Current best CLL treatment?: I noticed my... - CLL Support

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Current best CLL treatment?

barger1951 profile image

I noticed my platelets have steadily been going down. I had been on Ibrutinib for almost 2 years than off all medication for 2 years. If I have to go back on medication, is there anything effective out there without so many side effects?

Cheers!

Barger1951

39 Replies

I'm doing well on venetoclax so far. Was moved to it in February because of the afib issue on ibrtuinib. Had been on ibrutinib 2.5 years. Venetoclax is a time-limited drug, not a forever drug like ibrutinib. So that seemed like an improvement too. Was having some monstrous digestive/GI problems recently, which I thought might be due to venetoclax. But have been able to bring that under control pretty well.

What does your specialist recommend for next treatment? Good luck to you!

kim

BluMts profile image
BluMts in reply to PlanetaryKim

Kim, how have you "controlled" the digestive problems with Venetoclax, if you don't mind saying. I'm really exhausted with my IB side effects and have been waiting for it to be licensed in the UK.

...

Edit. Sorry meant was waiting for Aclabrutinib to be approved here. My consultant who really treats his patients as individuals has advised he'd recommend I move to Acalabrutinib not Venetoclax at this time. VENETOCLAX is licensed in the UK. Still I like to understand patients reactions to all the meds, particularly digestive reactions.

PlanetaryKim profile image
PlanetaryKim in reply to BluMts

I was in pretty bad shape from post-meal bloating and GI disturbance, to point where I was afraid to eat and had lost a few pounds. Posted earlier this week on that problem: healthunlocked.com/cllsuppo......

Basically in last 5 days I have:

* followed the advice (or modified advice) people gave me (someone reminded me of avocado toast, which is perfect!)

* started taking Beano ( a specific digestive enzyme) with each dinner, but not other meals for now...

* gave myself a crash course on this whole FODMAPs thing and am trying to eat more low-FODMP foods and less high-FODMAP foods

* stay well hydrated

* keep my hand out of the potato chips bag (just because they're non-GMO doesn't mean they're actually good for me - lol!)

* shifted my venetoclax from dinnertime (7-8 pm) to more like 1-2 hours after dinner. At first it didn't seem like that would work, because I woke up nauseated at 3:00 am the first time I tried that. But it has worked every night ever since without problem.

And in less than a week, I have gotten myself back to a more normal life and eating experience. Bowels working better too. :)

BluMts profile image
BluMts in reply to PlanetaryKim

Thank you for these details. Best wishes.

PlanetaryKim profile image
PlanetaryKim in reply to BluMts

And to you too! It is really miserable to have IB/GI issues. Eating should be a joy not a trauma.

Kim, I'm so glad to hear that your digestive issues improved - sounded horrible. I start venetoclax in 2 - 3 weeks. Stay well!

Great that you have a chance to start venetoclax! I hope it goes smoothly. Yes, I was super thankful to find a way to control all this. Horrible problem. It may not hold. But at least if it flairs up again I will have a strategy.

HikerBiker profile image
HikerBiker in reply to BluMts

Hi

Did your doctor explain why he advised you to move to Acalabruntinib and not Venetoclax? Just curious as my specialist had given me the choice between the two, stating a slight preference for venetoclax. Did it have anything to do with Covid - since venentoclax requires more hospital visits?

Thanks

Rick

BluMts profile image
BluMts in reply to HikerBiker

Hi and sorry did not see your request for clarification before. Am going to clarify further with consultant but believe it was because we know that IB does superbly control my CLL but results in a couple of specific side effects that Acalabrutinib hopefully would not give. So is a good thing to try AcalaB, looking at things conservatively. I react so negatively to most meds that I really at this time am afraid to rock my meds boat and take chances when not necessary. As you mention at this time of Covid, I would not want to start on V. But that's a seperate issue and when he suggested Acalabrutinib, Covid was not an issue though maybe he knew more and was alert. Consultant has put other patients on V., but simply did not go there with me. I don't trust easily but trust him.

barger1951 profile image
barger1951 in reply to BluMts

Thanks for your insight.

Best Regards

Barger1951

AussieNeil profile image
AussieNeilAdministrator in reply to PlanetaryKim

Ventoclax/Venclexta was first approved as a maintenance monotherapy by the FDA, where it ("should be taken orally once daily until disease progression or unacceptable toxicity is observed"), but was also later approved for use as a time limited therapy (a total of 6 cycles) in combined therapy with Obinutuzumab or Rituximab, then Venetoclax monotherapy: accessdata.fda.gov/drugsatf...

As trial experience with combination therapies including Venetoclax, I would expect more time limited therapies using Venetoclax to be approved.

Your treatment experience is similar to the successful trials of Ibrutinib (also Acalabrutinib) with Venetoclax, which is why you should hopefully get a long remission out of a time limited Venetoclax course after your earlier Ibrutinib treatment.

Neil

Hi Neil,

The actual length of the venetoclax/obinutuzamab therapy is 12 cycles, according to the link you provided. It is still shorter than the recommended therapy of venetoclax/rituximab that I will be starting shortly, which is 24 months. Is that because the obinutuzamab is "stronger" than rituximab?

AussieNeil profile image
AussieNeilAdministrator in reply to HikerBiker

Obinutuzumab is a second generation CD20 monoclonal antibody and trial experience shows it to be more effective than rituximab. We are still learning how many cycles of Obinutuzumab to optimally use on combination with the newer inhibitor drugs. It or Rituximab is used in combination with Venetoclax for a total of 6 cycles before continuing on with Venetoclax monotherapy for the remainder of the time limited treatment. I've edited my above reply accordingly.

Thank you

Have an appointment on the 25th. Im sure he will say no treatment yet, until I get to a certain number or my glands start to swell up.

Thanks for you imput. How did you get your digestive system under control?

Thanks again,

Barger1951

Hi barger. I detailed above in my reply to BluMts how I haev (fingers crossed!) gotten some servere digestive issues under control this last week, thanks in part to advice I got from members here on this forum!

Basically in last 5 days I have:

* followed the advice (or modified advice) people gave me (someone reminded me of avocado toast, which is perfect!)

* started taking Beano ( a specific digestive enzyme) with each dinner, but not other meals for now...

* gave myself a crash course on this whole FODMAPs thing and am trying to eat more low-FODMP foods and less high-FODMAP foods

* stay well hydrated

* keep my hand out of the potato chips bag (just because they're non-GMO doesn't mean they're actually good for me - lol!)

* shifted my venetoclax from dinnertime (7-8 pm) to more like 1-2 hours after dinner. At first it didn't seem like that would work, because I woke up nauseated at 3:00 am the first time I tried that. But it has worked every night ever since without problem.

One week ago I was in misery from digestive bloat and GI issues after even a bite of food. Now it is pretty good. I was impressed with how fast things could be turned around when I really put my mind to it, did some research, got some information. Not perfect, but not chamber of horrors anymore. lol!

What is avocado toast? And what is FODMAP?

Avocado toast for me is french bread toast and then avocado smeared on top like butter. Some people might dress this with raw onion, salt, pepper, or put it on a heartier bread. But my GI system will not go for that. It is an excellent way to get some carbs and fat and vitamins without upsetting GI system for me right now. Good snack to have with pills that need fat for best absorption.

As for FODMAPs, this has become a big thing in recent years, and a lot of people are pursuing low FODMAP diet to improve all kinds of GI issues - IBS in particular. FODMAP stands for "fermentable oligo-, di-, mono-saccharides and polyols". These are short-chain carbs that are resistant to digestion.

healthline.com/nutrition/fo...

Here is a set of lists of foods either high or low in FODMAPs. the idea is to eat low and avoid high to help with gut issues.

ibsdiets.org/fodmap-diet/fo...

When I was at School in Midwest US told my Mother that we had Avocado smashed on bread with salt. She was totally horrified as in UK avocados were $$$$! And you’d never waste one on a child🤣. And I still love them. Empty skins make a good mask skin not Covid19 😊

Interestingly a couple of friends that have had gallstones removed can no longer eat avocado.

MsLockYourPosts profile image
MsLockYourPostsVolunteer in reply to YelvertonDevon

My family has been growing Avocados for four generations. I remember my mother, when we lived away from "the ranch" absolutely craving an avocado and buying one, even though it was horribly expensive - twenty five cents! She grew up just getting them from the yard whenever she wanted one.

Here in Nanaimo, I am paying between $2.69 and $3 for an avocado. But they are large. I could get 3-4 toasts off each one.

MsLockYourPosts profile image
MsLockYourPostsVolunteer in reply to PlanetaryKim

I was probably 8 or 9, with the value of money not having much meaning for me back then, but my mother exclaiming about 25 cents being outrageous is still etched in my mind.

Mine were picked at just the right time this year @1.70 a pound. COVID has caused the bottom to drop out of the market, as much of the California crop goes to the restaurant industry. Farming is on the essential list here, but many of those who harvest come up from Mexico on Agriculture permits. Getting here or going back home is a mess for them. Plus we have an outbreak of Coronavirus in the packinghouse here. My little town has gone from 2 cases to the most cases per capita in Ventura County (just north of Los Angeles).

Wow! Do stay safe! I have not worried to much here in Nanaimo as I go grocery shopping (with mask on and hand sanitizer) because we dont' have many cases on Vancouver Island.

You know that you can slice and freeze avocados- buy when cheap.

I didn’t know that. Do they defrost well?

Peggy

Yes. Try one to see if you like it.

MsLockYourPosts profile image
MsLockYourPostsVolunteer in reply to YelvertonDevon

You can also freeze them whole when they are ripe. Run under warm water when you take them out to use them let them thaw. And you can do mashed avocados in ice cube trays. High in potassium if you have leg cramps helped by more potassium, but they will NOT cure CLL! I wish! I’d be cured and curing friends!

Great thought and wish about a simple cure. Last week on FB I shared a thought about "If I could turn back back time." Boy would I take advantage of that.

Two Doctors have provided me with the Food Map diet. I will keep it for when I start treatment if my GI gets unbearable. Geesh always something

I will try to freeze avocados. We get them often for .60 here from Aldi's Food Store. I love to make guacamole. The big ones grow in Florida but I like the small ones from Mexico or California.

You can freeze them without cutting. I eat them daily. I freeze them most of the time because we can get at two for a dollar.

That is good info!

Very glad you now have some relief. Thanks for your input.

Cheers,

Barger1951

MsLockYourPosts profile image
MsLockYourPostsVolunteer in reply to barger1951

There is no specific number that means treatment. Your doctor should be monitoring your hemoglobin, platelets and absolute neutrophils as well as looking for a doubling of your absolute lymphocyte count in under six months, along with what is going on with your lymph nodes and any symptoms you are experiencing. I hope you get a boring (my favorite word in medicine) report on the 25th and that you find something to ease your other problem!

Thanks that was helpful ...to ease my mind.

Bless You

barger1951

My oncologist said Acalabtrutinb would be next after Ibrutinib.

barger1951 profile image
barger1951 in reply to maresba14

Thank you for the info!

Cheers,

barger1951

Combos seem to have good results. Many of them are in clinical trials but V plus O is approved for CLL,

Venetoclax is a very good drug from my experience as well,

Obinutuzamab ( Gazyva) is a monoclonal antibody and is showing good results in this combo.

Be well,

Hoffy

Thank you for your input.

Regards,

Barger1951

Hi barger1951,

You sound similar to me: Ibrutinib for two years, remission for 18 months without any (CLL) medication. During remission my Hg fell from 16 to 10, and with it the platelets declined steadily to just below normal.

Before knowing if and what treatment is necessary the question to ask is "Why?".

I assumed the CLL was returning, but the white blood cells stayed in norm. The reason for the falling haemoglobin and and thrombocytes was due to HA (haemolytic anaemia) in which the existing antibodies attack the red blood cells. Previously the treatment used to be steroids for several months. In Germany I took higher doses of cortisone for three days followed by 4 weekly rituximab infusions and a daily tablet of Imbruvica.

During this time my Hg rose to 11, the thrombocytes are still just below norm. The LDH figure before treatment was 940, and this indicated the presence of dead blood cells, which were excreted through my orange urine and a swelling spleen. The LDH has dropped to around 400 which shows the antibody reaction is lessening but continuing.

One specialist said the HA was often a marker for the CLL returning which is probably why I am on Ibrutinib again. However, the recticulocytes, (?) the precursors to red cells are being produced in healthy numbers in the bone marrow, but they are not surviving and maturing. The red blood cells need vitamin B12 and Folsaure. I was lacking in the latter, but these levels should be checked

This may or may not be relevant to you, but I suggest that you ask your specialist what s/he thinks is causing the decline in your platelets. The cause would probably indicate a course of treatment.

My breathless and tiredness are probably caused by HA, but I find being back on Ibrutinib wearing. I am less mentally aware, less well co-ordinated and lack concentration and interest in life. I have an evaluation this week and one of the questions I will ask is, "Is there an alternative to Ibrutinib?"

I wish you good health and I hope you find satisfactory answers to your questions.

Best wishes,

Peter (1947!)

Thanks Peter1947,

I will bring this up and good luck to you on your next evaluation. I still exercise and meditate, that is the only thing that keeps me sane, but the vacation from Ibrutinib was making me feel almost normal. I am not going back on the drug if I can help it.

Cheers!!!

barger1951

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