After you stop with ibrutinib - does Sll-CLL come back?

Hello, i am Anja,54, diagnosed with Sll after many years of health problems. I need treatment but do not want chemo. Now they want to give me ibrutinib. My question is: hoe long do you take ibrutinib? Can you stop with it or does the disease comeback back than very fast?

Did anyone of you a kind of alternative treatment like hypothermie or CBD oil or diats?

25 Replies

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  • Hi Anja-jantina

    Welcome to our community, there are no alternative treatments to treat our disease that are scientifically proven to do so. Though surfing the web will turn up many who will promise cures.

    Ibrutinib is one of the very latest treatments and some here will surely come along to share their experiences. Personally if I needed treatment I would grab it with both hands.

    However your specialist is the one with whom you need to have an in depth conversation, we will help all we can but in your situation it's your medical team who can provide the answer you seek.

    Best wishes, do let us know how you get on.

    Bubnjay1

  • Thanks for tour reply. Though i have the impression that you are careful to answer 'politically correct'. That is what i regret. Also specialists are very much afraid to say something else than the standards of today. It is of freedom of opinion and speech do not exist when it concerns cancer treatment. To talk with someone openly about advantages and disadvantages is hardly impossible. Also do have medical specialist very little knowledge of natural treatment. And also do they advice what they have to offer.

    What i am worried about concerning ibrutinib is that i never heard that anybody could stop taking it and was healthy afterwards.

  • Had to smile at the thought of being politically correct, I say things as I see them, and not to fit anyone's agenda.

    I hope you find what you seek, but always ask for proof.

    Best wishes always

    Bubnjay1

  • Well Bubnjay1 i am glad i brought a smile in your face. Did i do something good today. Also the best for you.

  • Hi, I am on Ibrutinb - Imbruvica is what I call it (because I can spell it easier!). I've been on this for almost a year, and my blood work is back to normal, except for the immunological blood tests, which are still low and means I'm open to more infections than usual. I asked that same question about when can I get off this drug, and my oncologist told me never - that I should think of it like a drug that treats high blood pressure or diabetes, you just have to keep taking it. That was disappointing to me and I don't know what would happen if you stop taking it, but guessing the cancer would come back stronger again, although, I don't know for sure. I was hoping that after a while I'd go into remission and could stop it, but, doesn't look that way. Sorry.

  • Hi and welcome Anja-Jantina,

    SLL/CLL is considered incurable, i.e. it always comes back. The only possible exceptions to this are a successful bone marrow transplant (high risk at the typical age of most of us and with usage decreasing as better treatments become available) and FCR chemoimmunotherapy if you have the right CLL genetics.

    Many of our members are successfully using Ibrutinib though some are reporting difficulties using it per these posts: healthunlocked.com/search/i... I'd say that Ibrutinib is currently the most sought treatment for CLL where it is available - and with good reason!

    Unlike the older chemo based treatments, which aim to put us into remission, the newer, non-chemo drugs like Ibrutinib are considered maintenance drugs, which aim to keep CLL under control. Because the vast majority of patients on Ibrutinib have been previously treated, they tend to have more difficult to treat (clonally evolved) CLL, so indeed early reports of patients that stop taking Ibrutinib have shown that can CLL come back quickly. Those that have been on it for longer and have seen a greater reduction in their CLL tumour burden generally see a slower return of their CLL. We still don't have much experience with Ibrutinib, so there's a lot more to learn. If a patient has to stop Ibrutinib, it's recommended to start on another non-chemo drug, typically Idelalisib, or perhaps enrol in a clinical trial.

    I assume you are not a native English speaker so by 'hypothermie' I presume you mean hyperthermia (deliberately raising the body temperature) and by 'diats' I presume you mean diets?

    According to this overview, hyperthermia is used to treat solid cancers, not blood cancers like CLL. It's used in combination with radiation therapy and/or chemotherapy and many of these studies have shown a significant reduction in tumour size:

    cancer.gov/about-cancer/tre...

    I believe that we can all improve our diet and by doing so, we can improve our quality of life. But I doubt it can slow CLL progression, let alone cure it.

    There's no evidence that CBD oil can slow CLL progression, but it may have a role in reducing pain and nausea for CLL patients.

    With the exception of hypothermia, the above topics have been previously discussed, with relevant references supplied in replies, so excuse me from trying to find them and repeating them here. (Search on this site unfortunately doesn't work as well as it should.)

    Neil

  • Thanks for your reply. You are right. My native language is Dutch, i live in Germany and my iphone changes my words. So sometimes there are comic words in between.

    There is a lot of evidence that cannabis has potential in reducing cancer. Not in terms of standardized investigation, but in story's from people and their medical records.

    As i am only 54 and have still children at home, i do think further than the moment. Most medicines i do not tolerate at all or for a period of time i can use them and then i get severe side effects. So it is for me not a theoretical but very practical question: what happens after you (have to) stop this medicin.

    Thanks for the link to the page of hypothermia. I know a hospital that uses hypothermia also for CLL but i heard also that it can work differently for leukemia's.

    I thought of hypothermia in combination with a very mild chemo. As i heard this combination is effective with little side effects. But i do not like to bring myself in danger.

    Thanks for explaining

  • Anja - I would guess that most of us start this journey looking for alternative treatments. We still have disease progression. Eventually we come to medically acceptable treatments. I did ask my oncologist about CBD oil and he said "no credible proof". I have been on Ibrutinib for 8 months and would be happy to answer any questions you may have-

    Virginia

  • Hallo Virginia, my experience is that people start seriously with natural treatment after regular medicines has nothing more to offer.

    Your oncologist is only trained in regular medicines. And regular medicine factories do not want to loose their market. So they tend to weaken every proof there is for a natural medicine.

    Also (in the Netherlands and in Germany) many doctors are afraid to say anything else than the standard.

    I decided not to go for ibrutinib because it can have serious side effects and because people need to take it for a long time.

    I do hope it works for you and that you have little side effects.

    I go for natural treatment for at least three months. Thanks for your reaction though and the possibility to ask you questions. Very Nice.

  • I took ibrutinib in a clinical program at OSA with Dr. Byrd. I developed a serious bleeding problem but went from stage 4 to complete remission and I now feel fine. I've been in remission for over two years. I am now 79. Am I cured? I figure I'll know in 20 years.

    Not everyone will have the same results, so you need to discuss it with your doctor.

  • Pepper, you said that you "took" ibrutinib and have been in remission for two years. Are you still taking ibrutinib to maintain your remission?

  • Because of the bleeding problem, Dr. Byrd was going to switch me from ibrutinib to another clinical medicine. When they screened me, they found I was cancer free and I could stop taking the medicine. I still do IVIG every month, also, Bactrian and Valtrex.

    Am I "cured"? Too early to tell but I feel like I'm cured. It's a great drug and I'm very fortunate; hopefully, you will have the same success.

  • WoW, that is what we all want.

  • I took Ibrutinib for two years then had to stop taking it as it gave me interstitial lung disease.

    The CLL will no doubt return at some point, but at present I am well in all respects eight months after stopping Ibrutinib.

  • I wish you a long time without any disease

  • Just last week I had a conversation with Dr. Furman on this exact subject. He surprised me with new information that some Ibrutinib patients are reaching MRD neg (Minimal Residual Disease) after taking Ibru for more than 5 years. A few pioneers are stopping treatment after MRD neg and some have had PFS (Progression Free Survival) beyond one year, but the data is very young and sparse.

    There is more data for patients taking Venetoclax, showing they reach MRD neg around one year and several are still PFS beyond two years after stopping treatment.

    No one is saying that MRD neg absolutely means "cured" but my biggest surprise was when Dr. Furman actually used that word in the conversation, as a possibility. As the researchers always say: "more data is needed!"

    Len

  • thanks for sharing

  • That's encouraging news, thanks.

  • Len, did Dr Furman say what type of CLL did the patients that achieved MRD -ve with ibrutinib had, eg mutated , unmutated ?

    Thanks, Ileana

  • Since I am UnMutated I did ask that specifically and he asserted it did not matter, Mutated or UnMutated got similar results.

    I asked about previously treated vs. treatment naive and he agreed that in Ibrutinib there was an advantage in OS (Overall Survival) for previously untreated over relapsed - refractory patients that had multiple rounds of Chemo. But there is not yet enough data from untreated on Venetoclax to determine if there is an OS advantage.

    And each time we discuss this we agree that although I am now on my 4th treatment, I have never had Chemo. Dr. Furman feels that multiple Chemo treatments lead to higher risk of marrow damage diseases like MDS (Myelodysplastic Syndromes) that shorten the OS.

    Len

  • Hallo Len, can you tell me more about the treatment you had thusfar?

    What medicines? How long did you take them? Did you have years without medication?

    Thanks, Anja

  • Hi Anja-Jantina,

    Here is my signature block from the cllforum.com that lists my treatments and I've added my (w&w) DX= diagnosis TX= treatment:

    DX 2008 Trisomy 12 Unmu CD38+ Zap70neg

    ( then 2 years w&w)

    TX Rituxan 2010

    (2 years w&w)

    TX Idelalisib+R Dec 2012 to May 2015 ALC 8.9

    TX Imbruvica May 2015 to Feb 2016 skin rash

    (4 months w& w)

    TX Venetoclax June 2016 - MRD neg Nov 2016

    As you can see my UnMutated disease progresses very quickly and I respond to treatments very quickly.

    Len

  • Hallo Len, Thanks dor your reply. But what does w&w mean? And how did you feel all those years?

    Is the progression rate now the same as it was 8 years ago or is it better or worse?

    Thanks, Anja

  • w&w= Watch & Wait (some say Watch + Worry) = the time you are NOT being treated but observed/examined/tested by a medical team after diagnosis.

    My progression rate is much faster now- only 4 months after stopping Ibrutinib, my ALC rose from 30k to 110k, my nodes and fatigue grew, so I opted to start Venetoclax.

    Len

  • At the moment You take Ibrutinib forever or your disease starts progressing. They are doing studies on stopping or decreasing the dose. On Ibrutinib my wbc went from 238,000 to normal in one month. Before I started treatment I used CBD oil, tumeric, and other herbal items. Did they help? Did they extend my w&w. At 3 1/2 years my hemoglobin declined and I started treatment. I am high risk due to my genetic markers and was put on Ibrutinib. To me it is a miracle drug.

    If you spend time on this website you will see many questions from newcomers about alternative treatments. Everyone wants to do what they can to delay the progression of CLL. But then most progress. No one has found that magic bullet yet.

    Virginia

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