So 8 years from diagnosis and a past year where I was no longer considering myself Superwoman who had inadvertently created the cure for the common cold...I've had all those missed coughs and colds now and even topped it off with sepsis, and managed to get one very angry tonsil through it all, that complained so loudly it just had to go.... But not without a fight I can assure you! (Suffice to say having extreme bleeding following surgery is just a tad horrific!!)
But once healed and recovered from the 12 months from hell I was looking forward to a restful summer, sadly my remaining tonsil had other ideas (and no, don't know why it wasn't removed with the other, I really should have asked!) It's quickly taken up the mantle of being a pain in the neck! Literally...and the solution.... treatment time. Meanwhile my CLL is actually quite stable. What a conundrum, here I am facing the chemo primarily for a naughty tonsil!
Anyone else been in a similar situation? And I am really struggling to know what to do for the best....agree to the trial which is years!! Or the shorter FCR? How have others come to decide which path to tip toe down? (I'm definitely not rushing to get on either, tbh, and I know many of you will groan, but I'd wanted to do this holistically and have been really improving my diet, lifestyle etc)
Any thoughts appreciated.
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AnjiP
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Hi there! I have not had treatment as of yet, but I used to be of the opinion that since I had favorable low risk genetics that if I ever needed treatment, I would go FCR because I could get maybe a 10 year remission and possible cure. After research and speaking with a friend who is in the oncology pharmaceutical business, my opinion has changed. He attends oncology conferences and knows some CLL specialists personally.
Dr. Furman is against FCR. Other doctors are not. What I have recently learned is that the standard of care will be evolving to combination therapies...especially for high risk genetics.
Hope this helps! Sometimes the more you read/watch, the harder it is to decide!! 😎
Thank you so much for your reply and the video, I haven't time to watch fully as I am now late for work....but I will! And your comments have given me food for thought. I'm in the UK, it's the FLAIR trial with 4 options for treatment, I think I'd felt like a lamb being led to slow slaughter but I now realise that I should research more fully and maybe delay this somewhat until I feel I'm making the best choice for me! I'm going to really research this starting with the video!
Just in cycle 5 of 6 in FCR side of FLAIR trial. I was equally reluctant and thought long and hard. It's been ok, apart from cycle 1 high temperature hospital episode and initial tiredness. I have a CLL specialist and a lovely key worker who make all the difference. At the end of the day the computer decides so assess all the possibilities. The trial decision was based on, well hopefully they will follow through and at least it will help someone in the future.
I did worry about multiple scans, but by then I had several so hey ho, on we go. I just hope that remission Is long and other kinder treatments come along. In the meantime cosmic ordering, cutting out sugar and being Mrs Positive whilst I paint. Go for it, we are more likely to be knocked by by opportunist infections, so be aware of limitations. For me it was avoiding soil bourne bugs and infectious small creatures. From my experience it does help to have a mentor who will listen without being judgemental or hysterical. All the best.
Great video! Now making me uncomfortable about starting FR in just 2 weeks. Would like to find a way to get Ibrutinib instead. I agree with Furman's assessment that there is no longer any role for chemo and its myelotoxicity in current treatment era for CLL. But so far, I have not been able to find a way to get IBR in Canada without 17p del or myelodysplasia. And I need to start treatment urgently. Am waiting on results of BMB to check for myelodysplasia, but not deemed likely.
It seems the various Canadian provinces are so close to approving Ibrutinib for first line treatment... it could seemingly happen any time. Although as you say, 1 or 2 provinces will go first. But my province could certainly be one of those first to approve, I would think. I could find myself in the middle of my myelotoxic FR treatment, possibly causing permanent bone marrow damage, when IBR gets approved.
My FISH test did not test for Notch 1. And I am reading that Notch 1 mutation in conjunction with Trisomy 12 indicates high risk for Richter's transformation. Am thinking of asking for Notch 1 to be tested as possible grounds of IBR instead of chemo.
You can ask..but you won't get it in Canada, unless they are running a study. Most people I know go to the U.S. for testing... Its a special test.. not FISH.
NOTCH1 is a RT marker, but there are many more ... The real baddy is the IGHV subtype..if it is VH4-39 it carries about a 20 times greater chance of transformation, Again not something they test for clinically.
You might think about sending blood to CGI, they do a lot of advanced genetics for clinical trials in the U.S.
They have a menu of test, and a blue plate special, called CLL Complete... the cost vary in the $4000-$6000 U.S. ball park, plus special sample shipping...
I know a number of Canadians that have this done... the company is very good from what patients tell me.
So, if you are NOTCH1 mutated..how would that effect you treatment options? It doesn't.
I'm a Richter's patient and frankly if you transform you go with the tsunami and hope for the best.
~chris
About CGI
I'm not endorsing this company...just they do a ton of work in CLL
I too wanted to address it holistically. Have been designing and refining my non-toxic health regimen, mainly with goal of preventing progression. But progression kicked in Big Time. I now have severe cytopenias (anemia and neutropenia) and must treat. I am a person who really wants no products from Big Pharma in my body ever. So this has all been very difficult for me.
After much research and thought I am doing FR, and both my CLL specialist and hematologist are fine with that. FCR would be their first choice, but it wasn't mine for reasons of toxicity, and they both thought FR was "next best thing." The toxicity is reduced to a degree I find acceptable (given that I have to treat) by going FR.
FCR is considered the "Gold Standard" simply because it gives the longest remission. But what is that long remission really worth, I wonder, if you develop a second cancer because of the FCR? And which I might dodge with FR. Also (and this was the most important thing for me) FCR's designation as Gold Standard is from a PAST ERA in which length of remission was EVERYTHING because nothing better was looming on the horizon. We are in a completely different age now with new & better drugs coming out the pipeline and more on the way. The treatment focus needs to shift to minimizing toxicity, not the old standard of maximizing length of remission. I am in Canada, and I figure that if I get a 5 year remission from doing FR (or even just a 3 year remission!), by the time I need to treat again, I will have access to better drugs, non-chemo drugs, and far less toxic. So my concern for my FIRST treatment is to minimize toxicity so that I don't do permanent damage to other aspects of my health and body. Apart from the CLL, I have no chronic health issues, and would rather not develop any as a result of treatment.
As for your question about FCR or the trial... I would need to know what the trial is. Most trials require multiple CT scans as part of the trial protocol for monitoring degree of infiltration or disappearance. I don't want any CT scans and have had none so far since ionizing radiation is carcinogenic and cumulative over lifetime. So this is a problem for me with trials. Other people, less so.
I had a read your previous posts and, whilst you may not have had treatment, your CLL has certainly kept you busy and not in a good way!
I think you've got a couple of things to think about.
The first is whether your remaining tonsil can be managed without having systemic treatment. I say this because you say your CLL is otherwise stable although you have mentioned anaemia and sweats previously. Any possible options there should be considered first but I can understand that you would prefer not to have surgery after your previous experience. Radiotherapy can be useful in treating isolated nodes that are a problem but your Dr would probably not recommend it for a tonsil as it can lead to a perpetual dry mouth which is a very, very miserable condition.
The second is about which treatment to have and as this would be your first line treatment then the guidance says it would be FCR if your doctor feels you're fit enough. BUT before any decision you really need to know your status regarding CLL genetics and IgHv because this will massively influence your treatment decision. There are some patients for whom their genetics means that FCR will possibly give 10+years of remission and others for whom it would be completely ineffective.
I have poor genetics and I would have been lucky to get 4 years on FCR so I opted for a trial and got Ibrutinib which I was pleased about. It's not been easy (is any treatment?) but I'm hoping for longer than 4 years. If you're in UK and you're not 17p/p53 then the FLAIR trial may be a good option as it now has two more non chemo arms including one with Venetoclax/Ibrutinib. If you are more than 20% 17p/p53 then you should have Ibrutinib as per NICE guidance.
There's a lot to talk to your doctor about. Please let us know how you are and what you decide.
Hello, for my first treatment I have joined the Ibrutinib/Venetoclax trial which I am grateful for. Ever since I was diagnosed 3 years ago I had hoped there would be an option other than toxic chemotherapy which being 11q, wasn't necessarily going to give me a long remission. Couldn't believe my luck when right when I need treatment, I am offered the last place on the current trial and start on Monday. I hope whatever choice you make you have a long remission. Good luck.
Anjip,I think if you just wait and be sure of all your markers. And get a cll specialist you can make the right decision. Can't believe they left 1 tonsil. I hope you the very best .
Hi I just watched Dr.Furman's video, thanks so much for posting this.
I am still on w&w but I am a bit confused about the effect of ibrutinib on coagulation/platelets.
This time last year I had a stroke/bleed from a Cavernoma and have been advised to avoid anything that thins the blood, is this likely to affect what treatment I can have should I need it?
If you can get on a clinical trial with targeted Therapy in my opinion is much better. It is important to study all the long term side effects of FCR. Dr. Furman, City of Hope, UC San Diego all avoid FCR due to it's damage to the bone marrow and secondary cancers.
I am personally on a trial of Ibruvica and Venetoclax out of UC San Diego. I am doing well so far and my numbers are good. The side effects have not been bad.
"The times are changing.... " The hope with my trial and others like it is that the combo can get the CLL down enough to get off treatment for a while. Like Chemo.
Look at my old posts. There is a great video from Ohio State.
Also, I know someone who went on a Vegan low sugar diet and dropped her WBC from 150 to 50 over 6 months. It is a very very hard diet though. I tried it,
You didn't say anything about your blood counts, but I can tell you that IVIG (Intravenous Immunoglobulin) therapy helped clear up ongoing infections for me. I did have to start treatment, but only because of problematic lymph nodes in my neck/jaw area, not due to other "regular" infections. I suggest you ask your CLL specialist about IVIG infusions to see if they will clear up your tonsillitis and other infections, before you start chemo treatment. Your bloodwork should include your Immunoglobulin levels and the "G" immunoglobulin is the one that they want to boost up if it is below 500. Before IVIG treatment, my IGG averaged around 250; after treatment around 600 and it definitely helped tamp down the infections. Best of luck.
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