Lifestyle

[Guinness4822]

Think I'll be on O and V treatment from next week. A few questions for those more in the know than me. Can I still work? Do I need to give up alcohol? I also like to exercise.

[GMa27]

During my chemo treatment my doc said no alcohol or raw fish. Alcohol can interfere with any medication. It's on every bottle as a warning. I would not want anything to interfere with my treatment. I had 3 months of chemo. I didn't drink for 6 months after cuz it still works in our bodies. I actually didn't like the taste of alcohol for 2 years after treatment. Good question to ask your doctors. Good luck!

[Guinness4822 in reply to GMa27]

Thanks 👍

[cajunjeff]

These are good questions for your doctor. My guess would be that insofar as working, so long as you are not having bad side effects or are neutropenic, that you can work normally. I would probably take the day off work for your infusion therapy, maybe for your first infusion just plan on taking off the day off and the day after your infusion. If you feel fine the day after your first infusion, maybe just take the one day off for future infusions.

I would be surprised if your doctor restricts you on any exercise, other than perhaps taking it easy on your infusion days.

I took venetoclax for a few months without restrictions on drinking alcohol, but this is definitely a question best asked of your doc. Good luck with your therapy.

[Guinness4822 in reply to cajunjeff]

Thanks Jeff.

[Claret13]

I found the first month of treatment quite challenging and disruptive so ended up taking sick leave throughout that period. I have a very supportive employer. Everyone is different though. I suggest being prepared for feeling out of sorts/unwell and to listen to your body. I didn’t drink alcohol throughout my treatment, by personal choice rather than clinical instruction. I felt why give your body something else to cope with that it doesn’t need. I wasn’t a big drinker and have drunk very little since, one year off treatment next month.

[SurfSurf]

Hi Guinness4822-

Am doing the 20-044 V+O trial for fixed duration “fit” individuals. I took 3 month leave of absence and very glad I did. Am currently at the beginning of cycle 3.

Part of my journey:

I found the 5 week veneteclax rampup challenging. I was high risk TLS. Dr gave me a choice of 2-3 nights per week in hospital (Tues wed Thur) for monitoring or 12-14 hour days on 5 Wednesdays followed by early Thursday. I chose the long days as I live close to the Dr.

If high Risk TLS there is the obin infusion plus hydration plus labs every 2 hours to ensure you’re not having tumor lysis.

I had neutropenia 3x thus they had me in for labs Sundays and Mondays, sometimes Fridays.

I met some people on the infusion floor who did work the whole time and come and go without extra labs etc. For my case, no way I could work, so definitely on a case by case basis.

I hope the above helped - wish I had known about this page a long time ago, my Doctor doesn’t give too much indepth info, this site has been a lifesaver.

[Skyshark in reply to SurfSurf]

Wish my hospital had been able to plan it's way out of a wet paper bag and got me in the night before. They got me in Wednesdays way too late for a 6am tablet, 8pm and then fed me 3 doses in 36 hours. Still a 3 day 2 night stay but.. did the 1st day blood tests on day 2 as well. Then they did again even though the ward doctor had told me they would get me in on Tuesday, except this time the tablet was early afternoon an hour before the Obin IV, 3 doses in 40 hours and yet more day 2 blood tests.

[SurfSurf in reply to Skyshark]

Hi Skyshack— apologies I wasn’t clear in my post— I refused the hospital! So I was committed for labs at 6:45am every Wed followed by trial nurse, my dr meeting and finally to obin iv. I was there till 8-9 pm every Wed w obin and hydration and labs every 2 hours for the entire time, and had to be back 6:45 am the next day Thursday. They didn’t do picc line.

You ended up without TLS I hope. How are you doing now, side effects?

[Skyshark in reply to SurfSurf]

I understood you had first doses as an outpatient even though you were high risk.

No TLS. No side effects.

I wasn't given a no hospital option, the day care doesn't open until 9am stops at about 7 pm. On week 3-5 on Venetoclax ramp-up after 6-8 hour blood test in outpatients they were having difficulty finding a doctor at 5:30pm to say the blood test was OK and that I could go home to come back for next mornings blood test. That took so long that I was taking 2nd dose at midday.

Both our hospitals start treatment on Wednesday. For Venetoclax ramp up yours had a plan. They would have had you there on Tuesday night so the tablets could be given with breakfast on Wednesday. Mine appeared to have no plan at all.

[may04cll in reply to SurfSurf]

Just how many cycles of V ?

[SurfSurf in reply to may04cll]

Hi may04cll, for the MSK Trial 20-044, from what I see on the schedule they gave, no. of V cycles (treatment periods) looks to be dependent on the patient's response rate. V is given daily cycles 3-9, 3-12, or continues 13-24. That's if I'm reading the study calendar correctly, but I think this is correct.

[may04cll in reply to SurfSurf]

thanks for the reply and participating in the trial . I meant to type O .

[Skyshark]

Good luck, it's quite intense, especially if "high risk". Hope you breeze it like I did, just an IRR on day one that extended the IV from 4 hours to 8 hours.

Probably best to give up booze as hydration is very important. When on Allopurinol drink even more than the Venetoclax booklet says, 2.5L a day.

If low risk TLS or at low end of medium risk TLS and don't have PICC line installed in week 2, you will cut out 6 of those days.

V+O first 8 weeks "high risk" TLS

[Big_Dee]

Hello Guinness4822

My H/O said no alcohol during my V&O treatment. Blessings.

[CLLBGone]

I cmpltd the O&V fixed duration treatment Dec 2020 and thankfully it was a very smooth ride and my CBC numbers continue to look very good.

The most difficult thing was giving up grapefruit for the period I was treated. Apparently Venetoclax and Grapefruit dont play well together.

I walked and exercised everyday, and did all my "normal" activities.

However,

Infusion day will eat up a big chunk of your day especially when you start receiving the O drip. So on those days I didnt plan on doing much

I didnt drink alcohol while I underwent treatment. And as others have said, concerning the booze, see what your doc suggests you do (or dont do).

Good luck and wishing you a smooth ride . . . . . .

[Rovering_Rose]

I also missed grapefruit. I did everything outpatient. I did workout the whole time. I did take the infusion days off. At the start of treatment, I did easier workouts due to the fatigue. I suggest you workout before the infusion. You may not be up to exercising after. Plus, it made me feel better before the infusion. Except for the first infusion, I tried to get up and move around.

[Gradyboy]

I am currently on the O&V treatment. Finished infusions last March and will complete the Venclexta in November. The only work I missed so far is the infusion days. I felt fine to work they just took four hours to complete. I am not much of a drinker but I have had a glass of wine here and there. I didn't during the infusions but I don't believe it's a problem if you want to have a drink. Ask your doctor to be sure. Best of luck to you. I can tell you after the first month this treatment has been a breeze so far. Once you get past the first month of infusions it is only every 28 days so not so time consuming. And I exercise whenever I feel like. I had a very enlarged spleen so waited on the exercise until it shrunk after I started the treatment. I walked but that was about it until the Dr said no restrictions on exercise. I believe it took about a month after starting.

[may04cll in reply to Gradyboy]

How many cycles of V did you have? It seems cycles may vary with patients and or Dr's.

[Gradyboy in reply to may04cll]

I had 6 cycles but the first cycle was I believe four infusions. Then once every 28 days for remaining cycles. I started Venclexta at the end of first cycle. I felt like it went by quickly. I had had to have a blood draw within 2 days prior to each infusion. Some people have said they had multiple blood draws I had blood draws 1xwwek during infusions now 1x month. I had all my infusions at the Cancer center that has a sky bridge to the hospital,.

[Gradyboy in reply to may04cll]

I'm sorry you asked about V and I answered about the infusions. I am under the impression 12 cycles of V. I started end of November and it says on my chart end date is 12/08/23. This is first treatment for me.

[may04cll in reply to Gradyboy]

Thanks for your reply . I did mean O infusions . My Bad.

[Skyshark in reply to may04cll]

You should have 9 infusions of O.

Cycle 1, days 1, 2, 8, 15. Then day 1 for next 5 cycles. Days 1 and 2 of cycle 1 are are split dose of 100mg/900mg, all the others are 1000mg.

There are 10 & "1/2" cycles of V, duration is 11 cycles and a week but reduced dose at start to ramp-up. 5 week ramp up of V starts week 3 of cycle 1 (day 22), 20mg, 50mg, 100mg, 200mg, 400mg at last week of cycle 2, then 10 cycles at full 400mg dose.

[Wendy328]

My Dr said no alcohol on V & O. For me it was the amount of time treatment took not necessarily feeling poorly that you would have to take some time off work. In the beginning it required going for multiple blood tests sometimes twice a day, everyother day. This is to closely monitor your blood levels. Twice I had to be hospitalized for three days each time. Once you are on a once a month schedule it is fine. You would just need the day off on the day you have treatment. I have 4 treatments left. Very pleased with the results, as is my Dr. Several small side affects, but manageable.

[OWLS26]

No problems for me and I have a couple of pints a day, you have to continue to enjoy life !