IV v oral venetoclax and ibrutinib : Hello all... - CLL Support

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IV v oral venetoclax and ibrutinib

Noelnoel profile image
54 Replies

Hello all

At his appt yesterday husband was told that chemo will begin in six weeks. He has the option of IV or oral treatment with venetoclax and ibrutinib

Haematologist suggested taking the tablets for 18 months as opposed to the more intense and much shorter but less well tolerated IV method, mostly because husband wants to continue working and prefers the idea of simply popping a pill, and who wouldn’t. I would hate to see him go through the gruelling experience of IV but does it have better and longer lasting outcomes? What have your experiences been?

Thank you

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Noelnoel profile image
Noelnoel
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54 Replies
Spark_Plug profile image
Spark_Plug

Never sacrifice, solely for convenience over long term effectiveness. I'd ask the doctor what happens in both scenarios, and what he'd personally do. The only other question I can see would be will going one route exclude a different route by which order they are taken.

This really will be best answered by the doctor as they have all your husbands medical facts, age, overall health, co-morbidities, trends, etc. Remember, we are going for remissions in between therapy modalities the longer and fixed time over shorter maintenance style of care. As is normal, this is only opinion, every case has its own set of individual circumstances with varying outcomes.

Hoping the best for you both.🙂💐

Noelnoel profile image
Noelnoel in reply toSpark_Plug

Thank you for responding

Never sacrifice, solely for convenience over long term effectiveness

My sentiments exactly Spark. You’re also right about the variables, there are so many of them

Remember, we are going for remissions in between therapy modalities the longer and fixed time over shorter maintenance style of care

What do you mean by this. I couldn’t quite unravel the latter part of it

Thanks again

Spark_Plug profile image
Spark_Plug in reply toNoelnoel

Longer times between the need for another intervention, and to be treated for X amount of time then stop, so that he can enjoy the remission.

Not well you can take this medicine for the rest of your life or until it stops working.

I messed up with "shorter", sorry shorter remission time. I guess the coffee wasn't quite as strong this morning. 🙂

Noelnoel profile image
Noelnoel in reply toSpark_Plug

It was explained that he’d be taking the oral form for a fixed period of time, 18 months but this is quite new to me so I’m just trying to grasp the basics

What do you mean you “messed up”?

Spark_Plug profile image
Spark_Plug in reply toNoelnoel

I wrote unclearly and caused you confusion.

Noelnoel profile image
Noelnoel in reply toSpark_Plug

Oh, I see. Well that’s not a problem, I’m very grateful for your input

Ukuleleboy1 profile image
Ukuleleboy1

I faced the same choice a few months back. I took the view that eighteen months of my life extremely restricted was not a great idea but then I’m 73. Certainly take the best long term view if you can. Good luck. Perhaps just to add that my first three months have been quite tolerable.

Noelnoel profile image
Noelnoel in reply toUkuleleboy1

Hello Ukulele

Taking the best longterm view is very sound advice. Thank you

Have long have you had CLL and which treatment did you opt for?

Ukuleleboy1 profile image
Ukuleleboy1 in reply toNoelnoel

Now been on ibrutinib for three months and start ventoclax in two weeks. I went for tablets at home on advice of consultant. Doing ok so far. Happy Christmas.

Noelnoel profile image
Noelnoel in reply toUkuleleboy1

Thank you very much. Let us know how you get on with Venetoclax

All the very best to you

Skyshark profile image
Skyshark

18 months doesn't quite fit with any UK Venetoclax protocol. It's not uncommon for UK doctors to present choices of treatments in a confusing way. CLL has some of the most complicated treatments.

For18 months duration, the doctor would have make an individual treatment request with an explanation, costing and refer to (non existent) clinical research why they consider that the current treatment durations should be extended for your husband.

UK NHS currently approved first line treatments for CLL.

1: Tablet only. Venetoclax and Ibrutinib (V+I) is a 15 cycle (60 weeks) short duration treatment. This is about 4 months short of "18 months".

2: Tablet + IV monoclonal antibody. Venetoclax and Obinutuzumab (V+O) is a 12 cycle (48 weeks) short duration treatment. Obinutuzumab is given by IV, 9 days during the first 6 cycles. 4 days in the first cycle, day 1, 2, 8 and 15, then first day of cycles 2 to 6.

3: Tablets "forever". BTKi drugs Acalabrutinib, Zanubrutinib or Ibrutinib, it doesn't seem that this has been offered. It's supposed restricted to those with TP53 aberrations or unsuitable for FCR (chemo).

Whichever of 1 or 2, Venetoclax has clinic visits for blood tests during the first 2 or 5 weeks taking this drug. If low or medium risk of TLS there are blood tests 6-8 hours and 24 hours after the first tablet and before second of the first 2 dose increments, 20mg/day and 50mg/day during week 4 and 5. If high risk TLS this will be in hospital for 3 days / 2 nights with 4 blood tests each, then 3 weeks of 6-8 hour and 24 hour blood tests. The way my hospital scheduled preliminary blood tests on Monday, consultations Tuesday, Wednesday blood test in afternoon and 24 hour blood test Thursday with 3 hour waits for blood test results meant 4 days a week at the clinic.

The initial 3 cycles (12 weeks) of Ibrutinib or first 4 IV in 3 weeks of Obinutuzumab are intended to reduce the TLS risk before starting Venetoclax. I believe they have comparable effectiveness in de-bulking lymph nodes reducing risk of TLS but I have recently been informed that V+I can increase the blood Absolute Lymph Count during this initial phase and that resulted in still being high risk TLS requiring a hospital stay for the Venetoclax. Clinical reports indicate that both V+O and V+I ~20% of patients start as "high risk TLS" and this reduced to 2% before starting Venetoclax. A clinical report for V+I even though only 2% remained as high risk TLS, 18% had to be in hospital for start of Venetoclax, I don't have a comparable figure for V+O.

You should ask the CNS about TLS risk, their experience of TLS risk reduction for each treatment and for an attendance calendar for each treatment.

Toleration.

Both have the same toleration issues for Venetoclax, mainly nausea or diarrhoea. Other common side effects are related to blood disorders that the doctor will have to worry about. V+I "tablets only" the Venetoclax is taken for 3 weeks longer.

Ibrutinib has it's own set of side effects, some of the most common being headaches, joint pain, bleeding and bruising.

Obinutuzumab is generally well tolerated but has a high incidence of infusion related reactions (IRR), usually just on the first IV. These are usually dealt with quickly by antihistamines and steroids, then the IV is restarted at a slower rate. At least one NHS cancer alliance (Thames Network and maybe East Mids that uses Thames protocols) has a slower 5 hour first IV for those deemed to be high risk of an IRR (but Southampton, SWAG and Liverpool don't have this in their protocol). If high risk of TLS the day 1 and 2 IV's will be in hospital, possibly 8 blood tests (I got an extra one and 8 hour IV due to temperature spiking).

Both treatments seem to be similarly effective, with treatment free periods after the treatment. V+O has a greater number that reach minium undetectable disease uMRD4 ~80%, while for V+I it's around 55%. The numbers that have Complete Response (best result possible - not remission) are similar around 50%.

None of these drugs are "chemotherapy", these are "chemotherapy free" treatments. They do not disrupt the DNA of cells undergoing division, which affects skin, gut, hair and nails.

Noelnoel profile image
Noelnoel in reply toSkyshark

That’s a lot of information. Thank you for taking the time to get it all down

We’ll need to read it again and look up the abbreviations to understand fully and then come back with questions

Very grateful

Skyshark profile image
Skyshark in reply toNoelnoel

The important one is TLS - tumour lysis syndrome. Venetoclax and to some degree Obinutuzumab kill a lot of B-cells very quickly. The products of those cells breaking down enters the blood and after a number of metabolic changes has to be disposed of by the kidneys. If the concentration is too high it can crystallise in the kidneys rupturing the very fine tubes in the kidneys, causing kidney failure.

Because of this the drugs are given in very small doses to begin with and the dose is gradually increased. For Venetoclax that is over a period of five weeks, called a "ramp-up".

It is important to drink water 1.5-2L a day during this phase to flush the kidneys.

The assessed risk of TLS determines the treatment and number of blood tests to monitor for TLS. Allopurinol (common gout drug) is given to control uric acid levels. High risk receive Rasburicase to prevent TLS, which is also given if TLS is detected in the blood tests. Allopurinol should be not be taken on days this is given as it stops it working.

IRR - Infusion related reaction.

CNS - clinical nurse specialist. Should have been given a card with contact details.

SWAG - South West and Gloucestershire (cancer alliance).

Noelnoel profile image
Noelnoel in reply toSkyshark

Thank you for all of this, it’s so helpful

NMgal profile image
NMgal in reply toNoelnoel

Hi Noelnoel,I know this can be so confusing and overwhelming! This group is a fantastic place for information.

I was on Venetoclax and Obintuzamab. The venetoclax for 2 years. I did not have any major issues, just the usual ones.

I have been in remission for 4 years this month. Best of luck, get all the info and do what works for You!

Lorna

emmiekay profile image
emmiekay

Definitely the Venetoclax! I have had bad experience with chemo and the Venetoclax was so much better. Took it for a year and have been in remission for five.

RosettaClapp profile image
RosettaClapp in reply toemmiekay

UK modern treatments aren't chemo.. They are targeted and have many fewer side effects

Noelnoel profile image
Noelnoel in reply toRosettaClapp

Thank you for that clarification Rosetta. There so much to learn and understand

Noelnoel profile image
Noelnoel in reply toemmiekay

That’s very good news and must be a welcome relief for you

Would you mind outlining your chemo experience but will understand if you don’t want re live it

emmiekay profile image
emmiekay in reply toNoelnoel

I had R-CHOP for Richters Transformation in 2007 with no problems. When the CLL caused me to need treatment in 2017, I had one infusion of Bendamustine/Rituximab and got a high fever and neutropenia and was in the hospital for two weeks and it was awful. A year later Venetoclax became available and it has worked well for me. I was supposed to take it for two years, but due to low WBC I stopped after a year. I took the Venetoclax as well as 8 infusions of Rituxan.

Noelnoel profile image
Noelnoel in reply toemmiekay

That’s very good news. Encouraging

Thank you

DanBro1 profile image
DanBro1

I can only speak for myself, of course, but when I was diagnosed at MD Anderson (SATX) in Nov 2020, I was offered a choice of treatments: One IV treatment of Obinutuzumab per month for 6 months plus 4 Venclexta pills each day, after 12 months - done! Or, pills every day forever. DUH! The IV is a 4-hour rest period while you watch TV one morning per month, and the pills go down OK. The first month regimen I had light chills and fever for a few days, after that no problems. I've been in remission for over 2-1/2 years with no issues. And see my oncologist every 6 months.

Skyshark profile image
Skyshark in reply toDanBro1

V+I was approved by NICE for NHS routine use in May 2023 (4 weeks after I started V+O). Judging by posts about it on here it seems quite popular.

One NHS patient that reacted very badly to the first 100mg (10% of first dose) IV of Obinutuzumab has switched to V+I (individual funding request IFR) but another was considered to have failed first line and was given 2nd line treatment VenR for relapsed/refractory.

I can see no reason why early intolerance to Ibrutinib shouldn't result in a switch to V+O.

The US FDA rejected the application for V+I. As each drug is approved individually it could, insurance permitting, be used "off label".

European approval was August 2022, it only took NICE in the UK 9 months to get their act together.

jnj.com/media-center/press-...

Noelnoel profile image
Noelnoel in reply toDanBro1

Thank you DanBro

It seems you tolerated the IV option quite well. Were you in good shape prior to it?

I hope you’re enjoying your remission. Congrats on getting there!

LeoPa profile image
LeoPa

I only heard about Venetoclax pills. It can be administered through IV?

Noelnoel profile image
Noelnoel in reply toLeoPa

I’m not the person to ask, I’m new to all this. Hopefully someone else will have an answer first you

Skyshark profile image
Skyshark in reply toLeoPa

No. IV Venetoclax is only available for research, usually animal.

They can't let that out into general use. The uptake of oral Venetoclax into the blood is about 1%. IV dose would be about 1% of oral, that would reduce the cost by 99% of current pricing, $150/cycle. As nothing else could compete on costs and IV CLL drugs could never pay for the clinical trials of new drugs all research would halt! We would be stuck with what we've got - no cure.

It could be administered by a syringe pump avoiding the high cost of IV at a clinic. These are commonly used for diabetes.

Other cost reductions (75%) have been used (n=1!) in China.

frontiersin.org/journals/on...

Until there is a cure we must pay to promote research. When there is a real 100% cure for all cost reductions can be explored.

LeoPa profile image
LeoPa in reply toSkyshark

Thank you for the info. Why do you think the price would drop 99%? Drug makers charge whatever they want, don't they? They could ask the same money for the IV they ask for the pill perhaps?

Skyshark profile image
Skyshark in reply toLeoPa

Then some enterprising person could buy pills, dissolve 400mg in one litre, split into a hundred 10ml doses and sell it at 990% profit while undercutting Abbvie by 90%.

LeoPa profile image
LeoPa in reply toSkyshark

Why doesn't anyone, I wonder?

Skyshark profile image
Skyshark in reply toLeoPa

Cost of getting it approved and proving that it's still effective.

Dragonfly2007 profile image
Dragonfly2007

I had to start treatment as my breathing was impaired by CLL so I've been taking ibrutinib tablets for 6 weeks, Ventoclax tablets will be added after 3 months. It's a fixed 15 months treatment. My blood pressure was high for the first week or two then it settled down. Side effects are slight headache, some diarrhea and fatigue but no more than before and I'm no longer feeling like I've got the start of flu, lymph nodes are melting and I can breathe 🎉 It's just one tablet and I drink 2 litres of water a day. Everyone is different but honestly it's currently great and I'm getting my life back !!

Noelnoel profile image
Noelnoel in reply toDragonfly2007

Thank you for that uplifting message and info. Great to hear of people getting their lives back

Wishing you continued success

Samm22 profile image
Samm22

I am on Zanubrutinib and then Venetoclax was added because my specialist thought it gave me a better chance of reaching a longer remission. Zanubrutinib is in the same class of drugs as Ibrutinib. I am fortunate to have negligible side effects and live my life normally. Wish you the best.

Noelnoel profile image
Noelnoel in reply toSamm22

Thank you Samm2

May you have a very long remission and remain relatively free from side effects

SofiaDeo profile image
SofiaDeo

It's not that the IV obinituzumab is "more grueling", or "less well tolerated", it's that monoclonal antibodies like obinituzumab have a well-known side effect that MAY happen. "Infusion related reactions" are common in everyone, and it's related more to the fact that the drug molecule is large and not the drug itself. People have the potential to have the same reactions when infusing Immune Globulin, which is a normal component of blood. It's just, our body reacts when concentrated infusions of large molecules are done.

So some people react strongly when getting large molecule infusions, while others don't. No way to tell ahead of time. Thus, someone unwilling to potentially miss *any* days of work may not want to risk having an infusion reaction. There's data out that the V&I, oral only, treatment is comparable to V&O. So people who hate needles, or are unwilling to take off work even for an afternoon for infusions, can skip them.

Noelnoel profile image
Noelnoel in reply toSofiaDeo

Thank you Sofia, that’s helpful

Dodger47 profile image
Dodger47

I just completed a cycle of obinituzumab and am restarting venetoclax, taking one pill a day. I had the complication of Autoimmune Hemolytic Anemia (AIHA) which landed me in the hospital (which is where I started the infusions and initially the venetoclax. I started with 1 pill a day and quickly ramped up to 4 pills a day. When my AIHA did not improve (very low hemoglobin) my doctor took me off venetoclax and continued with the infusions. Eventually, my hemoglobin reached a level where I could leave the hospital but is still not where it should be. I tolerated all the different treatments well and wish that also for your husband. This CLL journey is often long and convoluted but there is promise of better outcomes. Personally, I prefer taking the oral venetoclax, even though it will take a year to conclude. I agree with so many who have stated that decisions about the best choice to make (because of so many variables) is really a personal decision, guided by physicians and the best knowledge base we can gather before deciding.

Noelnoel profile image
Noelnoel in reply toDodger47

Hi Dodger and thank you for your good wishes

Good news that you’re now at a stage where things are more settled but I hope your haemoglobin continues to rise

It’s really helping to hear all the different experiences and points of view. Thank you for responding

Wishing you continued success in your endeavours for a good remission

andyfurks profile image
andyfurks

I had O & V and that was over a year. Never had any ill affects and count myself very lucky as such, was back in work 3 months after starting treatment. This was my choice as I didn't want chemo.

Can only say it is each to their own but I am so happy with the treatment I had - 3 years on and still not come back

Noelnoel profile image
Noelnoel in reply toandyfurks

Thank you very much for that positive story. Wishing you continued success with your remission

Hoffy profile image
Hoffy

I did imbruvica plus veneroclax and have done very well. IV CD20 antibodies is harder on the Bcells in my opinion and the immune system in my opinion.

Be well,

Hoffy.

AshGS profile image
AshGS

I have personaly been on Imbruvica ( brand name of the ibrutinib) for almost 3 years now coz I had also my kidneys affected and couldnt get the chemo therapy treatment. It works very well thanks God and the improvement was quite fast.

For sure, every case is different. Prepare a list of questions and talk with your dr.

Best of luck!

Noelnoel profile image
Noelnoel in reply toAshGS

Hello Ash

Sorry your kidney problem prevented you from having the “chemo treatment”. Would that have been your preference? Good to know you are using a satisfactory alternative though

Thanks for your advice and good wishes. The best of luck to you too

AshGS profile image
AshGS in reply toNoelnoel

To answer your Q.: No; I would still go to the Ibrutinib. Almost no side effects. and I believe the chemo option, will still be possible in case - God forbids - the response to the Ibrutinib is not as expected.

Good luck!

Cat_mom82 profile image
Cat_mom82

my husband has been on ibrutinib a little over 2 years. We were so scared when we were getting educated on the drug when they name all the side effects. Luckily it’s been a wonder!!! His worst side effect was cramps. So bad once we had to call EMS. His gp has given him muscle relaxer methocarbomal and it’s helped tremendously. Go with the pill. It’s targeted to only get the leukemia cells. I know this is a scary time in your lives and I send you strength. Being a support person to a loved one is a huge responsibility and I pray God helps me do better every day.

Noelnoel profile image
Noelnoel in reply toCat_mom82

Hi Cat

Thanks for your message of encouragement. It’s really nice to hear so much positivity, it helps to know how well others are doing

Thanks again

Cat_mom82 profile image
Cat_mom82

no thanks needed!!! Happy to be able to help a little. We are all in this together

Noelnoel profile image
Noelnoel in reply toCat_mom82

All the same, I can’t help but feel grateful for all the useful and encouraging info 🙂

Cat_mom82 profile image
Cat_mom82

you’re absolutely welcome

Coldplaybest profile image
Coldplaybest

I would very interested in seeing replies to this. I started the oral version of this treatment 2 months ago. I am on ibrutinib and start ventoclax in a months time.

Noelnoel profile image
Noelnoel in reply toColdplaybest

Very glad it was of use to you

How are you getting on?

Coldplaybest profile image
Coldplaybest in reply toNoelnoel

Very well so far. The swelling of my lymph nodes have reduced significantly and side effects have been minimal. I am getting quite a bit of skin rash but I have noticed a small increase in energy levels. John

Noelnoel profile image
Noelnoel

Thank you, encouraging to hear. I suppose a “bit of skin rash” is a small price to pay

Keep up the good work!

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