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Venetoclax/Rituximab treatment for Refractory CLL

Hi, I'm Lynn T J.

8/10/19

  • Post #1
  • Sat Aug 10, 2019
Hi, I'm Lynn T J.

After 4 years of on and off treatments for CLL I am going to begin treatment with oral Venetoclax and monthly infusions of Rituxamab. Has anyone been on this treatment, and if so, what were your experiences. As with most therapies, side effects are a large concern. The literature sounds promising but it’s always good to hear first hand experiences.

  • Post #2
  • Sat Aug 10, 2019
Hi, I'm ROBERT L S.

Diagnosed with small cell B-cell lymphoma of intra-abdominal lymph nodes.
Initial treatment included infusion with Rituxan but was changed to Imbruvica four months ago. Following initial infusion of Imbruvica, I developed harsh, red rash with the first two weeks. The condition progressed from itch to burn to pain, and lasted about ten days before slowly healing over three days. I currently suffer from a chronic skin condition of random red bumps that occasionally drain a straw-colored fluid. These appear mostly on my upper body, arms, face, scalp, and back. Individual bumps normally dry up and heal in about a week; some have lasted several weeks.
Side effects that I did NOT experience: hair loss, nausea, weight gain/loss, drowsiness, abnormal vital signs.

  • Post #3
  • Sun Aug 18, 2019
Hi, I'm Alan E B.

Rituxan has destroyed my life. I was in 6th hour of my initial infusion of that chemo drug when SHTF. I convulsed and they filled me with benedryl and Medrol after immediately stopping the infusion. It took me about 1 1/2 hours to settle down. Then the problems started. Thrush mouth for 3 weeks, loss weight of about 24 lbs, eyesight came and went, bowels stopped working, rituxan rash so severe I could not sleep, I shed all my skin 2 times over the course of a couple of months. The drug awakened a form of herpes zostra that caused me severe pains that would take me to the floor and locked up the whole right side of my body. This went on for several weeks until the Cancer Center brought in a palative care pain team who finally got me stabilized with huge doses of medication. sores came up on my fingers from the inside to the outside. I developed neuropathy in my hands and they became so tender I could hardly hold or touch anything. It has been 5 months since all this happened and I am still not the man I used to be. Be careful with that drug. I know that many have great results taking it. But, if you are one of the unlucky ones like I was there is a living hell awaiting you. You will have to sign a form saying that the side effects may occur including death as a possibility. It almost killed me and I am still having side effects from it 5 months later. Be forwarned and good luck.

  • Post #4
  • Tue Aug 20, 2019
Hi, I'm Janis J L.

I was diagnosed in January 2019 with stage 4 mantle cell lymphoma and put on a research trial. There are six of us (worldwide) currently on the same treatment of RITUXIMAB, VENETOCLAX and ACALABRUTINIB
I have RITUXIMAB infusions every other month now but they were weekly, then monthly in the beginning. My side effects in the beginning were an itchy rash on my legs and arms and headache. I still have a headache the day after the infusion but I don’t have the rash anymore. All of these side effects are minor and manageable. The Venetoclax and Acalabrutinib tablets I take have given me insomnia and diarrhea – which again I consider mild and manageable side effects. After 4 months of treatments I was told I am in remission and have been in remission for 4 months now. I am so grateful for this research trial and for these medications (which I will continue for 4.5 more years). Although everyone is different, I believe this combination works miracles!

  • Post #5
  • Sat Aug 31, 2019
Hi, I'm Bill

I was diagnosed with CLL about 3 years ago and have had 2 episodes of severe anemia including hospitalization and blood transfusions. After the first episode I had 4 infusions of Rituxin which brought my hemoglobin up from 5 to @ 13. The only reaction to the infusion was chills during the first infusion which was brought under control by the nurses. I was stable for about a year and a half until I contracted a fever from a hip operation which caused my hemoglobin to crash back to 5 again. My oncologist then started me on a regimen of Venclexta pills and monthly Rituxin infusions for 6 months. I was his “guinea pig” for the Venclexta since it was a very new drug. The schedule was to begin with small dosage of @ 10 mg daily and ultimately work up to 400 mg daily. It turned out that I could only tolerate 200 mg daily. I’m now finished with my infusions and have been on 200 mg of Venclexta for the past 6 months. My hemoglobin count of 15 is excellent and I feel good. Since the Venclexta needs to be taken for around 2 years I really don’t know what the end result will be and I know not everyone will benefit from these drugs but to me it was a risk worth taking.

  • Post #6
  • Sun Sep 8, 2019
Lily E

Hi, has anyone tried the Chris Beat Cancer Protocol? I found it on Facebook. It makes sense to heal your body by overdosing on nutrients found in plants, nuts and seeds. But even then we have to supplement vitamins, minerals, and enzymes because of soil depletion. I know that I didn’t eat clean and was under a lot of stress and didn’t have the energy to exercise so I was overweight. It’s scary to get off of AI’s and Ibrance. I know that everyone is different and what works for one may not work for someone else. There are so many docu-series out there hailing the natural treatments to beat cancer. I can’t help but remember watching the movie, The Dallas Buyer’s Club. Prayers go out to you as we go on our journey. I thank God I’m alive to see another day.

  • Post #7
  • Mon Sep 9, 2019

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