CLL Support Association
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Have Relapsed From FCR and looking for best choice for Round Two

Was diagnosed cll 6 yrs ago. At age 49 first time Id ever been to doctor in my life. Living in Canada. Never went back to Doctor for 4 yrs didn't want to take any non natural treatments. Finally heart pounding in ears so loud couldn't watch Tv without sound cranked up. Spleen so large I looked 8 months pregnant. Lymph nodes all over were huge. And I couldn't walk more than a few steps . When I finally went to Emergency almost had to crawl in..They said I had highest white count they had seen and one of the lowest red. I had heard so much about Ibrutinib I was waiting for it to be approved to avoid chemo.. Didnt make it so settled for FCR. Took four rounds of FCR but was told I had to stop because I was needing transfusions every second day. I had AIHA. They recommended Br but I refused and never went back. Amazing enough I didn't run out of blood my body started to produce its own and had 2 and a half yrs of normal life. Still haven't even had a cold in ten yrs. My cll has returned over the last year Im 56 now I bruise like a banana my spleen is getting bigger by the week. But Ive heard so many negatives about Ibrutinib Im hoping I can put off treatment until venetoclax is main stream.. Was hoping eating cannabis oil pheonix tears or Rick Simpson oil might keep me going untill then. Has anyone even tried RSO here ? Or am I wasting my time reading to many crazy websites cures. I can function at work right now and have a normal life but I know last time it only took 4 months to take me to deaths door. And anyone been on Ibrutinib for years without miserable side effects.. I guess Im worried that if I have to come off Ibrutinb my body might be altered to the point that Ill be fighting more for survival than quality of life. Thanks in advance Colin

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Hi Colin

Ibrutinib is available and funded in all provinces except PEI. It would be a likely second line treatment. BR is also possible in some provinces.

Venetoclax will be decided on later this month, for very limited use in Canada, except Quebec...who do their own thing. Might be able to get it on private insurance, but it is a year from provincial funding...

Venteoclax should go to the FDA next year for broader approval in the U.S. secondline, and Canada may follow usually a year later...

Currently in Canada the request for venetoclax funding states...

As monotherapy for the treatment of patients with chronic lymphocytic leukemia (CLL) who have received at least one prior therapy and who have failed a B-Cell Receptor Inhibitor (BCRi)

cadth.ca/venclexta-chronic-...

The meeting is tomorrow, so the recommendation to fund might be made by the end of the month. This is the second time for venetoclax, the first time it failed to be approved.

There is also Zydelig (idelalisib) and rituxan, with similar limits, I'm on it at the moment and its been fine.

I didn't do well on Imbruvica (ibrutinib) but I'm in a very small minority, most patients do fine. I have friends who have been on it 4 and 5 years.

Don't leave too long to get treatment ...it gets tougher second and third rounds... bone marrow becomes damaged etc.

~chris

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Thanks Chris.. I know I left it too long the first time in fact the Doctor at the U of A in Alberta said I was too far along for any Ibrutinib trial last time..Seems that Ibrutinib is what they will recommend this time unless I have 17p from what I understand Venetoclax is possible then.This coming from someone who has never taken a asprin Seems every time I think Ibrutinib would be ok someone says its great but get used to skeletal aches headaches bleeding rash arterial fib but its wonderful...Been blessed my whole life never had headaches or aching anything. When I was going thru FCR doctor said I had next to nothing for immune system . Worked 12 hrs a day around everyone with bad colds and flu and never had so much as a sniffle. I always have boundless energy And I never get sick now. So the thought of being tied to taking pills that make you get symptoms just seems wrong.. But looks like the only path if I want to take traditional medicine.. Gritting my teeth and going thru FCR then flushing it from my body was at least only temporary.. But I know the clock is ticking.. Went Vegan a year ago but Im skin and bone now. 6 foot 3 150lbs. Great to hear you know people who have gone three or 4 yrs on Ibrutinib.. I thought I would find hundreds if not thousands of personal stories on net from Ibrutinb users havent had much luck

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If you are Vegan.. get your B12 and folate levels checked.. it might be an issue... it can cause anemia.

Important to know..

vegansociety.com/resources/...

~chris

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If you don't have a hematologist, oncologist or CLL expert you need

to get one, like yesterday. I was in denial too and came closer to death than you.

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Thanks Vicky what treatment are you taking now? At my worst I was bleeding from everywhere I mean everywhere..Eyes nose ect couldnt sleep because blood from gums was drying in my throat and couldnt swallow, had to have all windows open in dead of winter because I was burning up...I dont want to get that bad again before taking treatment of some sort.

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I lasted 2 months after 2 rounds of FCR which had no chance of

working because I am 17p/tp53 deleted, complex karyotype, IGVH unmutated,

and at least 3 more poor prognostic markers making me ultra high risk.

Something good did come out of the failed FCR, Venetoclax, which has

saved my life even though I can not tolerate the full dose of 400mgs. I

take 200 mgs. daily and recently finished six months of once monthly

rituximab infusions.

DX 7/21/16 with a malignant pleural effusion and salmonella infection.

Had 6 liters of fluid drained from my right lung and you want to talk

about death's door, well I know a thing or two about that.

All the best amigo!!

GET SOME HELP PLEASE!!

Nick

Miami Beach, Florida

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Wow you really were in rough shape.. Was at the cross cancer institute. I know they do their best. Wish venetoclax was the next option but cant have everything. Is encouraging to hear some that have managed well on ibrutinib. Cheers

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Hi Vick,

I have a friend in Miami who was just diagnosed with CLL. I'm trying to help her find a CLL expert hematologist. Can you say who is your specialist and where?

Thanks

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I use Dr Alvaro Alencar at University of Miami Comprehensive Cancer Center.

He’s phenomenal.

Jeff

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Thanks

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I have not met Dr. Alencar personally however I do know of

him from being at Sylvester with my lymphoma specialist

Dr. Jonathan Schatz. As you all know CLL is both a

leukemia as well as a lymphoma and I am at a great

risk for DLBCL or Richter's transformation hence Dr. Schatz

who comes from Sloan Kettering in NYC. I also have

a transplant Dr. at Sylvester, his name is Dr. Jimenez.

My primary oncologist/hematologist who diagnosed me

and has made all the astute and sagacious decisions

regarding my care and treatment I will not name here,

but if you can contact me off this site I will consider it

once I speak with him again.

Nick

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Hi Colin. I think you should get a CLL specialist in your province (usually found at the provincial cancer agency). And then, assuming he/she thinks you are ready for treatment again, go forward with Ibrutinib without any fears or regrets. You can always dose-reduce it or stop it if it turns out you are one of the people who has an extreme reaction with side effects. But most people seem to do fine with it. I have only been on it 7 weeks but am having no problems. I did a single cycle of FR before starting Ibrutinib. Doctors pulled me off FR because my cytopenias were so severe going in to treatment (anemia and neutropenia) and not improving after 1 cycle. I was transfusion-dependent and 95-99% infiltration of bone marrow before I started treatment - pretty far gone. The Ibrutinib turned that around really quickly!

I pursued various non-toxic treatment protocols, including CBD oil, before starting treatment. I do actually believe this non-toxic approach can work even though it did not work in my case. But I now realize you need everything going for you for the non-toxic approaches to halt/reverse progression. You need no intolerable stresses in your life, no toxic abusive relationships you are trapped in, and ideally you need a live-in support person who can attend to a lot of the duties when you are too weak - juicing, meal prep, research, supplements, shopping, etc. I did not have any of these conditions in my life at the time I was trying my non-toxic approaches. Big Pharma drugs will work regardless of what else is happening in your life. Natural remedies won't if you don't have harmony in your life across the board.

kim

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Im in a great place emotion wise heard cbd oil doesn't work hi THC oil eating 60 grams of indica oil over 90 days seems to be the recommended protocol .. I guess wouldnt hurt to try it although fairly expensive and would make traditional treatments be put on hold for three months. I figure thats about the maximum window I would have before having to turn to IBRUTINIB weather I liked it or not. I get lots of B12 and folic acid and feel great everyday but the spleen keeps growing and Im just starting to hear heart beats again in ears when I sit silently.. Thank you Colin

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I tried THC oil initially - and at the 90-day dosage you are discussing. I simply could not tolerate the psychoactive effects of THC at all, no matter how minuscule the dose. And you really do need a lot of THC to achieve the purported cancer-killing result. So I researched the whole CBD thing, found that it also has much purported cancer-killing benefit. Actually better than THC for some cancers. Ideal approach would be 1:1 THC:CBD. People who tell you CBD won't kill cancer simply have not done their homework. Anyway - much smaller doses of CBD are required, which also means its cheaper. Plus those of us who cannot tolerate THC have a way to use cannabis. All worth thinking about.

Here is the best clearest article I have ever come across explaining the different molecular pathways by which THC and CBD each halt cancer: patients4medicalmarijuana.w...

kim

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The question isn't whether THC and CBD can halt cancer, but whether they can halt or at least slow the progression of our particular cancer - CLL.

Those interested in the likely answer can investigate the involvement of the relevance of the cell receptors to CLL targeted by the active compounds in THC and CBD. Good luck!

Neil

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thanks for the info,,,you guys are great

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I've been taking both Ibrutinib and Venetoclax since January (the Venetoclax was added in April) and the only side effects I've had are a few mouth ulcers. If I were you, I wouldn't be too worried about starting Ibrutinib as most people tolerate it very well. You may have heard that disease progression after Ibrutinib is a problem but I understand this is where people become resistant to Ibrutinib rather than those stopping because of problematic side effects.

If your heart's OK (no Afib), I'd be happy if I were you if Ibrutinib was the recommended treatment. Popping a few pills every day is no big deal and any side effects are reversible or treatable if they do crop up.

Graham

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thanks Graham that really helps

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My husband also had failed FCR after 3 months. In USA he was approved for Imbruvica. He has CLL with p53/17 deletions.

He's been on Imbruvica since September and is feeling better than he has for the last 4 years.

We are thrilled with his response.

God bless and hope you will also have a good response should you be approved for this new medicine.

My hubby is 66 and only takes 2 tablets a day.

Blessings to you

Farrpottery

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GOD LOVE YOU

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CLLCOLIN

My hubby had bloodwork and our Dr gave us CTscan results. It was all good. His spleen reduced in size.

Lymph nodes are shrinking in groin and large intestine. Tumor behind his heart has shrunk.

He has energy for life.

Not fatigued.

Has an appetite.

Sleeping well.

We are so thankful for Ibrutinib after 2 failed chemos.

This will truly be Thanksgiving week.

We also met a man in the waiting room at the Dr office, about 70 who takes only 5 tablets a week of Ibrutinib. He's doing great and has had CLL for 17 years.

Gratefully yours

Farrpottery in the USA

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Thats amazing hope everything stays on the upswing. That really gives me some hope. Thank you

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I have been on Ibrutinib for a couple of years and yes, there are side effects but they reduce over time and are very tolerable. Within a week or two you should feel so much better as your nodes and spleen reduce in size.

The side effects of not having Ibrutinib treatment or the wrong treatment such as THC and CBD are much much worse - could be death!

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Thank you

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With due respect, why the aversion to medical care earlier in the disease process to save you from these critical scenarios?

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I guess at 56 just never went to doctors, grew up on farm if you cut yourself rub dirt in it mine set, Raised 100 cows never needed a vet .ALWAYS SAVED THEM WITH NUTRITION Ive never had a flu shot or inoculation, If I broke a bone I would think go see a doctor but other than it just wouldn't even come to mind I

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Got it. I was raised just the opposite. I was taken to the doctor for a paper cut!

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The bottom line here is do you want to live a long life, or do you want to continue to put yourself at risk by not taking the recommended treatments? As most are saying here, get yourself to a CLL specialist. Listen to him or her. Get off those sites that recommend non-traditional, unproven treatments. They will only end up confusing you and could create more harm than good. Take the Ibrutinib if it has been offered to you and learn how to control this disease as much as you can through a proper balanced diet and physical regime.

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Most here so far say ibutinib isnt so bad .Starts to give me hope hearing from you

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I understand you wanting to stay away from Drs. Until I had CLL my only contact was when I was pregnant, 4 yrs later and I still haven't been to my GP except for vaccinations. I've been lucky.

With Ibrutinib, everyone's experience is different, hopefully yours will be good. If it's not then you can stop it and try something else but it's worth a go. Good luck.

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Thank you. I would say Im 60/40 for taking ibrutinib.. Two weeks ago I said never.. I know I have to decide what I'm doing quickly, although cll seems to allow you time to at least ponder your options..Im sure everyone on this Forum was living their lives until that day they got the news from the doctor that they would be fighting a battle the rest of their life. Im sure happy Ive found this forum just to hear from other patients not just medical people.

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CLLCOLIN

After reading your journey I don't think Ibrutinib has any side effects as bad as what you've put yourself through avoiding treatment.

17 months on Ibrutinib. It is giving me life. My side effects are minor and easily manageable.

Virginia

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Thank you so much. Im not sure its just the side effects Im concerned with as doing something permanent to my body that will take me down a path where if I was to take something like the Gerson protocol they would say your body first have to overcome the prior treatments if possible, before our method can begin to help you. Of course some of the side effects worry me more the serious ones like arterial fib , hypertension, richters, stroke, being forced to take blood thinners if need be. Upper respiratory infections. On a internal basis blood platelets getting permanently larger. Other than a large spleen I feel wonderful now I just know from experience that six months from now unless I find something that at least slows progression I will be forced to accept defeat and succumb to going down the tradional medicine route. But you cant imagine hearing your opinion means the world to me.. Thanks Again Colin

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Ibrutinib has been an amazing lifesaver for my husband as a second line treatment after relapsing a few months post-FCR. He had some side effects after 6 months so we reduced his dosage & he is feeling better now than he has for years.

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That's Great hes feeling better. Seems like the people on Ibrutinib are willing to sort out some side effects to take advantage of the benefits of the drug. Im sure if there was a vote ibrutinib would get a thumbs up from the majority. I remember before FCR I was waiting and hoping and praying that I would get a chance to use it first line. Even bought stock in the company. It just seems that there is always a carrot being dangled to try something newer and better. Venetoclax being the one Im most interested in now or acalabrutinib. Of course Im sure over a longer test of these two drugs side effects will pop up that we dont know about now.. I guess the grass is always greener..So happy for your husband..

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I have been on ibruvica for 11 months and it has been good over all. We read the negative. People don't give the positive too much. It is good to start with it then move to Venetoclax if it does not work.

Acp196 in a trial is an option too.

Be well

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Thanks Hoffy, did you get the rash? How are your energy levels now?

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Hello. I relapsed after 15 post FCR and now taking IMBRUVICA FOR 20 months. Stable. Good quality of life. Muscle pains. I live in Montreal Quebec

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Thats great..just got a blood test by regular GP who sent me to lab. As The cross cancer clinic suggested as they have not seen me in over three years. The Doc said they would send my lab results in and refer me to cross. I guess I will hear my options soon. The biggest side effect Im worried about Ibrutinib is ILD interstitial lung desease. But I will talk to the horses mouth soon so will find out if venetoclax is possible..Dont know if Im 17p or not yet.. Muscle pains I could live with.. Brusing a little bit troubling only because I make my living dealing with public. But its sure great to hear about others that are happy with Ibrutinib.. Cheers

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I am into my 3rd month on Ibrutinib. And it has not caused me any problems at all except for one thing which may or may not be Ibrutinib-related: I have had a disabling muscle spasm in my back for nearly 6 weeks now. Have been living on pain killers. Physiotherapist says no actual injury to back at this point (although i did tweak my back with a lift, which is what started this spasm in motion). I have never experienced anything like this before - a muscle that goes into spasm for weeks and won't unwind. Ibrutinib can cause muscle pains and cramps. Some users have also remarked that their muscles, tendons, and ligaments in general seem stiffer, less flexible since starting Ibrutinib. And that can lead to injuries. I think that might have happened in my case too, with the original lift that tweaked my back. Was surprised when it happened. Didn't seem like something that should have caused distress.

But other than this back muscle spasm, which may or may not be due to Ibrutinib, I have not experienced any other problems. Would not even know I am taking anything. And it improved my blood numbers very quickly.

So I would say, don't rule out Ibruntinib if you need treatment and that's what's being offered. You may do quite well on it.

kim

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just got back from cross cancer they told me no chance of venetoclax and couldnt tell me if I was 17p deleted..Said they had a computer glitch..They said my spleen a basketball, but my red blood count 118. thats low range for normal women But being a guy I should be 135..Basically said its ibrutinib or nothing and started booking me to begin ibrutinib on Feb 5. Even though I told them from minute I walked in door Im not interested in taking it. So now what do I do if I cancel the appointment I will get blackballed. They are still upset I canceled treatment after they took me off fcr because I needed blood transfusions every two days. And was getting worse. The Dr Said I should be dead if I quit transfusions cold turkey with a red count of 60. Instead four years later I've been leading a completely Dr free existence. I assumed that was the whole Idea to live life normal. They felt I blew them off 4 years ago.or went to another province or country for blood because I couldnt be alive without the blood. Now if I say no they will never help me again .I dont understand. They have nothing I want to take at the moment and Im fine with that. Why is it a insult to say no thank you?

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I am a big believer in doing what YOU think is right for your body and your health, not what doctors tell you you must do or you will die if you don't. The number of times doctors have told me I will die if I don't do the thing they say... and they have always been wrong. And I am healthier and less poisoned for sticking to my own knowledge of what my body needs. HOWEVER... if you are at a point where you feel you need to do something from Big Pharma to turn your numbers around, then I would say why not try Ibrutinib if they are offering it? You can always quit (even though you're not supposed to). They don't have a gun to your head making you take it. And you may find that you RBCs increase and your spleen size decreases quite rapidly, as happened in my case. At which point it really is up to you if you continue. Lots of people on this forum will give me flack for that advice - but that's the way I would handle it. My body - my choice. Always.

Keep us posted!

kim

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thanks Kim that is great advice, My thought was lets use the snapshot off the testing I just did as a reference point. Come do a quick blood test again in two or three months see how fast I progressing and if its slow perhaps watch and wait for a year and maybe by then venetoclax is more readily available or perhaps acalabrutinib... Right now they said my red count is ok but very low platlets...Thanks again

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Thanks for the info Kim .Sorry about your back. From the doctors I have been watching on onc live Dr Furman mentioned side effects may start to really kick in in 7th month. Really would like to keep up to your progress. I have no idea when Cross might call me to come in and discuss my options. Any body having negative experience please wade in. I want clearest full picture I can before saying yes or no to this. Especailly younger patents who relapsed on fcr and this is round two

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Hey Colin, I just signed on this site & followed your posts... I'm 59 & went through 10 ...FCR chemo treatments & a year of just rituximab back in 09 for stage 4 CLL... all went well for almost 8 years until my wbc started climbing once again 6 months ago & a small bladder cancer ordeal in august .... I just started Imbruvica Nov 7 & my neck nodes shrank to normal in the first two weeks... I have just started to notice some small side effects like shortness of breath & loose stools & maybe some joint pain or I may be just getting older who really knows LOL... I was lucky to find a good Oncologist at my local hospital in 09 who has been looking after me ever since... I too never went to a doctor except for stiches in 20 years... I to have concerns on the side effects as well as the costs involved in the American health care system for continued use of Imbruvica for it is a bit pricy ...

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Wow I maybe should have stayed on rituximab longer..Hope things work out for you. hopefully you will keep letting us know your progress

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Not 17p deleted but 13q.. Still just taking natural treatments as Im not all that excited by ibrutinib side effects. Hoping for acalabrutinib if I wait longer

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