Starting V&O Help!

[Melij]

I have followed this group since joining as I was diagnosed with CLL in 2022.

I will be starting V&O treatment April 9th and would like to ask: What you wish you had know before treatment that you found out during or after treatment ?

Thanks,

Lynda

[Shepherd777]

My wife had 17p and Tp53 in 2015. They gave her little hope and said she had maybe two years to live. After her first year the FDA cleared a new drug. Venetoclax sounded promising. It was astounding and brought her WBC count from over 97000 to 4000 in 4 weeks. After about11 months she was in remission for over 3 and a half years and now 10 years later she is still with me and her cll is indolent due to acalabrutinib.

[Sunrisejoy in reply to Shepherd777]

This was wonderfu to read and know! SJ

[Swanseacity in reply to Shepherd777]

it doesn’t have to be negative! I finish V next week after the year. There were some excursions in my blood at month 6 and 7 until settled on 200mg - but zero side affects. Really hope you have the same! Live around Newmarket Ontario - so went to Southlake - pleased with the urgency shown by my onc

[Cllady25]

Melij

If you have not noticed the listing titled Related Posts, it should be to the right side of your today's posting. Each of those posts and the resultant replies can be a refresher for you if you have already read some of the in the last few years.

I was loaded with information before my treatment by doing just what you are--seeking information from this forum. And, while I was not looking forward to treatment, I had an idea of what to expect as well as the knowledge that as much as we are alike, we are different in many ways and my experience would not match anyone's exactly.

I had V+O Sept 2021—Sept 2022 with no big surprises except that I was only on 400mg of Venetoclax for a few days (maybe a week) and then lowered to the 200mg dosage for the remainder of my years treatment. I did have a reaction to the first infusion of Obinutuzumab, but the infusion RNs were quickly able to slow the medication, add what needed to be added and all went smoothly from that point on.

I particularly enjoyed the infusion days because the nursing group that attended were so affable. And they provided bowls of packaged treats and soft drinks. I seemed to be the last one in infusion each day and the last one out. And, last summer, when it was miserably hot, I went back into the infusion room and asked if I could take a cola from the fridge to cool off a bit before my car air conditioner could cool the car. They said, take 2 (I didn't) and said, come in anytime you are here for a Dr. appt. (I haven't) but may again this year.

Best wishes for a similar party-like experience--take a book/magazine/or your charged phone to infusion--it is a fairly long day and you can even nap in the reclining chair you will be in.

[Melij in reply to Cllady25]

Thank you Cllady 25

I did notice and read the related posts, most helpful. My care team has been amazing, even before treatment has begun, I have worked with a dietitian for almost a year now and the day after I found out treatment was going to happen, she called and went through an hour of things to help me maintain weight. 4 other team members have also called with info on Drugs, financial support, gas cards and parking passes….

Thank you for sharing your experience.

[Skyshark]

I started treatment Easter 2023 and joined the 50% that have an IRR on the first dose of Obinutuzumab

About 2 months later they issued a new protocol.

For those with ALC >25x10^9/L to reduce the possibility of IRR the first dose of Obinutuzumab had a slower initial rate. 6mg/hr for 1st hour, 12mg/hr for 2nd hour and then 24mg/hr.

This appears to have been cribbed from Manitoba, Canada! Maybe worth asking for this slower IV if you aren't in that province and have ALC>25x10^9/L.

cancercare.mb.ca/export/sit...

[garyherm]

there are so many very useful posts on here specific to your question, as mentioned already. The pre-first infusion treatment with several drugs to help ward off any reactions are important to read just so you can ask and have a conversation if they are not offered. I usually felt quite unwell after taking my daily venetclax and think I should have experimented more with changing the time of day I took them. I usually took them at lunch time and found a substantial meal helped. I know others on this forum took them at night and found it better. So I'd suggest if you do feel unwell after taking them just experiment a bit with time of day... Best wishes.

[Melij in reply to garyherm]

Thank you, we have not had any discussion of pre-infusion meds, I will add this to my list of questions! Also made note of time of day changes if need be for V.

I appreciate your reply

take care

[Discombulated]

Lynda, I feel you. I am commencing V+O on 31 March (3 days away) following my haematologist appointment this morning. My first CT since diagnosis (Oct 2023) showed my spleen now measures 19 cm and platelets are trending down. Haematologist was very matter of fact and confident in achieving a positive reaction to treatment. So, off to hospital I go. Nervous but feeling positive. Fingers crossed for trouble-free treatment for us both.

[BigBrownB in reply to Discombulated]

That was me last November! Spleen 20cm and gallbladder issues.

I started V&O on November 27th. Like many I had a reaction to the first treatment of Omnituzibab (I have pre meds before the treatment which includes steroids and antihistamine so ask about that).

After the initial phase of IV’s I started taking Venetoclax (building up to 400mg per day) along with monthly IV’s of O. I have my last IV next month and continue on the V till November.

I’m in remission’ and feeling fine. Spleen and gallbladder back to normal.

Lethargy and fatigue where my worse enemies throughout the treatment……rarely I felt nauseous. It’s okay to flop on the sofa and do nothing! (As frustrating as it is).

Good luck with your treatment. Hope all goes well!

[Melij in reply to Discombulated]

I have similar things going on enlarged spleen, etc….

I wish you well in your journey, take good care of your self ! Sending you positive thoughts.

[SEB0607]

For me this has been a miracle treatment, even though I didn’t have any symptoms of note before treatment or so I thought, other than getting breathless when exercising, my lymphocytes were 425k, haemoglobin 83 and spleen enlarged as were a number of lymph nodes. After the first two intense weeks of being very tired, I suddenly got back more energy than I have had in a long time (I hadn’t realised how the CLL had been impacting me), bloods quickly started to move into normal ranges and now at week 29 (out of 48) I have no sign of disease am back to running 10k easily and don’t even know I am on treatment, I just pop my pills each evening and now only have to go to hospital once every 8 weeks. I understand everyone’s journey is different but overall it seems people find this drug combo works well with few side effects, drink lots and lots of water and exercise as much as you can and most importantly keep a positive mindset. The first few weeks are intense with all the hospital visits but before you know it you are through that and can pretty much get back to normal living. I do still keep myself away from groups of people to avoid infection but will be back to full socialising real soon. Good luck on your journey and may your experience be as smooth as mine has been to date.

[BigBrownB]

My top tips…..

Take entertainment to the hospital! I’m generally there for 4-5hrs on treatment day! The ward is a busy but super friendly place…..bizarrely I think I’m going to miss it after my last round of O next month.

Take snacks!

I take an extra pillow and a little lap blanket for extra comfort!

Ask all the questions…..don’t worry how silly those questions may feel.

Everyone’s journey through treatment is different. Take every day as it comes, take the good days, and be kind to yourself on the not so good days xxx

[ShoulderCat]

I started my V+O treatment at the end of January. I'm now at the 400mg/day dose of Venetoclax and doing fine. Here are a few things that I learned along the way:

1) If you think you're having a reaction during your first infusion of Obinutuzumab, you probably are. Don't be like me and wait until you're sure you're having one before saying something. Tell your nurse right away.

2) If you develop Tumour Lysis Syndrome (I did), don't worry. The V+O combination has been around for a while and the protocol for dealing with TLS is well established. I spent the night in the hospital and was released the next day. Not a big deal.

3) Everyone is different and I can only speak for myself, but I felt pretty awful off the start. If you feel tired (you will), lie down. You might want to clear your agenda for the first couple of weeks. That said, the feeling crappy part ended pretty quickly.

4) If you feel nauseous, don't try to tough it out. Take your anti-nausea pills. They are great!

5) I received a little booklet in my welcome bag at the cancer centre for keeping track of my most basic blood numbers (WBC, neutrophils, platelets, hemoglobin, creatine, etc.). It's really worthwhile doing that. You're going to get a lot of blood tests. I ask the hospital pharmacy (that dispenses my Venetoclax) for a copy of my blood test results from the day before. Having a record written out will help you visualize your progress. It's encouraging!

6) Be patient. You will see improvements, but they take time. Like you, I am physically active and was often disappointed when my hemoglobin level didn't move. Well, it does improve and after just nine weeks, I am going to play tennis this weekend.

A lot of what I mention above (infusion reaction, TLS, feeling poorly, etc.) sound negative. But there are also positive things too. Incredibly caring medical staff, a superbly coordinated treatment process, and the love and support you'll receive from your entourage as they circle the wagons around you.

One last thing, it felt totally surrealistic when I turned the corner toward the cancer centre on my first infusion day. It felt like a mistake, that this was not my life. But that feeling is fading. CLL is indeed now part of my life and I'm getting used to that.

Good luck. You'll do great!

Michael

[Melij in reply to ShoulderCat]

Thanks for all of your suggestions Michael…

I too have felt like this was all a mistake and not my life! My brain is just not wanting to accept that this is a part of my existence…When I roll around the corner for my first treatment, my brain will catch up with my reality…

In the positive side, I look forward to playing tennis too….

Take good care of yourself !

[IRN83]

pay attention to your body. If you start itching, get cold, anything out of your normal, immediately notify the nurse. This could be an allergic reaction. I had several reactions. Be patient and watch the blood test results. I had to go back in after treatment for additional infusions because of high sodium levels. But V$O worked for me. Be patient and calm. Enjoy the time in the chair and relax.