Husband beginning V+O treatment for unmutated CLL - CLL Support

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Husband beginning V+O treatment for unmutated CLL

lisakc1 profile image
41 Replies

My husband will be beginning the combo Ventaclax and Obinutuzumab for unmutated CLL which will continue for 1 year. We would love any helpful advice about how this treatment affects most people, and how folks are coping in an unmasked COVID world. Are patients staying in a bubble for the entire year? Very concerned about his immunity being even more compromised and living in a world where people are donning their masks and treating COVID like a bad cold.

Also, we have no idea what to expect when treatment begins. He will have a 1-2 night hospital stay when he begins the Ventoclax, for 5 weeks, until the dosage reaches 400 mg.

Many thanks to you all!

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41 Replies
lankisterguy profile image
lankisterguyVolunteer

Hi lisakc1,

-

Your inquiry has been a very popular topic here.

You can see a few of the previous discussions by looking for the box on this page labeled:

Related Posts

*Treatment (V+O) update healthunlocked.com/cllsuppo...

*Update on V + O treatment healthunlocked.com/cllsuppo...

*Working while on treatment O&V healthunlocked.com/cllsuppo...

*Starting V & O treatment on Monday! healthunlocked.com/cllsuppo...

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If you want still more- please see my reply from 3 days ago: healthunlocked.com/cllsuppo...

The links at the bottom of that reply will take you to hundreds more discussions.

-

Len

SofiaDeo profile image
SofiaDeo

He will have a *minimum* 1-2 night stay weeks 1 and 2. Plan on more just in case, pack extra socks/underwear/reading material. I needed 4 nights my first week. Nothing serious, just, monitoring indicated I needed to stay/get IV fluids, etc. longer than originally anticipated. Never in any serious danger, the point is to be in the hospital *in case* one needs extra fluids, or a medicine, etc. so it never becomes something serious. There is a risk of TLS, and this hospitalization means *if* it even looks like it might occur/is starting, one is treated promptly before it *can* become serious.

Week 2, was the scheduled 2 days.

jijic profile image
jijic in reply to SofiaDeo

I didn't stay overnight once for V+O treatment! What country is this the norm?

SofiaDeo profile image
SofiaDeo in reply to jijic

It's determined by one's disease state/tumor load. The Venclexta package insert has the specifics: if ALC is above X, or nodes are larger than Y, 1-2 nights a week, the first two weeks, is prudent and recommended. Large quantities of CLL cells dying during exposure to even the small dose of V can start the Tumor Lysis Syndrome process. My CLL specialist said up front, regardless of ALC or node size, he prefers to hospitalize patients with enlarged spleens. As I had (22cm), and it did literally dump out with my abdomen shrinking to normal that first week. And my phosphorous was rising rapidly, and my kidney function numbers started to move, but staying hospitalized those extra 2 days with the extra hydration and switching to a low phosphorous diet while in hospital, kept things at bay. The numbers reversed, no kidney damage. I would not have been able to maintain that hydration level at home. Some people also see potassium and other electrolyte changes, which are easier to monitor and treat while in hospital.

jijic profile image
jijic in reply to SofiaDeo

Huh, I had an enlarged spleen, an extremely bulky neck, and my ALC was through the roof but they didn't hospitalize me. I think Germany is just different.

AussieNeil profile image
AussieNeilAdministrator in reply to jijic

Per, with my emphasis:

Considerations for TLS with VENCLEXTA (copied 30th July 2022)

venclextahcp.com/cll/dosing...

- VENCLEXTA can cause rapid reduction in tumor and thus poses a risk for tumor lysis syndrome (TLS) at initiation and during the ramp-up phase in all patients, and during reinitiation after dosage interruption (see dose modification and interruption information)

- Changes in blood chemistries consistent with TLS that require prompt management can occur as early as 6 to 8 hours following the first dose of VENCLEXTA and at each dose increase

- The risk of TLS is a continuum based on multiple factors, particularly reduced renal function (CLcr <80 mL/min) and tumor burden; splenomegaly may also increase the risk

- Consider all patient comorbidities before final determination of prophylaxis and monitoring schedule

- The risk of TLS may decrease as tumor size decreases

I would be very surprised if your specialist didn't go through these considerations before your venetoclax treatment. I'd recommend that you ask your specialist if this was done, because it was the unexpectedly sudden deaths of 3 people in an clinical trial which resulted in the trial being halted until the FDA were advised of the above new protocol, Don't let the deaths of those brave clinical trial volunteers be in vain.

Some protocols using venetoclax include a tumour debulking process prior to starting the venetoclax ramp-up. That might be a cycle or more of a BTK inhibitor, having rituximab or obinutuzumab infusion(s) beforehand, etc. The above assessment process is still recommended. Specialists don't want their patients dying from a heart attack due to excess potassium from rapid CLL apoptosis or damaged kidneys or liver complicating treatment continuation. I didn't need hospital admittance in Australia, because my tumour load (including an enlarged spleen) had been sufficiently debulked by acalabrutinib and 5 obinutuzumab infusions, the last concurrent with the start of venetoclax.

Neil

lisakc1 profile image
lisakc1 in reply to AussieNeil

Thank you Neil, his doctor is prescribing Allopurinol prior to the Ventaclax and he will be staying in the hospital for observation for the first few weeks of Ventaclax as dosages increase to 400 Mg. Fingers crossed that he sails through. Thank you so much for your reply!

jijic profile image
jijic in reply to AussieNeil

Ah, ok, I think the reason I wasn't kept in hospital was indeed because my tumor load was sufficiently debulked by the Obinutuzumab. That's my misunderstanding.

rafew profile image
rafew

Starting Venetclox I was in the hospital for 3-4 days each of the first 4 weeks to monitor my labs and treat for TLS on weeks 2&3 along with high potassium levels., and outpatient on the 5th. Still, the ramp-up went pretty smoothly. You’ll need to drink a lot of water. But once past the initial phase, there were few complications. I was also prescribed acyclovir as a preventative antivirus treatment. I don’t recall Venetclox as putting me at a higher risk for infections. I think the Acalabruitnib I currently take is higher risk. I hope the treatment goes well

CLLerinOz profile image
CLLerinOzAdministratorVolunteer

Hello Lisakc1,

Welcome to our community. You and your husband will get plenty of good information and support here. as well as evidence-based resources that will help you find out more about this very heterogeneous disease. I'm glad you've found us.

When you have time, you might wish to look at our Pinned Posts.

healthunlocked.com/cllsuppo...

One that is of particular interest to new members is:

healthunlocked.com/cllsuppo...

If time allows, it's a good idea to get any vaccinations up to date, before treatment starts. This pinned post will give you more information about that:

healthunlocked.com/cllsuppo...

We also have a pinned post that has important Covid-19 related information for CLL patients:

healthunlocked.com/cllsuppo...

There's a lot of reading there so take it a little at a time. I'll leave it to others to share their personal experiences of their Venetoclax and Obinutuzumab treatment (and I see you've already been pointed in the direction of some related posts) and of how they've negotiated their way in a Covid-19 world while undertaking treatment.

I wish your husband a smooth treatment journey and an excellent outcome. By the way, if he would like to join with an account of his own, he is very welcome to do so, too, but, rest assured, if he prefers to leave the research to you, you'll find plenty of company here.

cllady01 profile image
cllady01Former Volunteer

lisakc, Welcome!

I am one month away from having completed the V+O 1-year treatment. I can't give you a definitive comparison of my situation to your husbands because we are all different in degrees of our presentation of CLL.

However, I have had an uneventful run with this treatment--there was a small glitch at the infusion session (I had a short bout of nausea and feeling of diarrhea coming on.). It was short because the infusion team had told me to notify them if there was any problem. And when I did, I was surrounded by the team of nurses, almost immediately and they worked with great skilled team work to makes some adjustments to the fluids and within a few minutes I was fine and the infusion continued.

Never had another problem for the rest of the infusion days.

My CLL was diagnosed in 2001 and treatment began in 2021, and the reason for treatment was lowered neutrophils and platelets.

After the ramp-up of Venetoclax to 400 daily, my platelets and neuts were not happy and treatment was paused for a week or so to allow for their replenishing to a an acceptable level.

Returning to 400mg for a week was determined to not be helpful, so I was cut back to 200mg for a week and then paused again for a couple weeks when I started back at 200mg and have remained with all going well.

There have been others who have finished the treatment for the year on 200mg and have had good remissions. I am planning (as if) --make that hoping--that will be the case for me.

In regard to the unmasked world that is experiencing a return of COVID levels that are not getting enough attention in regard to the numbers and outcomes, I am still masking when indoors at friends or in public and will for as long as my immunity levels are low to nil. I have not eaten out since the beginning of COVID, and have no plans to do so. I have eaten take-out and will continue once in awhile.

I am soon to be 82 years old. My decision is based both on my being in treatment which does effect our immunity, and my age can only guarantee that my immunity apparatus have been aging also which gives me a double (if not more) chance of having little resistance to the old diseases, and possibly nil ability to produce a fighting group of cells to combat any new viruses.

I walk a hilly neighborhood every day the weather allows, and often twice a day. I do have neighbors with whom I visit outside as the weather permits and often there is one who walks with me. So, I am not deprived of conversation and chats with some of the nicest people you could ever meet.

I have figured out that the last few weeks of feeling nauseous is actually a need to eat my lunch sooner. I am feeling a bit of low energy now and then, but sleeping well and doing everything I can to avoid cleaning the house. Writing this has gotten me to almost bedtime, so the wash will have to be done tomorrow.

The world goes on as it will. I shall do the best I can to not hasten the inevitable.

Best wishes to your husband for a smooth V+O treatment.

lisakc1 profile image
lisakc1 in reply to cllady01

Thank you so much for your reply and support! Wishing you a deep remission and the best of days to come!

CycleWonder profile image
CycleWonder in reply to cllady01

I love your sense of humor and your determination to set and keep boundaries to avoid Covid. Yesterday my husband and son went to see the Blue Man Group at an inside venue. Everyone was masked. But I still did not feel comfortable going. I did my usual outdoor exercise instead. It was hot but fun.

Miu48 profile image
Miu48

Hi Lisakc1,I have 2 more Obinutuzumab infusions to go and will finish Venetoclax April 2023.

Here is my experience so far…

1st O infusion I experienced a minor reaction 15 minutes in of racing heart and slight throat tightening. Infusion was paused for about 20 minutes and I was given a further shot of steroids. We then continued the infusion and I haven’t had any problems since. In fact, I no longer have the steroids as my consultant deemed them unnecessary due to good tolerance of O. So now, I just have pre meds of paracetamol and antihistamine.

Prior to my first O infusion, I was told to pack a precautionary overnight bag. This was in case of severe reaction requiring overnight stay and monitoring.

When starting Venetoclax, the first few weeks of ramp up involved close monitoring of bloods. They’re looking out for any sign of TLS.

My ramp up was…..

Monday - in first thing for bloods and take V tablet.

Tuesday- take tablet at home and go for afternoon bloods

Wednesday - don’t take tablet until bloods are done and results are in

Rest of week - get on with it at home and start the same routine the following Monday.

Once I was up to full dose of V (400), I had a final blood check and now I just have bloods pre infusion day and pre seeing my consultant.

In terms of Venetoclax side effects, none to write home about. The odd day of constipation, probably caused by me failing to consume enough water. A couple of days of bad hip and leg pain which may or may not be linked to Venetoclax.

For me, this treatment has been very smooth sailing. For that, I feel very fortunate. I know some others have had more turbulent starts, so I am only speaking from my own experience.

As someone else has said, we are all different in terms of how we present, so there is no way to say how an individual will react/cope with the treatment. I am sure through this forum, you and your husband will gain much information about the O&V journey.

I wish your husband a smooth and trouble free treatment.

Best wishes

Emma x

Miu48 profile image
Miu48

Hi again

I forgot to comment on Covid…

I still wear a mask when in shops or on the train (I live in London). I recently went to a concert at the O2 and wore my mask for the duration, the same when I took my daughter to the theatre, mask on at all times.

I still haven’t sat inside a restaurant, outside tables only for me and any socialising I try and do outdoors.

Mother in law visiting is problematic for me (but then it always was 😁) because even on a warm sunny day, she’s still cold and wants to be in the house. I insist Covid tests are taken prior to her visiting, but of course that’s no guarantee.

Also, I have a 4.5 year old in school and a 16 month old. I worried to start with about how I would avoid the constant barrage of germs that circulate amongst this age group. In the end, I decided that there’s not an awful lot I can do about it other than continue to practice good hygiene.

So, in a nutshell. I remain very conscious of the presence of Covid and other viruses that are circulating but I’m living my life.

Best wishes

Emma x

lisakc1 profile image
lisakc1 in reply to Miu48

Thank you Emma for sharing your journey and I hope ours is as smooth! I applaud your diligence with masking and sticking to the Covid protocols, I know we are all Covid fatigued, our very best to you and your family and wishing you a deep and long lasting remission!

SofiaDeo profile image
SofiaDeo in reply to Miu48

FWIW, my parents/grandparents practiced "good hygiene habits" when I was a kid, and I never got measles, mumps, or chicken pox. We washed hands, left shoes at the door, etc. But I also was never fond of rough housing play, which involves more contact.

stevesmith1964 profile image
stevesmith1964

HiWas diagnosed stage 4 unmutated 100% infiltration in Nov 2020. Went straight to 6 cycles of Obinutuzumab after a 2 unit transfusion, supported by Ibrutinib I was in full umrd in 240 days. Had covid 3 times once at cycle 3 and 1 Oct 2021 and then Jan 2022

Since Jan 2022 I live a full pre CLL and pre Covid lifestyle. Good luck

OmBewok profile image
OmBewok

Dear Lisakc1,

Of course everyone’s experience is different, so I won’t offer any advice. But my experience has been very positive. I’m now 9 months into my year of Obinutuzumab & Venetoclax treatment, and couldn’t be happier.

Prior to commencement, I was dreading the O infusions as I don’t like injections. That worry soon passed as I got used to the routine of the procedures. I did have some problems during the first week of Obinutuzumab with neutropenia and ended up in hospital for a few nights. Since then, it has gone very smoothly. I adjusted quickly to the O infusions, and gained a sense of progress ticking them off my calendar. I felt at ease spending the hours in the Chemo ward at the hospital, getting lots of attention from the wonderful nursing staff, while I watched videos on my laptop!

The introduction of V was managed very carefully by my treatment team. I did not need any hospital stays and always felt well-advised and looked after. It did take some concentration to make sure I followed instructions carefully as the medication increased. The frequent initial blood tests were a bit tiresome, but that phase was relatively short, and I settled into the medication well.

After the neutropenia during the first couple of weeks I’ve had virtually no adverse reactions (perhaps some constipation, generally solved by adding prunes to my regular diet now). My blood results quickly returned to normal, virtually within the first fortnight. Now, they are reassuringly 'normal'.

The Covid pandemic did make me more anxious. I’m fully vaccinated, but behave as if I’m not. I continue to follow medical advice: self-isolate, go masked if in public, don’t eat inside cafes, etc etc. I 'paused' attending church or any indoor events. Even dining at a friend's house was something I'd weigh up very carefully, preferring very small groups with known vaccination status. However, I’m scheduled to get Evusheld injections on Monday so hopefully after that I might feel I’m able to relax a bit as I do miss socialising.

I still have three months on V so I suppose anything could happen. But at this point in time, I am delighted with my decision to opt for this particular treatment, and I am very optimistic about a remission without needing daily medication.

I wish you and your husband all the very best for his treatment. I hope it goes very smoothly and successfully. As my specialist told me a couple of weeks before I commenced treatment, 'I don't think it will be nearly as concerning as it might seem now'.

Best wishes,

Om

GerryPL profile image
GerryPL

Finished my 12 months treatment three months ago, worked really well clearing my lymph nodes. If you are not careful it can seem a bit overwhelming and on this site you will find a lot of very very good advice. But as someone who likes to keep things simple. I would summarise:

Two drugs Obinutuzumab (given as an infusion in hospital) ; Ventaclax tablets to be taken at home. Both are powerful targeted drugs and so they will be administered in small doses to start with and gradually ramped up to the full dose.

They advise for the first doses of the infusion you stay in hospital for a short time just to monitor if there are any side effects. The main concern is the breakdown products of the treated CLL may cause damage.

The only other thing to say is drink plenty of water as advised in his notes, that plus they will probably give him some tablets, acyclovir, just in case with his weakened immune system he develops shingles.

I would add I stopped drinking any alcohol during my treatment and significantly increased my exercise regime. He'll be fine just tell him to listen to the instructions and turn up for appointments.

lisakc1 profile image
lisakc1 in reply to GerryPL

He's had the shingles vaccine, but guessing that ALL vaccinations should be repeated AFTER CLL Treatment?

GerryPL profile image
GerryPL in reply to lisakc1

In my case my haematologist said not necessary to repeat most vaccines but best just to ask. The old shingles vaccine was live so not indicated for CLL , the new one, Shingrix, is much more effective and not a live vaccine.

lisakc1 profile image
lisakc1 in reply to GerryPL

He had the Shingrix, but its a good question for everybody's doctors.. if your immune system has been "born again" it makes sense that vaccines would need to be repeated.

thompsonellen profile image
thompsonellen

I had a similar trial. First day of obin I felt terrible for 30 minutes. I was bored during my hospital stays, but they were only two days each. Otherwise, I just felt better and better. For me, it's not realistic to be in a bubble (I'm in a different treatment) but it's a very personal choice and it seems like there is a big surge now where I live based on so many people I know having COVID, not the official numbers (I'm Philadelphia USA). Good luck.

Poodle2 profile image
Poodle2

Hi Lisakc1,

I started O+V at the beginning of July. You can read my posts to see what it's been like for me so far. It hasn't been straightforward but I think it's more to do with my "chronic" ongoing infections I have had since mid March rather than the treatment itself. The fact that all my blood numbers were quite low to begin with didn't make it any easier on my body either.

I am starting to feel better though and my nodes are literally melting away, my 21cm spleen shrank to its normal size within the first 10 days. My lymphocytes reduced very dramatically, my Hb is holding and my platelets have started to recover, all signs that my bone marrow is starting to function again. My low neutrophils and the infections are making a bit bumpy but I'm trying not to complain 🙂

As everyone else has said, it's very individual and it has probably more to do with your current bone marrow infiltration and how good/close to normal/bad your blood numbers are when you begin. It also depends on what the state of your immune system is, you can have lower neutrophil counts but they might be functioning well.

I think that all in all, even with any possible set backs, your husband will start feeling the benefits of the treatment literally after the first infusion and definitely by the end of cycle one...and that is what matters. It is unbelievable how quickly the drugs work.

By the way - I have three small kids so infections are a worry, I pick up everything they bring, there is not much I can do, we have to be realistic. It's important to follow your team's advice on infection prevention, control and management.

All the best.

Petra ❤

spi3 profile image
spi3

My husband is on a trial study venetoclax + obinutuzumab and acalabrutinib and is doing well - he had long day stays in the hospital when starting Venetoclax. When they started him on obinutuzumab, they prepared his body with Tylenol first. For the venetoclax they started him with 50 mg and the next week up to 100mg. He is up to 400mg and doing great .

ViPOR profile image
ViPOR

Hi, even though I have aggressive Follicular that had transformed into DLBCL, I have been on a lot of the same meds as CLL patients. I did have an Ibrutinib trial. Then CAR T for my Aggressive FNHL. The CAR T in 2019 gave me only a 6 month CR. Then had a VIPOR immune therapy trial at NIH that has given me a 2 year CR presently. So, it did include Venetoclax, Ibrutinib, prednisone, Obintuzimab, and Revlimid. My dosage of the Venetoclax was gradually increased up to 800 mg. So, that was a lot. And my Obintuzimab was given IV. I tolerated the Obintuzimab IV fine. It is a bit harder to tell you exactly what med caused what side effect since I had so many meds but my main side effect was diarrhea. I did have high B/P but that was caused by the prednisone and nothing else. Prednisone does that to me. So, if you get any diarrhea, just keep hydrated and keep drinking so as to protect your kidneys .I also wear a mask as does husband when we go out to sore, etc. and I also get IVIG every other month to protect against bacterial infections. I also take Valtrex ( acyclovir)to try to protect against viral infections since I got shingles after CAR T. I have had 4 COVID vaccine shots, so am fully vaccines though don’t think they are totally working on my immune compromised system. But have not gotten COVID so that is a plus! My CAR T wiped my B cells and thus left me immunecompromised. Prayers and Best wishes for your new therapy and for your HEALTH and for a CR!

Bulwinkle profile image
Bulwinkle

Hello lisakc1, I am a 60 year old male and I live in the US near Boston. I have been wait and watch since 2012 and started Obinutusimab and then Venetoclax about 2 months later last December (was my Christmas present). We all have different and similar experiences I think and the fact that the treatments have come a long way and being highly targeted makes us quite lucky these days. You will get a lot of good information in here and it definitely helps to not feel alone and have a good source of support. My start with infusion had the normal bumps in the road like infusion reaction at the first dose and the rest of the obinutusamab infusion went without incident. I did always feel a bit drained for a few days but overall mu body tolerated it quite well. I have had more ups and downs with venetoclax AKA venclexta and currently am stopped about halfway through my year due to a nasty infection. I likely got the infection because my immunities are low. I expect to start back on at a lower dose as things clear up. the venetatoclax does not agree with my digestive system and I got a lot of nausea as well. I countered that with Zofran and changing the schedule I took it on but have overall just had difficulties with that part of the treatment. It has been rather challenging for me unfortunately but everybody is different and the Doctors and the company that represents the drug MFG have been there all along being as helpful as they can. I hope your husband has good results and best wishes to him!

Hi lisakc1

Wanted to say hello to you and your husband. Thank you for sharing your journey and wishing your husband and you much health & peace of mind to come. I will say many prayers. The new treatments are quite amazing from everything our specialist (and forum friends) discuss!

Plenty of great, compassionate advice here. Don't know what I would do without this lovely forum.

As for covid, we have been in for the entire 2 years ish except for select events. My husband has virtual appts. w/specialist & his primary makes "house calls". Occasional health emergency (root canal for me), curbside pickup for important items we can't get on line. Long drives, getting gas/propane. No casinos, restauraunts etc. We do have a bbq here n there w/my stepson & Grandson only. Most recently, hubby went with Grandson to buy a car. Mostly outdoor events for us~

My father in law (82) & husband's friend (52) passed from covid (prior to vaccines being available, 1 older, 1 younger). Psychologically very hard hard on my husband. It's our preference to lay low although we realize it will probably be here long term & we'll eventually get it. We stay busy enough, plenty of hobbies & projects.

Thinking of you & have faith all will be well!!

Cookie

jijic profile image
jijic

Hi - I'm mutated (and in MRD- remission) but I had V+O and it was just so easy! The first day of Obinutuzumab was difficult for me (fever, sweats) but the quickness with which my lymph nodes stopped swelling and I started gaining weight and platelets back was nothing short of a miracle.

Unlike others in this thread, I didn't have any overnight stays. I guess that's a US thing; here in Germany we just go into a regular doctor's office for treatment. Oh, and yes to drinking a LOT of water!

Re: COVID, I've had it (post-treatment) and it was mild. I did have medium-length COVID (also mild, mostly fatigue) but I've had two checkups since and nothing seems out of sorts. I don't wish it on anyone of course and I was luckyish to have Omicron, but I think living in a bubble isn't the answer - masks are. Get some FFP3s, and wear them all the time indoors.

jijic profile image
jijic in reply to jijic

Oh and all I took was allopurinol and a 3x/weekly antibiotic. None of the other stuff folks here have posted.

SofiaDeo profile image
SofiaDeo in reply to jijic

In the US, allopurinol is also a recommended part of the protocol. But since it doesn't affect CLL directly, it's generally not considered a "CLL treatment". Depending on the patient and their history plus immune status, a doc may order anti-infection prophylaxis meds if one isn't already on them. One early treatment, I was on antibiotic, anti fungal, and antiviral prophylacis. I continue on antiviral since that therapy, I seem to still get shingles or herpes simplex prodroming if not actual breakouts. So some of us here take some of these drugs year round, which aren't considered part of our "CLL treatment" per se. You were given the antibiotic for "infection prevention", not "CLL treatment". And the allopurinol is also "preventative" versus a "treatment" that actually affects the CLL cells.

lisakc1 profile image
lisakc1 in reply to SofiaDeo

What does the allopurinol do exactly?

Poodle2 profile image
Poodle2 in reply to lisakc1

In simple terms it helps your kidneys to get rid off high levels of uric acid that can be produced as your body is getting rid off a high number of dead cells (B cells)...the reduction in your lymphocytes can be very dramatic - in my case it went down from 150 000 to 8.9 after the first full dose of Obinutuzumab. This is my understanding, hopefully it makes sense. (It helps to manage and minimise the risk of Tumor Lysis Syndrome - you can look that up.)

SofiaDeo profile image
SofiaDeo in reply to Poodle2

Allopurinol stops the enzyme "xanthine oxidase" from breaking down "purines" (our other DNA parts are pyrimidines) of the dead CLL cells into uric acid. Some people are also warned to cut back on certain foods, since food proteins contain purines, some more than others. There's also evidence that *sugar* can also increase uric acid levels. I am reading that the top 4 to avoid are organ meats, alcohol (especially beer), seafood, and sweetened beverages.

Excess uric acid can deposit in the kidneys, in joints, and other places.

Hiker13 profile image
Hiker13

Wonderful medications! I completed the year June 20th of this year. No major problems at all. I was able to stay active the whole time, even continued my hiking. I also had the hospital stays, but had no problems. Prayers coming your way for a safe journey thru the treatment.

Ladylin151 profile image
Ladylin151

Truly people have different experiences. That said, I will add ours here and may yours be very similar! My hubby is the one with Cll/Sll, he is 61 and has been diagnosed ( unmutated) for 6 years. He began treatment at the end of May with many enlarged lymph nodes that were not all that noticeable but starting to cause issues with breathing and hearing. He also had internal ones, with some b symptoms starting to become annoying; he has never had blood numbers outside of "normal". He started with 2 infusion days the first week and one each week for a month. Then started the V and the ramping up in dose weekly with labs done at every ramp up. (He is at maximum dose and will stay there until next May, he has three more O infusions going forward). He was never hospitalized at all and has experienced (almost) zero side effects of any kind. After an education session that took 4 hours or so, the first infusion day was 8 hours as was the second the next day. Each infusion appointment since then has been about 5 hours and lab days take around 1-2 hours which is mostly waiting and paperwork. He has only missed one day of work for feeling ill and has worked from home on his infusion days. We saw results the VERY FIRST DAY and he has more energy and "health" today than he has had for at least 2 years! He saw the hematologist yesterday and all palpable lymph nodes have receded to 1cm or less. They will do a CT scan next year to understand his results.

To explain the one missed day of work and "only" side effect: He lost his appetite but felt good enough to go full force at work, skipping lunch, not drinking the prescribed water and working late. The next day he slept about 20 hours, was lethargic and still didn't eat and drink. When he was finally threatened by his extremely mean wife, he changed his self-care tactics and rebounded very nicely. ;-) The water-drinking is EXTREMELY important!

We live in a small town, his job is mostly "socially distanced" except for meetings but he is "essential" and has work onsite through out. We go to restaurants and see our family un-masked. Hubby has never shown signs of a compromised immune system and did have covid last Christmas ( His doctor immediately sent him for monoclonal antibodies and he felt well in about 5 days). His doctor ordered Evusheld now during treatment, as a precaution, but has not suggested any other measures as necessary. I'm sure other patients have other concerns, this is only our experience. May you have an equally uneventful course of treatment!

lisakc1 profile image
lisakc1 in reply to Ladylin151

My husband also got COVID last Christmas. I requested Monoclonal antibodies but with no luck, His covid morphed into a bad case of bronchitis for 3-4 weeks. He got the 2nd booster in March, now we had planned a family trip to a wedding, but we will most likely stay home as his numbers are high, resistance is low and I don't want compromise his treatment start.Thank you so much for sharing your journey! Our husbands seem very similar LOL!

DanBro1 profile image
DanBro1

I completed my one year protocol of Obinutuzumab and Venclexta March 1st. I had zero issues for the year. HOWEVER, my immune system's antibodies were wiped out for the year. I had FOUR Moderna Covid shots and four weeks after each shot I tested "No detectable antibodies". Yes, your husband needs to be in a bubble for a year. Wear a mask, avoid indoor crowds, and wash hands frequently. Even now, my big thrill is to go to Walmart or HEB grocery in early morning hours when few customers are in the store. I also had Evusheld injections four months ago and will be tested for antibodies next month (August). In closing, let me give you some good news...... O+V really works. At the end of my treatment regimen, my blood tests showed no detectable CLL cells! All the best to you and your husband in this no-fun journey.

lisakc1 profile image
lisakc1

Thank you so much, we were planning to go to a wedding in a couple of weeks BEFORE treatment but I'm concerned since his last booster was 6 mos ago that he may contract COVID again..(he got omicron for 4 weeks in Jan) and further delay and complicate treatment, also we haven't been able to travel in years and that in itself is depressing. Got to look on the bright side!

Poodle2 profile image
Poodle2

theoptimistduo this was discussed recently (O+V), see above.

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