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?
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.
There is no current cure for our disease. No matter what the treatment, if we live long enough it will come back. They are getting close, but not there yet. I agree with Bubnjay completely about the misleading information out there on the web. There are many many who claim to have a cure for this cancer and a cure for that one, but if in fact it were true, then it would at a minimum be seen in a clinical trial or in actual use. do not be fooled by pseudoscience and fancy talk. They are just trying to take money away from people who are desperate for hope. There is nothing out there at this time that will cure CLL/SLL.
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
Hi Neil, unfortunately you are in my case not quite right in that diet cannot slow down the disease. Because i was a bit too busy i was careless in my diet and that was noticable in growing lymphenodes.
Also, last time i combined the hyperthermia treatment with vit C and liposomales quercetin and my bloodcounts dropped after that almost to normal ranges. So yes, i can agree with you that it has not cured me yet, but not that it is not able to have an influence on the disease.
If you are careless in your diet (plus exercise and general lifestyle), then you obviously aren't going to be keeping your body in the best form to help it stay healthy. The challenge with chronic illnesses like CLL is determining whether changes in blood counts are due to interventions or just coincidental. That's further complicated with CLL in that the proportion of the tumour burden in your blood - the lymphocyte count, may typically be around 10 to 20% of your total tumour burden. It's just much easier, safer and less expensive to measure than doing CT scans and bone marrow biopsies. Does an improvement in blood counts necessarily reflect an overall improvement? I'd say that trends would be a better indication than one off improvements, but frustratingly even that can be muddied by the incidence of spontaneous remissions in CLL. We need more data as Dr Nicole Lamanna recently stated.
I recently wrote a two part post on this topic starting here:
healthunlocked.com/cllsuppo...
Neil
It is true that blood counts do not say much alone. Maybe with CLL more than with SLL (which i have). But my lymfeknotes are also shrunk, measured by ultrasound. Not so much as i want them to, but still undeniable. When it happens one time, you can say it is a coincidence, but when this happens more times, you cannot keep saying this according to the laws of probability calculation. Maybe the farmaceutical industry still wants to call this spontaneous remissions, but actually to keep saying this is not scientifically in itself anymore.
I agree with you that the case of Chris Wark is not so much saying about the chances for a person wit unmutated Cll or SLL. But the case of Glenn Sabin is. Though he is mutated, his disease was far from easy going. And he is not the only one.
Also, according to the doctors 1,5 year ago i should be dead right now when i did not start treatment right away, because of my advanced state and of the agressiveness of my illness and i am still alive. Off course coincidence or spontaneous remission or whatever you want to call this.
Of course it is also a coincedence that 5 people in my street died of the consequences of chemo. The voices of the people who died are not heard anymore.
I am not against doctors and not against medication, but i am against making a god out of the medicine world.
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.
Hi,
I took Imbruvica for my stage 4 CLL; within one month all my lumbs in my neck were gone, after 1 year and according the CT scan my lymph nodes were clean,
16 months thereafter my blood values are back to normal.
I was treated earlier with Rituxan ( 9 years ago ) without succes.
No serious side effects.
I followed a Vegan diet, low carb and I think that was helpfull.
It's worth a try I think, you always can stop, you won't drop dead......
Everything has a risk, driving a car too....
Wish you well,
Content in breach of community guidelines deleted - Admin
Good to hear that you are doing well after coming off Ibrutinib after being treated "earlier with Rituxan ( 9 years ago ) without success", though I would consider a 9 year remission from Rituxan monotherapy was extremely successful.
Your suggestion regarding stopping Ibrutinib is however very dangerous, because what works for one of us, doesn't necessarily work for others, as you have acknowledged. It's also not per the Professional Health Information of this site's community guidelines: support.healthunlocked.com/...
"Information from this site may inform your discussions as well as the exploration of treatment options with your healthcare professionals. You should always consult a healthcare professional if considering changing your medication or treatment." (My emphasis)
Other members have reported rapid onset of CLL symptoms after just a short time off Ibrutinib. I would say that we need much more evidence of how long to be be on Ibrutinib and how deep a remission is needed before it is safe to cease taking it. We'd be very foolish to do so without medical oversight.
Neil
This is unbelievably irresponsible and dangerous advice! Work with your doctor to make treatment decisions, not someone on the internet! If you don’t trust your doctor’s advice get a second opinion from a different doctor!
Completely agree. Just to say from a logical perspective it makes little sense to stop ibrutinib ever unless you become resistant to it or can’t tolerate the side effects. But a doctor should be the one to make that decision and to advice you and not just any doctor but a CLL specialist. There is some interest from some experts in the idea that if you get to a very deep response ideally with MRD negativity there may be a benefit or at least minimal costs from stopping for a while or rather intermittent treatment. The potential benefit would be less time to potentially get resistant. HOWEVER this is considered very theoretical and as far as I know is not being done at all at the moment but was proposed as a possible extension of the flair trial for ibrutinib users who didn’t get to MRD negativity in a trial. In my own view treatment strategies that are NOT fully proven yet should NOT be used outside of a trial context. Hillmen incidentally strongly feels that way about V+I which he is a massive advocate for IN A TRIAL but clearly said to me in his view it should not yet be used outside of a trial by anyone. Of course this is also a fast moving field. So although he said that to me just a couple of months ago he could easily have come to a different professional opinion at some point in the future. Doctors can’t force you to follow a certain path. And I’m certainly in favor of visiting different doctors for different opinions at times and in studying the data for yourself. But please please please NOBODY should be telling other people what to do on here. And NOBODY should make decisions solely on the basis of something they read on the internet even if it is on this excellent site!!
Ha ha, I am responsible for my own health, so I decide about my 4 stage CLL.
Second: I had 4 Oncologists......over a 9 year period.
The first treated me with Rituxan, 2 years, poor result.
The second one told me het was not surprised it did not work, he would have treated me wit a combi......
The third one advised me to take Imbruvica as a second opinion since another Oncologist advised my Rituxan again....which did not worked in the first place !
In my third year of Imbruvica I got infection after infection WBC 39...asked my Oncologist and he just did not paid attention, "just go on Ron with your 3 x 140 mg Imbruvica"
I stopped, since I felt I went to long with Imbruvica, as a result my WBC plunged to a healthy 6.8 ! Imbruvica is great but also a very toxic product, as all chemo's.
I requested for another Oncologist, told him the story, his opinion: great, lets monitor with monthly blood test , you took the right decision Ron.......
So, here you have it, all the so called specialists have different opinions and that tells the story, I think as a human being you are responsible for your own body in the first place, we all received brains to use them and not depend solely on Doctors.
I case you like to widen your outlook: Google Professor Seyfried.....thanks.
I did Google Prof Seyfried and found this article debunking his theory:
sciencebasedmedicine.org/ke...
some excerpts: " The first red flag is a claim that a ketogenic diet can treat cancer better than chemotherapy. The second, even bigger, red flag is on Dr. Seyfried’s Boston College web page:
In addition, Dr. Seyfried has worked with noted alternative health advocate Dr. Mercola to provide a thought-provoking discussion on the benefits of a ketogenic diet. Dr. Mercola provides a thorough synopsis of the talk on his website, and also includes the original audio recording of their conversation.
Über-quack Dr. Mercola? Oh, dear. His evident pride at having been interviewed by Dr. Mercola does not reflect well on Dr. Seyfried’s critical thinking skills and knowledge of medicine. Dr. Mercola sells quackery. He has promoted antivaccine views, breast cancer pseudoscience, and the rankest cancer quackery, such as that of Tullio Simoncini, who believes that all cancer is a fungus and that baking soda is the way to treat it, and the Gerson therapy, which involves massive doses of supplements and, of course, twice-a-day coffee enemas. Seriously, this is not the sort of person a legitimate scientist wants to associate himself with—ever—if he wants to be taken seriously. I can see a naive researcher making a mistake and, not realizing who Dr. Mercola is, agreeing to an interview, but that’s the sort of thing that a reputable scientist would do his best to disavow and distance himself from
Len
Well i eat mostly vegetarian, so will not turn to a ketogen diat.
But to keep on saying that there is not prove for natural products is putting your head in the sand. On ncbi, a regular site where a lot of investigation is publiced, you will find that there has been a lot of investigation in natural substances and that many of them can be helpful with cancer.
I don't see anyone saying "that there is not prove for natural products". There are indeed a lot of papers published on the NCBI/NIH website evaluating the effect of natural products on cancers, and quite a few specifically for CLL, which most interest us. The issue is that most of these report the effect of a natural product on cancer cells in vitro. CLL cells are more fragile than normal B-cells, that's why they often appear as smudge cells in blood tests - they are so fragile that they break in the blood smear test preparation. Lots of natural products show activity against CLL in vitro, but observing that in vivo (in the body) is another matter entirely. The natural product may even show promising results in animal trials, but fail in human subjects. Achieving effectiveness against CLL is particularly difficult, because CLL cells protect them selves in our nodes with what's termed stromal protection. Here's an interesting read about this challenging problem for CLL treatment: healthunlocked.com/cllsuppo...
Successfully treating other cancers with natural products that show very promising results in vitro also proves challenging for lots of reasons, including:
- It's hard to get high concentrations into the body; the natural product gets digested, doesn't get absorbed into the blood stream, gets neutralised by the liver or other mechanisms and so on
- The natural product is too toxic to other body cells
- Side effects are unacceptable
- It just doesn't work
More here: healthunlocked.com/cllsuppo...
Neil
Hi! I want to ask do u have any noticeable lymphadenopathy? Mainly neck region?
When i was diagnosed, i had lymphadenopathy everywhere in neck, armpits, chest, belly, groins, etc. Belly and chest is gone by diat and hyperthermia. Neck and armpits are still there. Groins are also there but smaller than it was before. The lymphnodes in my neck have also shrunk, but not so much. The biggest one is 4 cm.
Imbruvica is not a chemo it’s a target therapy. My doc wants me to stop it but first he needs to see if I am MRD am worried it may come back though so not keen on this MRD idea
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.
Hi Pepper, you were so kind as to answer me a year ago. How are you doing by now?
WoW, that is what we all want.
That is so good to hear. I had gazyva and low dose chemo pill for 6 months. Started at stage 4. Three months into treatment I felt better than in years. But relapsing now after only 6 months of remission. Am 73 years old and otherwise fit. I still work but fatigued. Am going to get ibrutinib next.
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
I absolutely get where you're coming from these drugs are a life saver but the serious side effects are terrible, that's y im dreading treatment.
Thanks for your comments Sushibruno. I hope that there are coming drugs like ibrutinib but that you only need to take for half a year ir so. The side effects will than be limited and you do not have to be afraid that the disease is rushing back as soon as you stop.
I am terrible with medication. I can use it one day and tell you the side effects without having read the information leaflet of the medication. Maybe i can earn money with that. 😃
I have no side effects on imbruvica and Punta Cana was a hot tub situation and u know it
Treatments extend our lives and most side effects are minor. Serious side effects are very rare in CLL treatments and can be managed in nearly all cases.
~chris
I have to say that is not what my CLL specialist here in Germany is telling me. She thinks in my case chemo would not be a good choice and immune therapie is still having too many side effects to be a long term option. She advises to go on so long as i can stand the pain and/or new medication is available.
Thank you chris, i think for people that are going to take powerful medications for the first time is a lil more frightening, but i do agree with you.
I have had 5 lines of CLL treatment, each a new powerful treatment...and each one carried a 'fear factor', I think its human nature ... none of us know what to expect.
~chris
It does not have to do with fear factor, as i speak for my self, but in the will to survive this disease as long as possible and with the least damage to your body. So you think about the pros and cons of each treatment for you personally. And for someone who in general reacts good on medication, the choice will sooner be to take it, which can be the best choice. But for someone who has a history of very severe sideeffects of medication, it can be a better choice to delay taking this same medication.
Your doctor was addressing your case, given your history of drug reactions. We all hope for a doctor that sees us as an individual and chooses approaches to treatment based on that.
Thank you for asking. I’m still cancer free. I still get IVIG every 4-6 weeks. I’ve had a successful mitral valve replacement. I run 3-5 miles every day. At 81, I’m doing fine.
Good to hear
Hi Anja,
I don't know who is behind this site........but: just Google Professor Seyfried, you will be surprised, you can do more then swallowing toxic drugs, believe me.
Ron
Thank you for the tip. But i am on the right track right now. I am having good results with a combination of hyperthermia, vit c infusionen and liposomal quercetin.
No sugar, a lot of fruits and vegetables. My tumar marker went down, my lymphenodes are slowly diminishing, my blood becomes better. Yes, i agree, there are other ways also. I am glad with that because i always react very badly on medication. Everyone has too choose his own way though.
stopping Ibrutinib
Looking for a resource re treatment for CLL/SLL
cll/sll or MZL? & Rituxan 
CLL and SLL in breast tissue
