Treatment

[Coldplaybest]

I am due to start CLL targeted treatment in late October. Can anyone please tell me of their experiences please?

[AussieNeil Partner Administrator]

Do you know what particular treatment?

Neil

[uptheirons in reply to AussieNeil]

Hi Neil, best of luck with the treatment.

I was on Venetoclax and Ibrutinib, though had to be taken off the Ibrutinib as it was causing afib problems.

But I’m CLL clear now and it will be 2years in December. I was on 3 monthly visit to the clinic for the 1st year and half. I’ve my 1st 6 monthly visit next month (October). I feel fine and hopefully all good with the blood tests next month.

Once again best of luck with your treatment.

David 👍

[Haggar in reply to uptheirons]

That’s great news. Hope you get good results. It’s amazing what a tablet can do. So many new options . Good Luck

[Coldplaybest]

Yes. It's is Ventoclax and Obinuzumab. I hope I have spelt the. correctly? John

[AussieNeil Partner Administrator in reply to Coldplaybest]

John, Venetoclax + obinutuzumab is a very effective fixed term, combination targeted (that is 'non-chemo' treatment). We have over 3,000 posts mentioning it, with many members sharing their experiences. See healthunlocked.com/cllsuppo...

If you edit your title to include the treatment name and share your post with just this community healthunlocked.com/cllsuppo... you'll get more replies.

I finished venetoclax + obinutuzumab + acalabrutinib treatment over 3 years ago and my blood counts are the healthiest they've been in nearly 20 years.

Neil

[Coldplaybest in reply to AussieNeil]

Thankyou Neil. I am still trying to get my head around the use of this forum but I will give it a go as it will help me alot.

[AussieNeil Partner Administrator in reply to Coldplaybest]

There is a wealth of information about living long and well with CLL in our Pinned Post section here: healthunlocked.com/cllsuppo...

That section includes this post on how to navigate the HealthUnlocked site healthunlocked.com/cllsuppo...

Neil

[Sushibruno in reply to AussieNeil]

Nice Neil, are you still under treatment?

[AussieNeil Partner Administrator in reply to Sushibruno]

CLL treatment free drug holiday for over three and a half years

[Sushibruno in reply to AussieNeil]

Congrats Neil!

[BMFCDRW in reply to AussieNeil]

Hello AussieNeil i'm doing the same treatment. Finished Obinu and now i'm on Venetoclax only. Do you remember any special side effects?

[AussieNeil Partner Administrator in reply to BMFCDRW]

Side effects are very individual - with some of us not having any side effects. Other than increased tiredness for a day after each infusion, I certainly didn't have any from the obinutuzumab after the infusion reaction during my first infusion.

My treatment was delayed by a couple of months for reasons beyond my control, so I ended up in hospital for 5 weeks, a week after starting on acalabrutinib. I expect that might have been avoided if I had been able to begin treatment earlier. I've documented my experiences in my profile. My platelets dropped very low (down to 29), so I initially had increased bruising, but gradually that was replaced by petechiae - usually in places where my clothes pressed against my skin. I had some nausea initially, but that improved. I suspect unpredictable diarrhoea a few times a week, was from venetoclax and that took about 3 months to resolve after I finished treatment. The only other problem I experienced of note, was hip pain that made it hard at times to sit and stand in the mornings.

I still consider treatment well worth going through, given I achieved uMRD and having my CLL well in control, 4 years after reaching uMRD.

Later generation versions of targeted therapies are better still, side effect and adverse event wise.

Neil

[Gradyboy in reply to Coldplaybest]

I did the V&O treatment started in October of 2022. Never had any real issues. I am hitting the two year mark and feeling great. The only work I missed was the day of infusions. One recommendation is take food with you on infusion days and when you start the Venclexta take it with evening meal. I ate for a bit then popped my pills and finished eating. Never had any stomach issues doing that. It was recommended to me by many others. Good luck with your treatment and don't sweat it. It's a really good treatment and very effective.

[Coldplaybest in reply to Gradyboy]

Thankyou. That is really worth knowing. I will follow that advice. John

[peghip]

2018 I had venetoclax with retuximab, due to my 17p deletion my consultant has kept me on the venetoclax, well beyond the normal 2yrs. Only issue I've had is diarrhoea with some foods. Used to take in the morning switched to evening and the issue is generally resolved. No other side effets

[BaseballGardener]

You have certainly come to the right forum. I see you have gotten lots of good advice, especially from the 'experts' on this website, like Aussie Neil. The one thing I can add is to please become an expert yourself concerning your hematology reports. You will be monitored for WBC, RBC, hematocrit, platelet count, etc. Just reducing WBC is not sufficient, the goal is to maintain healthy concentrations of the many components of blood and coagulation. You need to become aware of your changing body and make the appropriate adjustments. For example, if you cut yourself, the length of time it might take to stop the bleeding may become longer. My very best wishes on your new journey.

[Nucleusman]

As you don’t specify treatment difficult to comment. But all latest treatments work. I was given Acalabrutinib (Calquence) 2 years later in remission

[Coldplaybest in reply to Nucleusman]

Yes. My treatment is planned to be O+V starting in late October. John

[Smakwater]

Coldplaybest,

I started O+V in a clinical trial October 2018 and discontinued treatment having reached uMrd December 2019. The Obinutuzumab is an infusion, and it is started before the Venclexta which is a pill.

Dosing Schedule - venclexta.com/previously-un...

Most people tolerate the drug combination well, however, I had one short experience with riggers early in the obinutuzumab infusion. The infusion nurse lowered the administration rate and I stabilized. Other than moderate diarrhea and some arthralgia, the treatment side affect profile was very moderate. I was able to navigate to and from the infusions on my own and the Venclexta is taken at home. You can expect to be up a lot at night mostly because of having to urinate often. Being awake will make the arthralgia more noticeable.

During the infusion it is advisable to bring a book or laptop, something to eat and water to stay hydrated. It is very important to hydrate with treatment and it is to your advantage to begin this practice even days before staring the treatment. The average person should drink 70-80 ounces of water daily. It is also advisable to eat a proper diet and exercise appropriate to your individual health profile. The hydration should also match your activity and environment, E.g, adjust for extreme temperature change and activity level. One measure for hydration is in the creatinine test on the CBC.

Re Hydration - patientpower.info/navigatin...

My 11 month Summary - healthunlocked.com/cllsuppo...

All the best,

JM

[Coldplaybest in reply to Smakwater]

I'm grateful for your summary. Many thanks indeed. John

[skipro]

Hi

Wow, If Coldplay refers to the band, I am their biggest fan!!!!

I used to want to be like Chris Martin in his live shows!!!!!

Before I go into the hard details, I have to say that I am grateful for all the new treatments that have allowed me to outlive my original life expectancy. I have found ways to become fulfilled, happy, active and functioning despite the challenges.

I am also very grateful for this Society that has been the source of so much comfort, support and advice!!!!!!

I had FCR (chemo immunotherapy) 2018. There were roughly 5 minimally symptomatic days and 2 severe days and back to full activity in between the 28 day cycles.

I started V + O March 2023. I had originally wanted the fixed duration treatment but had changed my mind due to the side effects profile after 4 years of neutropenia followed by Covid pandemic. But I was so ill from the CLL that I just went with what the doctor set up.

After Obin test dose I woke up middle of night with chest pain for an hour followed by rapid heart rate. Next day I went in for the remainder of the infusion, took 2 steps out of car and blacked out, fell, hit my head and had lots of cuts,, bumps and bruises.

No one had an explanation for this. I remained with a rapid heart rate for 6 weeks.

For the rest of the treatment, I had nausea, well controlled with meds.

I had horrible diarrhea spells inter mingled with constipation which was hard on hemrrhoids.

I had a lot of fatigue, muscle and back pain the whole time.

I contracted multiple virus infections and secondary bacterial infections, as my spouse was NOT supportive of masking.

I was devastated to learn that the treatment was for 2 years instead of 1 because I was a relapsed case.

I write for the CLL Society and knew about treating to MRD 6 as an endpoint. Sadly, because there were no remaining specimens before treatment, to send to Clonoseq, I could not test to MRD 6.

At 13 months I had blood and marrow tested to MRD4 BM which showed 4/10,000 CLL cells per wbc. NOT quite less than 1/1,000,000 or MRD 6. Blood was 0 to a level of detection of 4/100,000.

I was given the option to stop because it was a decent response and I hated the side effects but we opted to re test in 5 months.

Unfortunately, the numbers increase, albeit slightly ( from 4 to 8/10,000) and I had hypocellular marrow which could lead to MDS and other things so I stopped.

I feel a lot better and labs are still good.

Debating about looking into a "mop up" study to see if we can wipe bite the bullet and wipe out whats left, but am leaning towards a break in treatment and side effects as long as possible (?2, 3, 4 years compared to 7-8 if I get MRD 6).

Actually, after 6 years of this and a NON-supportive wife and loneliness, I am really needing this break in the action.

I must say, I am grateful to be alive and well because in 2011, based on staging, I was given 2-4 years to live. It was then modified to 8-10 years but here I still am going strong at 13 years.

God bless you and Good luck!!

Skipro

[OutontheEbike]

Coldplaybest

How are you feeling now? I'm due to start O+V in 9 days and generally feel rubbish, it's almost like since I got my treatment date my body has given in. I have a manual job and in the last 3 weeks I'm struggling to do half days, I also struggle to get out on my bike.

Those of you who've had treatment, were you able to get back to your former fitness levels?

Darren

[Coldplaybest in reply to OutontheEbike]

Yes. I would like the answer to regaining fitness levels too. Last year I cycled 700kms to Budapest. Now I haven't got the energy to get on my bike. Fitness is steadily dropping. John