we won't be much help to you.
Here is a forum that may be quite helpful to you:
Treatments are similar, for example acalabrutinib is FDA approved recently for MCL, but not CLL. Lucky you... 😄
We still wait.
Also dosing is different. You are welcome to remain a member, but if you post please be certain to mention you have MCL and not CLL ever time...
I think you will find most discussions will be confusing since some things might apply, others will not apply in your situation...
All the best
Jeff, and I will so appreciate your prayer.
I have been under watch and wait since 2015. My hemoglobin went to 6 this past August and has been up and down ever since . We cant seem to get it back up to 9. So I have had several blood transfusions. I think it was 8.7 last week.
I’m on heavy steroids because the anemia gave me A-Fib, chest pain , kidney pain, no appetite!
Now I eat all day long!!!!
Mini in GA
Good luck tomorrow... I hope you get the best outcome and your all clear...
I know the anaemia situation from personal experience which can be frightening enough.... be strong and brave and what ever happens keep your chin up and deal with it head on and you’ll get thru...
Don’t let any of this stop you making plans with life you’ve just got to get past this next chapter and you will..
Once again I hope it all works out for you