Starting Venetoclax mono on Monday

[umpireman]

I am an 84 year old male living in Montgomery County, MD. I have had CLL for 10 years. During this time I have been treated off and on with Imbruvica. When on the full dose of 420 mg, I had multiple side effects such as twitching and swelling of my legs and arms. After a recess from the drug, my oncologist tried lower doses ending up with only one 140 mg capsule every other day. This drug increased by afib and arrhythmia heart problems so I had to stop Imbruvica permanently. We are going to give Venetoclax (mono) a try. Because of my past history of side effects and considering my age, my oncologist is starting me with the 10 mg tablet daily for the first month before considering the ramp up. My oncologist is recognized locally as a CLL Specialist.

My blood counts are not good, white count 77, hgb 8.8, platelets 61, red blood cells 2.61.

I have lived a long and meaningful life, but a few more years would be nice. Any advice would be appreciated

John R.

[Hidden]

John,

Ventoclax I hear is another miracle drug like Ibrutinub. I am pretty sure the Ventoclax will increase your mileage substantially (may be less off road though). I am 52, Dx 17 months ago and the last year has taken its toll on me because of fatigue....I always wanted to make it to 90 and then get shot by a jealous husband as I am caught naked sneaking out his wife's window....but I don't think I am going to make it.....so you gotta do it for me...OK?

Scott

[umpireman in reply to Hidden]

Hi Scott: Good thoughts about our bucket list. That is certainly the way to go out. John

[Luckyliss]

Hi john I’m in infusion room as we speak being monitored for my day 2 of dose 50 mg of veneclexta since it’s only been 8 days on it I don’t have much to report except I’m fatigued as usual and very bloated t and puffy - my nodes are still tremendous and painful at this moment ... I have a light headache as well and my numbers ar all way lower than yours - my wbc is 2.3 my hgb is 6 etc and have been like this almost for the entire 8 months when I started this chemo journey .... hoping I get some good results soon - the icing on today’s cake is my uric acid and potassium levels seeem to be ok 👌🏻 wishing you all the best going forward xoxo

FYI I’m a 49 yr woman from jersey lol

[Hidden in reply to Luckyliss]

Hey Liss,

There are CLL warriors for sure... you, Liss, are the Seal Team 6 of CLL warriors. Renee asked how you were today....send her a FB post tomorrow or next day about how you are doing

Scott

[DebKat999 in reply to Hidden]

I definitely agree with the above Scott. We are all with you Liss, sending my thoughts and best hopes your way...

Debbie

[mrsjsmith in reply to DebKat999]

And me ! I also agree with the above Alissa,

thinking of you every day and glad you are coping.

John I am currently on Ibrutinib in the UK but circumstances may mean a switch to Venetoclax in the future.

Wishing you well

Colette

[umpireman in reply to mrsjsmith]

Thanks for your reply. I will be posting my reactions to Venetoclax weekly for those like you who are considering this treatment. Hope it is the miracle drug the CLL Specialists says it is. John

[mrsjsmith in reply to umpireman]

Wishing you well John.

Regards

Colette

[umpireman in reply to Luckyliss]

Liss, you have had a rough road to hoe. I pray that Veneclexta is the answer for both of us. John

[ivy39 in reply to Luckyliss]

This has me puzzled. I thought Venclexta comes as a pill, so what are you doing in the infusion room?

[Justasheet1]

John,

Why are you going mono therapy? Adding Rituxin may give you a longer and deeper response.

Jeff

[umpireman in reply to Justasheet1]

Hi Jeff: My oncologist and I discussed this, but he said that Rituxin was only 20% effective. We could add it later if need be. John

[Justasheet1 in reply to umpireman]

John,

Please watch this video by one of the great minds in the business. She speaks to the Rituxin at the end.

Jeff

patientpower.info/video/an-...

[Fant1924 in reply to Justasheet1]

Where does one find the protocol for V+R? Secondly, how does one know that Ibrutinib is failing (ALC rises 3 months consecutively, ALC doubling time, return of B cell disease side effects...?)

Thanks,

Dennis, 71, Ibrutinib 33 months

[umpireman in reply to Justasheet1]

Thanks for sending this video. Very informative. I am glad I lived long enough to take advantage of the new drugs and treatments that were not available even a few years ago. I will keep in mind adding Ritukan along with Venetoclax after my test month on Venetoclax alone. John

[Luckyliss]

Thanks lovebugs I am home now with a 101.6 fever 🤒 and chills just took two Tylenol and a cold pack to the head - literally could put a pin in me and an elissa piñata would explode all over my house - fluids only hahahha

John keep us posted please xoxo 😘

[GMa27 in reply to Luckyliss]

Sorry to hear that. Virtual hug! Hope you feel better!

BTW: I was a Jersey girl...guess I still am deep inside! Lived in Central Jersey till 16 years ago.

[umpireman in reply to GMa27]

Gma. Thanks for the hugs and good wishes. Looking forward to Venetoclax. Hope it is the answer to extend my life. John

[MsLockYourPosts Passed Volunteer in reply to Luckyliss]

Those in the original trial, after problems with tumor lysis syndrome arose, were hospitalized, with IV hydration running. There were a lot of comments / complaints about being horribly bloated. Beats TLS, I'm sure, but dealing with all of that extra fluid must be frustrating. I suspect that sticking a pin in you would leave you dripping wherever you went, rather than causing an explosion, which isn't a very pretty picture.

[Canuck901]

Ventoclax is definitely supposed to be one of the latest and greatest treatments for CLL . Stay strong and we will be praying for you.

I would also try staying away from sugar and highly processed foods if you can

[winterwild]

Hi John,

I am on my 4th week of Venetoclax and because my platelets and neutrophils are low I will be staying on 100mg this week and hope to increase next week. I had Ibrutinib for a year a few years back, it worked wonders especially on my lumps but eventually affected my bloods. I have had Bendamustine in between as I became very ill last year. I was diagnosed 18 years ago and started Rituximab 17 years ago and have had FCR which didnt go down too well. I am almost 60. I am hoping that this will be the drug for me and wish you all the best. Apart from feeling a little fatigued which is possibly from my low blood counts, my whites and lumps and fluid have decreased. Good luck .

[umpireman]

Winterwild: Welcome to the blog. You sure have been wrestling with CLL for a long time. All the chemo drugs result in some fatigue. But, overall, glad you are feeling better. Hope Venetoclax is the answer for both of us. John

[Rosee3]

I was diagnosed with CLL 12 years ago but did not start therapy till 2015 when my lymph nodes were enlarged everywhere. I wa on infusion of immunotherapy twice s week and also a 40 mg pill every 15 days. I stopped the first Round 6 months later after having a CT scan which showed the lymph nodes shrunk. Since my portcwss never removed, my oncologist ordered a scan to see how the nodes were . The scan showed my lymph nodes were enlarged in my pelvic lining and lower stomach . He feels we are catching it in the early stage so I am on 420mg of Imbruvica once a day . I have been on this for 6 weeks. The only side affects I am noticing is bruising on my arms. I am hoping since I have been on the pill for 6 weeks. I will Not encounter any other side affects .

Ellen

[umpireman in reply to Rosee3]

Imbruvica is a wonderful drug if you can tolerate the side effects. It appears that you are getting along nicely. I had to go off Imbruvica due primarily to afib and cardiac arrhythmia, but also had swelling of left arm and leg and bruising on both arms. I hope Venetoclax will be kinder and gentler for me. Good luck to you and hope your symptoms continue to diminish in the future. John

[MsLockYourPosts Passed Volunteer]

Venetoclax has worked very well for many who had to go off of Ibrutinib. I hope that it is just what you need!

[Ezjacobs]

Hi fellow Montgomery county resident! My understanding is that sometimes they give the first dose at the hospital just to make sure that there is no tumor lysis syndrome afoot.

I guess given your age of wisdom I would check on that... Best of luck in getting older and wiser. Elaine

[umpireman]

I have read all the literature about tumor lysis syndrome and it is scary. I will be getting physical exams and blood tests in day 3 and weekly thereafter. So if anything shows up it can be treated right away. Thanks for your message and good wishes. John

[2004CLL]

Hi John! I just came of ABT-199 (Venetoclax) two weeks ago after being on it in the phase 1 trial for 6 & 1/2 years. Within the last year it had started to increasingly fade out on me, if you will. During the time I was on it I had no (other then chronic fatigue which I have had prior to dx in 2004 at 48 years old) side effects that I could contribute to the drug. As others have indicated you will initially be monitored for tumor lysis syndrome. I would be willing to bet that you will do just fine, and hopefully get as good a run as I did. Less then weeks ago I started a phase 1 trial combing cirmtuzumab with Ibrutinib. I start taking the Ibrutinib the 3rd week of this month, so far the first Cirmtuzumab infusion was uneventful. Good luck many have done well on my old friend ABT-199!!!

[umpireman in reply to 2004CLL]

Thanks. I am hopeful Venetoclax will stabilize my blood counts which are totally out of norm. I hope your new treatment is successful and you can recover from your chronic fatigue. John

[2004CLL]

I forgot to mention in my last year of Venetoclax I was on a 800 mg dose. Prior to that I was on a 600 mg dose.

[umpireman]

That is a big dose. I thought 400 mg was the maximum. John

[2004CLL]

That’s correct 400 mg became the approved dose, however I was in the phase 1 trial. As you probably are aware phase 1 trials are for determining safe doses. Again John it is a great drug In our arsenal with relatively few if any side effects, you will do well I’m sure! We all get nervous when we start treatment hang in there!