I have been on Imbruvica for 4 yrs, all was going great until the beginning of this year. Now my blood work is out of wack. Today my dr told me to stop Imbruvica and in two weeks I will start Venetoclax, I like to know those of you on Venetoclax, what tests were done to make sure you were a good candidate for this drug, also were you inpatient when you started? How about at ramp ups? How long before everything went back to relatively normal range? I am planning a trip to Cuba in November to take my adult sons to see my country of birth and meet a lot of my family that still live there and I’m concerned I may not be “healthy” enough in November and should postpone it to February. Thanks for your input.
Imbruvica to Venetoclax: I have been on... - CLL Support
I went on a trial of Ibrutinib + Venetoclax and the initial testing was just the usual blood tests, including kidney/liver function, and an ECG to check my heart rhythm (for the Ibrutinib). I think most people can take Venetoclax.
The ramp up is done as an outpatient unless you have very high ALC levels and/or very large lymph nodes. I had ALC around 100K and that was fine. There's a 5 week ramp up period where the Venetoclax is increased each week. You should expect to have blood tests every week during this period and they are particularly careful on the first dose and the first (increased) dose of the second week.
Everyone's different, but my ALC levels were down near normal within the 5 weeks. My other blood levels were normal also. I didn't find that the Venetoclax had any noticeable side effects. It is best to take it easy the first couple of weeks and drink lots of water to flush all of those dying cells out.
If you're feeling OK now, I'd be surprised if you weren't good enough after the ramp up period to go on holidays. I went for a week's holiday between week 3 and 4 and was as active as anyone (just had to stop at the toilet more due to water intake).
Marti, I would second the suggestion to get an opinion from a CLL Specialist about stopping the Ibrutinib before starting Venetoclax. In the olden days (2-3 years ago) the common thinking was that you needed to 'clear' yourself of the old treatment before you started a new one. But I have read that this is changing. If you are relapsing on Ibrutinib, then it means that it may still be working, but just not as well as it did (I was on Ibrutinib for 4 1/2 years before this happened to me). But some new data shows that if you stop Ibrutinib, your disease MAY progress very rapidly, so the newer models keep you on Ibrutinib until right before you start a new therapy. Ibrutinib only has an elimination half life about 4-6 hours, so your body actually clears it very quickly. This is one reason that it is a daily drug. I know several people that stayed on Ibrutinib for a period of time even after they started Venetoclax, so I am unsure as to why your doctor wants you to stop it. I am not a medical professional, just a patient, but I would surely ask a CLL specialist their opinion on this.
I have been on Venetoclax for 2 years after failing Ibrutinib (skin rash) and Idelalisib (24 months CR and then 3 months of ALC rise to 9k).
If I had been able to start Venetoclax while on either Ibru or Idela, my doctor would have allowed me to do the dose escalations as an outpatient. If your nodes are allowed to grow- then you are higher risk and might need to be in the hospital with a saline drip for 30+ hours.
My nodes disappeared in 2 weeks and my blood was normal in 5 weeks. I would bet that you will be in better shape to travel if you complete the 5 week ramp up Venetoclax before your November trip to Cuba. Get it done ASAP!
I think the idea for stopping Ibrutinib for 2 weeks is the opposite of what a CLL expert like Dr. Furman would advise. Get a 2nd opinion or have your doctor call one of the big guns like Furman, Wierda, Lamanna, Keating, etc. for an opinion on the Ibrutinib to Venetoclax changeover.
Thank you everyone, I made the decision to continue on Imbruvica until I start the new meds. I will see my oncologist Monday since yesterday he was not there and I saw the nurse practitioner. I want to inquire why I have to wait two weeks, also want a new BMB since it’s been 6 yrs since the last one and also discuss the tests I want him to order prior to starting. He is a CLL specialists but I think he needs to brush up on new protocols.
Hi Marti: After taking ibrutinib off and on for the last two years, I had to stop Ibrutinib for afib issues four weeks ago. My oncologist and I agreed to start Venetoclax next week. Let's keep in touch to see how we get along taking Venetoclax. I am only taking 10 mg initially to see how I tolerate the new drug. This dose may be increased later. John
Everyone starts Venetoclax at 20mg for one week and a blood test checks for any signs of TLS before a 50 mg dose on day 7. Then "rinse and repeat" at day 14 for 100mg, day 21 at 200mg, etc for a total of 5 weeks to reach 400mg. BTW the rinse is 57 fluid ounces of water per day.
All of this is spelled out in the fancy package you will get from the specialty pharmacy.
Hi Len: I am beginning to doubt my oncologist's expertise in CLL. I had to inform him of the success people on the blog have had with Venetoclax. He said he was embarrassed that he had not thought of this drug before. He did order the drug for me but I have insisted on having the kidney and liver tests that were recommended by the pharmacy before beginning and thereafter. I see him again on Aug. 2 to begin this process. In your experience, did you ramp up from 10 to 20 to 50 to 100 mg and finally arriving at 400mg for a daily dose? How long in between doses did it take? I don't see this schedule in the literature from the pharmacy. Also, did you have blood tests performed regularly and on what schedule? Your help is very much appreciated. John
The dose progression is closely prescribed by the drug manufacturer,
I don't think you can get the 20 mg or 50 mg tablets any other way.
your doctor should be following this assessment and testing exactly: venclextahcp.com/venclexta-...
I really would be worried about having someone that unfamiliar with Venetoclax taking me through the dose ramp up.
There are blood tests needed on a STAT basis on the first day, checking for high uric acid, high potassium etc. The blood is taken before the dose, 6-8 hours later and 24 hours later.
That sequence is repeated on the 7th day, 14th day etc. If your doctor has never done these before, it could be very dangerous.
You really should get a 2nd opinion from a CLL expert before starting the first dose.
Sounds like a plan. Have they done any tests to see what your risk level is for TLS? Another person posted here they did kidney/liver function test and heart check ups. There are three TLS risks level: low, medium and high all based on the results of those check ups. I will be discussing all of this with the oncologist on Monday. I also get gamma guard every 4 to 6 weeks because of my immunodeficiency that keeps dropping below 400. I have diabetes and cutaneous lupus. Both these autoimmune diseases are well under control. I feel very positive about this new journey which sounds like it’s going to be great for us. I still have my site in the Car T cell therapy that I understand it’s only 2 years out to get FDA approval for CLL. Lots of options in the horizon for us!
I wouldn't worry too much about TLS for Venetoclax any more - with the current ramp up procedure it doesn't pose a great risk. Very few people need to be admitted to hospital for the initial dose.
I expect you'll end up taking those first tiny pills and feel nothing different at all. For me, it was like taking vitamin pills, other than the water guzzling and toilet stops. It does kill those CLL cells very rapidly though - my counts dropped by 20K in the first 7 hours on 1/20 of the full dose.
Marti - I see in past posts that you also get IVIG. When you see your doctor you might want to bring up the timing of that in relation to your trip to Cuba so that you can get the most benefit from it while traveling. If you bring it up now you should be able to make minor adjustments each month if your current schedule would put your infusion due while you are gone or out a few weeks from your trip.
I hope that Venetoclax is the magic pill for you that it has been for so many friends!
As you are using a photo, if it is of you, you might want to lock (restrict to community only only) your posts. People are more likely to share experiences under a locked post, also, as the original post controls the privacy of all replies. I noticed that a post to the Patient Power site is locked.
Let us know how things go on Monday. If you feel that your oncologist is not up to date on things you might want to get a second opinion, given that this is your 4th? treatment and that you are looking seriously at CAR T in the future.
Personally I would follow what your Doctor has told you. If he is a CLL Specialist he should know. I was on Ibrutinib 3 years ago for 1 year. It was great, got rid of my lumps very quickly and eventually levelled out all my bloods but after a year sent my bloods heywire. I was able to get through the next year with prednisolone, although my blood was not great. When my bloods were really bad I tried Ibrutinib for a week but my bloods plummeted again, whites went really high. I ended up in hospital having to have red blood, platelet and Neutrophil injections. I am unsure if this was the Ibrutinib or the CLL itself. I then had 4 doses of Bendamustine which kept me stable for 6 months. I am now on my 4th week of Venetoclax and so far so good. I am hoping this will be the drug for me. I was diagnosed 18 years ago at 42 years old. I think I would have had the disease for at least 2 years beforehand. Good luck with Venetoclax.