Don't give up just enjoy each day!

[The_Eagle]

The_Eagle

If you have CLL you need a CLL specialist. I have two and this month I am starting on Gayza only because I did FCR in 2009 and chemo pill in 2017 but could not tolerate it. My doctors told me to do the Gayza for 4- 6 months and hopefully my blood will be better but to continue living I will need chemos pills. they have a new one without all the side effect but have no idea if I could tolerate the new one. I will also need assistance as the drugs are expensive but now that I am in the poverty income I might get them.. Good luck the pills are better than intravenous drugs. Gayza I do not believe is a chemo drug according to my two doctors. It is a new form of Rituximab

(the R in FCR).

Medication Description Rituximab, sold under the brand name Rituxan among others, is a medication used to treat certain autoimmune diseases and types of cancer. I been told Rituxan new name is Obinutvzumab (3rd generation) and without chemo will not cure CLL but might get you into a quick remission.

My last blood test my doctor were afraid to send me home it was so bad. WBC was 188.56, RBC was 2.97, Hemoglobin 9.2 , neutros 3% , lymphs 97% Lymphs, ABS is now at 182.90 last year it was 11 so it has gone up a lot which is a bad sign also unmutated. join patient power for more information. lympy nodes now 3cm by 2 cm (was 1X1 cm) spleen is also 3 cm larger and its it hard to eat.

Hang in there I should have been dead years ago in fact got over Pneumonia in April large spot on my lungs. The doctor did not tell me until I was ok never even went to the hospital. I did have to fight it for 5 - months until they got me to a lung doctor who waited until I cough so up and tested it.

just enjoy everyday my goal is to take at least one more trip or vacation its been 2 years and have not felt good enough to go away. Maybe in 6 month this Gayza will give me a year! if not no big deal but if yes great!

Bill

[cllady01 Former Volunteer]

Is the pill you will be taking, Venetoclax or Leukran (chlorambucil)?

Just so you know, Venetoclax is not a chemotherapy.

And, depending on your particular situation, there have been much longer than a year remission with Gazyva and Chlorambucil.

Gazyva and Venetoclax is a combination that is fairly new, but has been shown to give as long a remission as the G+C .

I hope you are able to take your trip soon and can enjoy the freedom and beauty of new or old favorite places.

Best wishes to you.

[WinJ3]

You’re so right Eagle! Enjoy every moment! I had Gazyva treatments a year ago and so far so good! Hopefully you will have a great outcome!

Best wishes for you! Keep us informed 😃

[MsLockYourPosts Passed Volunteer]

Gazyva alone in 2015. No side effects at all. Still in remission and doing well. I'd use your time "in the chair" researching places you've always wanted to visit.

[LovecuresCLL]

I think you should be a lot more optimistic than 1 year left to live on Gazyva. I know you are incorrect with your one year overall survive that’s not what any of the studies are predicting. But I would not delay taking vacations etc. I think enjoying each day is important.

I think you are going to be surprised that you get a longer remission and much longer survival....,say ten years or more . Side effects due to Gazyva is low.

Venetoclax is a immunotherapy that is working well too. They can try that.

Let us know how your vacation goes!

You will be on this website for many years to come.....just take proper precautions against infection.

[The_Eagle in reply to LovecuresCLL]

thank you everyone i hope it will be longer than a year I took Imbruvica in 2017 and my blood pressure was over 209/140 plus heart issues and vision, falling down etc. Doctors took me off it after about 8 weeks but I started with one pill and only took 3 pills for about a week or so. so now they want me to take albruvian and since I only get SS or $30000 a year income I might be able to get the pills but we will see what happens i will keep you updated. my web site for information on computers and scams is edited out by Admin due to personally identifiable information being posted. I have a lot of computer classes to help you and other stuff. Will keep everyone updated! Maybe I could go back to work!!!!

[LovecuresCLL in reply to The_Eagle]

You will be well enough to!!! You are going to get better. There are ways to get pills too. Just have faith. I am getting alll the treatments I don’t worry about the bills and everything is getting paid somehow .

[Newdawn Administrator in reply to The_Eagle]

I’m afraid I’ve had to remove the personal email address you posted The_Eagle as it’s not permitted to do so on this site especially as your post is unlocked (as explained by JigFettler below).

Regards,

Newdawn

[The_Eagle in reply to Newdawn]

thank you did not think about that

[JigFettler Volunteer]

Hallo Eagle!

Because your post contains personal information and a traceable link you may wish to lock your post.

... bottom of your post ... for community only...

You have had a torrid time. I hope and pray your next meds will be good for you.

Wishing you strength and success.

Jig

[Emerfly]

Hello Eagle you have been having such a hard time with your treatments I can understand why it is so difficult to be upbeat about outcomes and side -effects of new treatments . You know that saying ‘You only live once ‘ ? It’s not true ...you only die once , you live every day . Book that holiday soon ! I hope the new treatment is kind to you . Best regards . Emer

[Smakwater]

Eagle,

Gazyva aka Obinutuzmab is a monoclonal CD20 antibody. The MAB on the end of obinutuzumab is for monoclonal antibody as is Retuximab. Gazyva has shown in some research to be more expedient and with superior results in CLL than Retuximab.

ncbi.nlm.nih.gov/pmc/articl...

Gazyva binds to the CD20 which is a B lymphocyte antigen that plays a role in signaling cell death in B cells.

It is likely that the pill you refer to is Venetoclax which is a BCL-2 inhibitor. BCL-2 is a gene that participates with proteins which regulate cell death in B cells.

Gazyva is an infused drug that is usually administered in cycles over a six month period, and recently it is the pre treatment for venetoclax which is a pill. This combination therapy referred to as O+V was recently approved in the U.S for CLL.

healio.com/hematology-oncol...

Pre treatment is the removal of lymphocytes in the peripheral blood to a safe level so that tumorlysis does not occurs when the venetoclax is administered.

The Venetoclax is the agent which produces the more durable cell death responses in the bone marrow.

Although I am not certain that this is what your doctor is speaking of, it is a possibility based on what you have described.

JM

[SethB34]

You are right, Bill. The challenge for all of us is to try to live each day to the fullest. Too much worry about the future interferes with everyday living. It’s easier said than done from my own experience, but possible. Thanks for sharing.

[The_Eagle]

great news for me and maybe you I was able to get a grant from the Pan foundation 9700 not much considering the price of pills but this week my Doctor at the University of Texas in Dallas thinks that I can get the pills with this grant and also a new clinical trial that is coming up. I am jumping with joy but the trial at this time has no name and I have no real information but should know more around September 3. I had almost giving up hope but maybe this will help me for a few years.

It been over 2 years without a remission and my lymph nodes are all swollen, the largest is 9.5 by 6.5 in my stomach so it is hard to eat and I look like I am 7 months pregnant. All I can say is hang in there say prayer and hope for the best!

Bill