Received good news today. the Insurance company approved Venetoclax for the treatment of my unmutated IGHV SLL. This is amazing because I don't have the 17p deletion that is usually required for approval. I thought for sure it was going to be a long uphill battle with the insurance company. Going back to UPENN on August 18th to learn more about the ramp up protocol. Can anyone share their experience on Venetoclax?
Renee
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Yeah, I'm doing the Happy Dance and celebrating too!
Wonderful news!! My insurance company approved Venetoclax for my 13q deletion CLL. I started Venetoclax front line in December 2016. I have had no side effects at all and my fatigue is tremendously better. My CBC was normal by week 4 even before going on the full dosage of Venetoclax. The ramp up over 5 weeks was uneventful with no evidence of tumor lysis syndrome. I was at moderate risk for TLS based on WBC and lymph node size so dosage ramp up was managed outpatient. Those patients at high risk for TLS require in-patient management. I had labs drawn prior to the first dose and each dosage increase, then 6 hours and 24 hours after taking each new dosage of Venetoclax. Never had a problem. I wish you well!
Hi RenneSusan,
My experience 6 weeks in to venetoclax from Ibrutinib is very similar to MelioraDay.
Good luck as you go forward.
David
I am delighted to such about such positive experiences. It makes me even more sure I am making the right treatment choice. Best wishes.
Wow that is just fantastic! Hoping my treatment goes as successfully as yours! May I ask where you go for treatment management?
Hi
I'm with Dr R Walewska at RBH Bournemouth. A great team.
David
David I wish you all the best. I see Dr. Mato at the University of Pennsylvania.
Dear MelioraDay:
Just wondering did you work while on ramp up of Venetoclax and after? I'm wondering if Ill need time off or temporary disability.
Renee
I was already on disability prior to starting treatment with Venetoclax. Whether you will need to be off work during the ramp up will depend on a number of things. First, if you are at high risk for tumor lysis syndrome (TLS) based on WBC and lymph node size, you will have to be hospitalized for the first day or two when starting Venetoclax and I think also for the first dosage increase for IV hydration and frequent labs. If you are at moderate or low risk for TLS you will be treated as an outpatient with good oral hydration and labs prior to the first dose and each dosage increase, and at 6 and 24 hours after the first dose and each dosage increase. I did very well with the ramp up but everyone is different. I may have had one day of slightly increased fatigue with each ramp up, but it may have been just co-incidence or due to the fact that I had to get up much earlier than normal to get my pre-dosage ramp up labs done. Other than that I actually started feeling better in terms of my fatigue level as each week went by. You may want to consider taking at least the first day or two off work when starting treatment to see how you do and allow time to get your labs done. Some people get GI issues such as diarrhea and nausea when starting Venetoclax. I never had the slightest bit of that, but you probably wouldn't want to be at work if that happens. Keep us posted on how things go for you. Wishing you all the best. What is really nice is seeing totally normal lab work which happened for me at about 4 weeks after starting Venetoclax.
So happy to hear things went smoothly and without adverse reactions. Did you have to stay at the hospital/doctors office the entire day until 6hour labs? I don't live near UPENN. It's an hour and 30 away. I wonder if they will keep me over night. I did have issues with tumor lysis and dehydration on BR. Was hospitalized twice the first go round of chemo and once the second time. I also had a reaction to allopurinol, so I think they're giving me another drug.. I'll know more this Friday. Going for testing and inservice on ramp up protocol. Do they do another bone marrow biopsy before treatment?
Renee
I had an apartment near the cancer center during my ramp up so I just walked over to the lab, got my blood drawn (STAT), then went back to my apartment to wait for the clinic nurse to call me with the test results and recommendations. They won't keep you there unless you are having problems or at high risk for TLS. However you will want to stay in the area while you wait for test results in case there is an issue they need to treat. Here is a link to information about Venetoclax ramp up and criteria for determining whether you are at high, moderate or low risk for TLS.
venclexta.com/content/dam/g...
Usually they treat you as an outpatient with good oral hydration if your lymph nodes are all less than 5 cm. Your tumor burden is what they are looking for and your WBC and lymph node size is a reflection of that.
I had a bone marrow biopsy just before treatment. It was my first one. If you have not had a recent BMB they will probably want to get another one prior to treatment.
Wishing you all the best. I couldn't be happier with my response to treatment. Hope all goes great for you as well. Keep us posted!
Hi melioraDay. Are you mutated? Would love to look into Venetoclax as front line treatment. Hope you are doing well!
Yes I am mutated. Still doing well. Best wishes!
Good news. I hope we hear more news like this for all that need these drugs. Brian.
Brian, I couldn't agree with you more. Maybe the insurance companies are starting to realize it is better to spend the money to get us to a healthy place if not cured!
Hi Renee. Hope all is well. I run the Philadelphia chapter of the Cll society support group. Let me know if interested to attend an upcoming meeting.
Antibiotics with Venetoclax 
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