Starting Venetoclax next week

[Floxxy]

Hi everyone,I found out today that I am to start Venetoclax next week and Rituximab 6 weeks later for a total of 6 months.

I was diagnosed in 2018, had 6 months of FCR in 2019 which went pretty smoothly except for severe Neutropenia. I feel fine and my bloods are within normal range. My TP53 is negative but IGHV unmutated.

Anyone had a similar journey, what should I expect? X

[lankisterguy Volunteer]

Hi Floxxy,

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There are lots of previous postings that may help with answers.

There are a few listed in the box on this page labeled: Related Posts

*Starting Venetoclax next week healthunlocked.com/cllsuppo...

*Ibrutinib/Venetoclax Journey week 11 (start) healthunlocked.com/cllsuppo...

*Started Gazyva and Venetoclax healthunlocked.com/cllsuppo...

As you look on any of those pages look for the Related Posts box, since the contents will change with the different title wording.

Many members have the Rituxan or Obin / Gazyva infusions first and Venetoclax later, but it seems you will do the Venetoclax first.

Following the hydration and blood testing steps is important, especially if you have large nodes and spleen or a high ALC / Lymph# see: venclextahcp.com/cll/dosing...

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And many more here: healthunlocked.com/cllsuppo...

You may need to scan through the list or 2340 postings to pick the appropriate ones from the summaries.

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Len

Venetoclax ramp up

[Floxxy in reply to lankisterguy]

Thank you

[HopeME]

Hi Floxxy: If your bloods are fine I’m curious what is triggering you to begin treatment?

Thanks,

Mark

[Floxxy]

Enlarged lymph nodes. PET scan shows most lymph nodes are affected. Thank you.

[HJ_2]

Hi Floxxy, your journey is very similar to mine. I had FCR in 2018 then I started V and R this time last year. I am also IGVH unmutated. V and R is a great treatment and I have found it much easier than FCR. The five week ramp up phase is the trickiest as you have two days a week at hospital and bloods need taking twice a day so they are long days. Please feel free to message me with any questions.

Helen

[Floxxy in reply to HJ_2]

Thank you so much for your reply, that's very encouraging. X

[19930B in reply to HJ_2]

Did you lose your hair when you had both treatments.

[flipperj]

I have had a good experience with V and R. The first month is lots of monitoring and fluids because the treatment is so effective. Side effects are much easier than expected.

[Floxxy in reply to flipperj]

Thank you that is good to hear. x

[bettyba]

Hello

I had FCR in 2019/2020 and a year later V & O. 1.5 years on V & O and all has gone well. Just get ready for the ramp up. Take a good read and a film to watch and use the time to relax as much as possible as there is a lot of waiting around at hospital the first 5 to 6 weeks. So use the time to benefit you. I read lots, watched films, wrote to people and funny enough enjoyed that time to be just mine. Take carex

[Floxxy in reply to bettyba]

What great tips, thank you. good luck with your journey. x

[Sepsur]

🍀🍀🍀

[Floxxy in reply to Sepsur]

XXX

[Nicebaps]

I had no issue with Ritux and with regard to V just drink plenty of fluids. This will help with any potential initial side effects.

Good luck.

[Floxxy in reply to Nicebaps]

Thanks, so glad to hear.x

[Bethan49]

Hi! I too had FCR about 6 years ago . I am currently on Rituximab and Venetoclax and all has gone relatively smoothly. The ramp up of the venetoclax is the hardest as you have to have your bloods checked a great deal. You MUST drink copious amounts water to avoid TLS . So get a good water bottle and go for it!

I had to have a few of my infusions delayed due to neutropenia .but you already know what that's about!

Good luck!!!

[Floxxy in reply to Bethan49]

Great, thank you. Yes I do remember the neutropenia well!!! x

[skipro]

Hi

I was diagnosed in 2011, had FCR emended after 3 rounds for prolonged neutropenia.

I relapsed 2020 and am about to start Tx.

I was supposed to V + O

yesterday but post pone because I had a tooth abscess and I need a knee surgery tomorrow and two more skin cancers are to be removed on Friday.

I’m starting to have second thoughts and may want to do açal or zanubrutinib instead because I spent a year being neutropenic with FCR and then the last three years with Covid and now the thought of two drugs that will severely affected by immune system are some thing I’m not sure I’m ready for paragraph.

I think a single run treatment affective, and won’t impact my immune system as much I just don’t know if I can face all of the immunosuppression again just coming out of Covid.

Good luck with your treatment.

Skipro.

[Floxxy in reply to skipro]

Im so sorry to hear of all your troubles and hope that things improve greatly for you. x