Hello from TN: Hello. I have just joined this... - CLL Support

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Hello from TN

Balseria
Balseria

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.

26 Replies
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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

al

Thank you for the info. He has just been on this drug since Dec 26 and haven’t seen much improvement yet, but figured the higher dose would be more affective. We are hopeful it will be. Have your friends experience been positive?

cllady01
cllady01Volunteer

Welcome! Is your diagnosis, CLL Balseria?

Balseria
Balseria
in reply to cllady01

Mantle cell Lymphoma

cllady01
cllady01Volunteer
in reply to Balseria

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:

smartpatients.com/forums/ma...

Balseria
Balseria
in reply to cllady01

Seems like your treatment is same

Cllcanada
CllcanadaTop Poster CURE Hero
in reply to Balseria

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

~chris 🇨🇦

Good luck from a CLL/SLL neighbor in Sparta TN

Balseria
Balseria
in reply to markjeep51

Thank you

Welcome from the ice city Montreal , Quebec 🇨🇦

Balseria
Balseria
in reply to Lola69

Thank you

Hi from Nanaimo BC, Balseria. Good luck with your MCL.

Thank you for the support

Good luck to you and you just be positive that is powerful medicine allby itself!!

Balseria
Balseria
in reply to Panz

Thank you we are positive sometimes it is difficult . With the ML tumors keep growing and after the stem cell relapse it has been hard but we sure are doing our best. Just keeping right foot forward.

God Bless you both....and I mean that as I know from experience that it is even harder on the caregiver then the patient. The patient must play the hand he or she is dealt but the poor caregiver is at loose ends watching. Hang in there! 🙂☘️

Yep, lots of of the same, but you are in a good group! Having a full body PET SCAN tomorrow ( power of prayer). Dr. is looking for a possible secondary cancer. I am praying for NEGATIVE RESULTS. I hope it turns out to be

an autoimmune issue instead.

Mini in GA

Newdawn
NewdawnAdministrator
in reply to Mimi4times

Best wishes for a good outcome Mimi!

Everything crossed for you.

Newdawn

Mimi4times
Mimi4times
in reply to Newdawn

Thank you so very much!

Mini in GA

Mimi4times
Mimi4times
in reply to Newdawn

SWEET!

Mimi,

I’ll say a prayer tonight too.

Jeff

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!!!!

Thank you,

Mini in GA

Lewis78
Lewis78
in reply to Mimi4times

Hi Mimi

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

Stuart

Mimi4times
Mimi4times
in reply to Lewis78

Oh how sweet! Thank you so very much!

Mini in GA

Balseria
Balseria
in reply to Mimi4times

Pray you have good report

Mimi4times
Mimi4times
in reply to Balseria

I thank you!

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