Is this normal?

[popys]

We are in the UK. My Husband was diagnosed in 2019. Is prescribed Ibrutinib at the moment. He goes for FBC every 28 days but during recent appointments he has been getting some surprise from the nurses that he has been taking Ibrutinib for so long. Understandably he is getting a bit discouraged at this and is worried that his time on this drug should be at an end. Has anyone had any experience of this at all? Thankyou.

[annmcgowan]

Hi I have been on ibrutinib on the flair trial for 6 years and am about to move to the static trial where I may continue or discontinue ibrutinib until my bloods suggest I need it again. My understanding is that unless you are on a trial ibrutinib can and is used continuously until your bloods suggest it is no longer working for you or you decide side effects are too much for you to continue. Does your husband see a CLL specialist? If he does he needs to discuss this with them. If not it may be wise to look for one. Alternatively he needs to discuss this with his prescriber.

Good luck

Ann

[popys in reply to annmcgowan]

Thanks Ann, so 6 years on Ibrutinib is quite normal?

[annmcgowan in reply to popys]

Yes and longer. The flair trial only provides ibrutinib for 6 years. The static trial is looking to see if have a break prevents resistance to ibrutinib. There will be 2 arms if the trial those remaining on ibrutinib and those taken off it. It is a randomised trial so the computer decides who stays on ibrutinib and those who come off. Who is prescribing for your husband?

Ann

[popys in reply to annmcgowan]

The hospital where he was diagnosed. Very good Doctor I think, hope.

[annmcgowan in reply to popys]

I would speak to the doctor and ask if they are CLL specialists. If not maybe they know one that they can refer you too or even ask for advice and guidance.

Ann

[leopardo in reply to annmcgowan]

Was on it for a long time, at least four years. So I would not become too jittery about it at this point. I would, however, speak to the appropriate oncologist-haematologist – whoever your specialist is.

Leopardo

[GettinThruIt in reply to leopardo]

HI, why did you stop and how is that going?

[PAgrandmom in reply to annmcgowan]

I have been on Ibrutnib for 4 years with no end in sight. Is is my understanding that I will take this drug for the rest of my life. My drug tests have been clean for about 3 years. I have no clue what drug trial you are in but those of us on the drug will need to stay on the drug. For my part the drug eradicated the Non-Hodgskins Lymphoma.

[annmcgowan in reply to PAgrandmom]

Hi I have CLL not Non Hodgskins. I entered the flair trial 6 years ago. The trial provided ibrutinib before it became available on theNHS and lead to it becoming available for those with CLL in the NHS thereafter. My 6 years on flair are up and I had to decide to go on NHS waiting list until my disease progressed again or go on Static where I will go back onto ibrutinib on as soon as my bloods show change. I choose as Static as it is best for me and because trials aid our understanding of CLL. The purpose of flair is to certain the possibility of drug holidays from ibrutinib to prevent resistance in the future. I hope this aids your understanding of my replies.

Good luck

Ann

[annmcgowan in reply to annmcgowan]

I meant the purpose of Static not flair. Sorry.

[Poodle2]

There are patients who have been on Ibrutinib for many many years. I wonder if your doctor and his team are CLL specialists. I don't think they would be surprised if they were. I think I would speak to them. Some medical professionals don't realise that things they say can have a certain effect on patients.

[popys in reply to Poodle2]

I know. Maybe the nurses just don't understand some of these drugs. His consultant is not surprised so this is the main thing really. I just hate to see my hubbie getting perplexed about this.

[AussieNeil Partner Administrator in reply to popys]

Ibrutinib is typically prescribed until it no longer works. There are some early trial participants who have been successfully using ibrutinib for over a decade. As you've learned, in the UK, how ibrutinib was initially prescribed also influences how long it can be prescribed, as research is continuing to determine which patients can safely have an extended break off ibrutinib treatment.

Neil

[popys in reply to AussieNeil]

Thankyou Neil, we will discuss with his consultant at their next meeting, his numbers are all normal thankfully.

[fapumpkin]

Hello, I have been on Ibrutinib since 2016, 6 years on the flair trial and now on the static trial, I have had one 7 day break for back surgery and another 7 day pause for an endoscopy. Not sure why a nurse would be surprised and the advice to talk to your consultant is wise advice.

[popys in reply to fapumpkin]

Thankyou fapumpkin, we will confirm with his consultant at next meet.

[Skyshark]

I would have expected blood tests and prescription at longer intervals. Less work for the doctors. Or his he now in a nurse led clinic? Still being on monthly bloods and appt's is something you should query and understand.

nssg.oxford-haematology.org...

INVESTIGATIONS

▪ FBC, creatinine monthly initially, extending to 3 monthly for stable patients.

Patients who are stable and without any side-effects could be monitored in a nurse-led or pharmacist-led clinic with blood pressure and pulse readings

If he isn't attending at one of the hospitals on this web page for CAR-T there is a high chance the doctors are not CLL specialists.

england.nhs.uk/cancer/cdf/c...

[popys in reply to Skyshark]

Thanks for the information, he is still under the care of a consultant. He is stable so I would have thought intervals between tests could be longer. We will discuss with consultant next time we meet.

[leftysfsl1945]

I highly recommend that ALL CLL patients read THE METABOLIC APPROACH TO CANCER by Dr. Nasha Winters.

Also consult with Naturopathic (ND) doctors along with Oncologists and Hematologists.

I was diagnosed with CLL during December 2021.

My ND put me on an EGCG based regimen during February 2022 and according to the National Comprehensive Cancer Network (NCCN) guidelines I am in Partial Remission (PR).

Stanford University and St Judes Hospital in Memphis, TN are both members of the NCCN which includes over 30. U.S. medical facilities.

Despite the fact that my EGCG based regimen eliminated night sweats and weight loss (197 pounds to 167 pounds) in less than a month AND my WBC dropped from 26,400 to less than 13,000 (with ZERO side effects) my Hematologist suggested that I SUBSTITUTE ibrutinib ($2500 per month) for my EGCG regimen ($375-450 per month).

I REJECTED ibrutinib.

Recently, my ND gave a choice of LDN and Mistletoe to add to my SUCCESSFUL EGCG regimen to get to Complete Remission (CR).

I chose LDN because no pharmeceutical company has a patent on it and the cost is only $62.00 per month.

Very high probability I will be in CR before the end of the year.

Lastly, EGCG (from NFH) must be taken with a special formulation of Vitamin E to avoid liver problems.

Advocate for YOURSELF and DO NOT act like a CANCER VICTIM.

Peace

[Deilginis in reply to leftysfsl1945]

Hi Lefty, what does the Low Dose Naltroxene do?

[AussieNeil Partner Administrator in reply to leftysfsl1945]

Hi Leftysfsl1945,

I'm sure that there are many members very interested in your CLL journey, so why not share more of it in your profile, (including your prognostic markers if known) and provide regular updates in your own post? Here you have tantalising shared that "Despite the fact that my EGCG based regimen eliminated night sweats and weight loss (197 pounds to 167 pounds) in less than a month AND my WBC dropped from 26,400 to less than 13,000 (with ZERO side effects) my Hematologist suggested that I SUBSTITUTE ibrutinib".

- that "according to the National Comprehensive Cancer Network (NCCN) guidelines I am in Partial Remission (PR)."

- and a "Very high probability I will be in CR before the end of the year."

Sadly, we know from CLL Society reported studies; confirmed by many shared examples to our community, that some oncologists and hematologists do recommend treatment before it is required per the NCCN or iwCLL guidelines, unless they specialise in treating those with CLL. Given your familiarity with the NCCN guidelines, what were your specific triggers per the NCCN or iwCLL guidelines that it was time for you to start treatment and why do you consider you have a very high probability of a CR this year? (For those interested, this pinned post contains links to the NCCN and iwCLL CLL guidelines healthunlocked.com/cllsuppo... )

You have shared a change in your WBC, but given that's not an accurate measure of your CLL blood tumour level (a quarter to a half of your WBC could be due to neutrophil and other WBC counts and hence responsible for much of your improvement), nor is it particularly high (we have members with WBCs of several hundred thousand in watch and wait), given your confidence of achieving CR this year, I presume you are tracking other tumour load indications, (spleen and node size, haemoglobin, platelet counts etc. and are seeing encouraging improvements.

Personally, early in my CLL journey, when I was taking EGCG and turmeric, I saw occasional significant drops in my ALC, including one from 20,000 to 8,000 (see attached). My ALC even stabilised in the last 3 years of my watch and wait period, but the overall trend was upwards. Like yours, my ALC also wasn't all that high, as my CLL started as SLL. My problem was that my platelets and haemoglobin just kept trending down, due to bone marrow infiltration, plus my spleen and nodes slowly kept enlarging. With CLL, given your understanding of how a CR is assessed, you know that we need to monitor changes in the total CLL burden. We also need to keep in mind that it is possible to change the signalling directing the distribution of CLL cells between the blood, nodes and bone marrow, such as with cannabis (incidentally something along with IV vitamin C that Dr Winters is studying and which have not shown effectiveness with CLL. Her other interest, mistletoe, which you are using, does have this intriguing meta-analysis paper showing a possible effect on cancer (not specifically CLL).

Survival of cancer patients treated with mistletoe extract (Iscador): a systematic literature review (with my emphasis)

pubmed.ncbi.nlm.nih.gov/200...

Conclusions: Pooled analysis of clinical studies suggests that adjuvant treatment of cancer patients with the mistletoe extract Iscador is associated with a better survival. Despite obvious limitations, and strong hints for a publication bias which limits the evidence found in this meta-analysis, one can not ignore the fact that studies with positive effects of VA-E on survival of cancer patients are accumulating.

From the results:-

The majority of studies reported positive effects in favour of the Iscador application. Heterogeneity of study results was moderate (I2 = 38.3%, p < 0.0001). The funnel plots were considerably skewed, indicating a publication bias, a notion which is corroborated by statistical means (AC = -1.3, CI: -1.9 to -0.6, p <= 0.0001). A random effect meta-analysis estimated the overall hazard ratio at HR = 0.59 (CI: 0.53 to 0.66, p < 0.0001). Randomized studies showed less effects than non-randomized studies (ratio of HRs: 1.24, CI: 0.79 to 1.92, p = 0.35), and matched-pair studies gave significantly better results than others (ratio of HRs: 0.33; CI: 0.17 to 0.65, p = 0.0012).

Also see: mskcc.org/cancer-care/integ...

Note that these studies are with respect to Viscum album (VA-E), the European white-berry mistletoe. I was recently surprised to learn that Australia has nearly 100 different species of mistletoe!

With respect to vitamin E, I'd be interested in any studies behind this recommendation; I can find positive studies regarding the effect on transaminitis with non-alcoholic fatty liver disease and rheumatic arthritis, but not cancer.

I hope you do achieve a CR, but given we strive to be an evidence based community, providing more evidence of your progress would be welcome.

Neil

My ALC was also low, but could jump around significantly

[popys in reply to leftysfsl1945]

Thankyou, this is very interesting. I would like to learn more and I agree, advocating for yourself is the way to go.

[Aerobobcat]

Hi popys,

Just to add to the responses you have already received. I had been on Ibrutinib for 10 years and have now been off this drug since last November, I posted my experiences in my post “Ibrutinib stopped” which might answer some of your concerns.

However, my understanding has always been, Ibrutinib as a treatment continues for as long as it is working and it certainly worked for me, although I struggled with side effects which were perhaps wrongly attributed to the Ibrutinib.

My treatment was stopped due to the risk of cardiac toxicity and although I still suffer from side effects which are more likely associated with my other autoimmune conditions.

Aerobobcat

[popys in reply to Aerobobcat]

Hi, 10 years is brilliant! He does have some side effects but nothing too bad so I hope he can continue with the Ibrutinib for some time yet.

[Aerobobcat in reply to popys]

Hi popys,

Yes, 10 years is a long time! So good luck to you both, and hope the Ibrutinib works wonders for you.

[MovingForward4423]

Ibrutinib is designed to be taken until disease progression. Speak to your consultant about having disease bulk checked and the potential to come off treatment for a period of time. Remember once you stop treatment CLL will come back at some point.

[popys in reply to MovingForward4423]

Thankyou. He will be discussing this with his consultant in more detail in July.

[Villager]

Greetings

I started Ibrutinib in 2014. Successful in treating my CLL until last July, 2023 (9 years). Transitioned to Venoclax (Venclaxta) in January, 2024 and I am currently in remission. 77 year old male, now feeling in excellent health. Best regards to you and your husband!

Villager, USA

[popys in reply to Villager]

Thankyou Villager and 9 years is great! So glad you are feeling well. Long may it continue.

[bandit44]

Hi- Yes, I have been on Ibrutinib for 2 yrs. when I first got sick. You can't stay on it too long, as it has nasty side effects. There are other good meds out there to go to. I went thru them. wishing you the best. take care, 68 yr. old guy. USA

[popys in reply to bandit44]

Thankyou bandit44. We will stay positive. Wishing you all the best also.

[Rookie]

I have been on Ibrutinib for 7 years and in 'clinical remission' for about 4 years. I received remission on one 140mg a day and just recently changed to one pill every other day and still my numbers have stayed normal. I have very few side effects, just elevated blood pressure. I will continue on this regemin for the foreseeable future. I am a 66 yr old female in the US. I carry on as normal. Ibrutinib has been good to me!!!