Hello Rene. I am not a doctor. From what I understand though, in countries where drugs like ibrutinib, acalabrutinib and venetoclax are available, these drugs individually or in combination would be preferred over fcr.
I doubt there are many, if any, Cll specialists in the U.S. giving fcr as a frontline therapy for any sort of unmutated Cll. Some doctors still prescribe fcr for those with mutated Cll and otherwise favorable genetics as it possibly curative in that population.
11q Cll, in particular, reportedly responds very well to btk inhibitor drugs like ibrutinib or acalabrutinib. If you have any of those choices in the Netherlands, I would consider insisting upon them if available to you or perhaps get a second opinion.
Here is an article that might be helpful to you in your discussions with your doctor. Acalabrutinib is a second generation ibrutinib type drug, so I think this study would likely apply to acalabrutinib as well, it is thought to be as effective as ibrutinib with less side effects.
I agree with your analysis and the suggestions from Spark_Plug & cajunjeff , that your 11Q will likely cause enlarged lymph nodes and spleen plus your UnMutated status will mean that the FCR may give a very short response to treatment.
We have one list of CLL expert doctors that mention:
Fritz Offner, MD, Gent University/University Hospital Gent, Gent
You may want to read the profile of Jm954 who may be able to make more suggestions about where to find additional advocates to help you in the EU or Belgium
SNIP from Jm954's profile "diagnosed with 11q del, unmutated CLL in 2013 at age 56 in UK when I was working as a NHS Healthcare Scientist in the role of Haematology Services Manager. This included responsibility for the Haematology laboratories and Haem-Onc clinical trials including those for CLL. This background has given me a thorough understanding of all aspects of CLL and other haematological disorders including diagnostics, imaging and treatments.
I continue to keep myself up to date with Haematology and CLL in particular by reading and attending conferences. I have been a patient advocate for several years, working with various charities but particularly CLL Support, the only CLL specific UK charity. "
If you aren't able to access Ibrutinib/Acalabrutinib, would consider joining a clinical trial there are many specialists/centers in the Netherlands participating, below is a link to one, CLL17 is a large international trial
Ibrutinib Monotherapy Versus Fixed-duration Venetoclax Plus Obinutuzumab Versus Fixed-duration Ibrutinib Plus Venetoclax in Patients With Previously Untreated Chronic Lymphocytic Leukaemia (CLL) (CLL17)
René, if your specialist recommends FCR, I would recommend checking out if you can join this international clinical trial Alpek has suggested. It is run by the well respected German CLL Study Group, based in Köln, just across your border.
It's unfortunately the case that in most countries with universal health systems such as the Netherlands, if you are unmutated IGHV, you are required to first go through a cheaper, older style 'chemo' treatment like FCR, which might give you a few years of remission, after which you qualify for a targeted therapy treatment. However, in your case, I would be surprised if FCR is recommended, as with an ATM deletion, you are unlikely to respond well to FCR. That FISH and ATM deletion checking has been done, implies that the test results may make a targeted therapy treatment available to you, rather than FCR. Also, if you have private health insurance, check what treatment options that can provide for you.
I can see you have been following the Forum for a couple of years, I think this is your first post.
Welcome!
All questions are important, you must ask!
And you ask an important question!
Above replies are very helpful with useful links. Check them all out. You will learn useful facts with which to have a useful discussion with your Dr's.
FCR is still used. I had it in 2018. It was easy and I am in my 5th year of remission.
BUT...
I am 13q mutated. FCR does well for some with that CLL type.
You are 11q unmutated.
It would be helpful to you to consider other treatment options.
The treatment options are complex. We are not experts here, or indeed on Facebook or other social media support platforms.
The best help we can give you, in my opinion, is to suggest you get a 2nd opinion! Preferably from a CLL expert. You must have them in Holland.
It is OK to ask any questions about treatment choice. It is essential you are confident in the choice made too. That is a proper conversation to have with your Doctor.
You are at important point in your CLL journey. Treatment choice is important.
Is there a possibility for second opinion ? You need good advise as far as treatments available to you and time to understand it all and then make educated decision best for you.
I would personally question why FCR and not Acalabrutinib, Obinutuzimab,Venetoclax combination as your best choice ? Yes, you have every right to ask questions.
You may already know about Hematon, "a patient organization for people with a hemato-oncological disorder" in The Netherlands. Here is a link to the section of its website for CLL patients.
The second resource that could be useful to you is an article that appeared in the journal Leukemia & Lymphoma, Volume 63, 2022 - Issue 10 in June 2022.
"Management of patients with chronic lymphocytic leukemia (CLL) is changing due to considerable advances in the therapeutic armamentarium, and new therapies will possibly continue to emerge in the near future. Therefore, the CLL working group of the Dutch-Belgium Haemato-Oncology Cooperative Group for Adults in the Netherlands (HOVON) necessitated revising the Dutch CLL guidelines. The current guideline is based on the expert opinion of the HOVON CLL working group members and focusses on well-designed clinical trials taking into account efficacy with special emphasis on toxicity, treatment duration and treatment intensity. This article provides recommendations on diagnosis, treatment strategies in front-line and relapsed setting and provides supportive care measurements during novel-based therapies as well as for infectious CLL-related complications. The recommendations presented here are intended to provide guidance for the management of CLL patients in the Netherlands, and take into account the availability of treatment strategies at the time of this publication."
Unfortunately, the full article is behind a paywall. However, a list of practitioners who worked on the recommendations for the HOVON working group is included in the author list and that could give you a lead should you be seeking a second opinion nearby.
Hi again, Rene, I've just realised you may have used your real name as your username. If so, to protect your privacy, you may wish to lock your post to our community so it won't be available for anyone on the open internet to read and/or you may wish to change your username to something more anonymous.
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some doctor’s recommendation FCR if they don’t have other medication which is usually more expensive (though manufacturers will help financially and pan society can also help with cost). If you are unmutated then I would recommend something other than FCR. Tell your doctor you would like other options if possible. Many doctors don’t give FCR anymore though some have had good results but not as likely if you’re unmutated. Other options are better when you’re unmutated. I’m unmutated and Rituxan and Venclexta work well for me.
Rene, My cousin's husband had FCR in Brussel but that was some 18 years ago. He is now beginning to show symptoms of CLL returning but has had those years of remission. FCR is an old approach to treatment and there are better treatments available now.
Rene, you sent me to Mr. Google for some further information about FCR: "How effective is FCR treatment for CLL? The effectiveness of first-line FCR treatment is indisputable. The overall response rate is between 90 and 95%, the complete remission rate (CR) is 44–72% . We also found FCR treatment to be very effective. The complete remission rate of those treated in first line was 79%." In my layman's opinion, it is a very good treatment, but maybe not the most current therapy. I was treated with Obinutuzumab and Venclexta and the overall response rate was 85% in the venetoclax-plus-obinutuzumab therapy. All the best to you in your new CLL journey.
But my research would suggest approximately 25% find FCR easy. Many do not. It carries significant risks, some are life long. There is also a treatment related mortality risk.
I found the decision to undertake FCR very difficult. I had a 2nd opinion from a CLL super specialist. Initially I was frightened of FCR. But I was fortunate, and by 4th cycle I was back mountain biking. All my CLL symptoms vanished in 2 weeks. It was incredible.
But as I say, it is not everyone's experience.
Looking at the responses above, seems the feeling is to avoid FCR in your case.
I would not disagree.
Please remember we are not Doctors. We are patients, many with expertise!
Diane and René,I would not recommend that website, because the owner does not acknowledge that surgery can cure cancer, which it most definitely can for solid tumours. He makes much of his refusal of what is known as adjuvant therapy (chemo to clean up any potentially missed cancer cells after surgery) and inaccurately credits his plant based diet as the reason for his survival, when it was calculated by a cancer surgeon to be about 64% chance from what was shared. The chemo he refused would have improved his odds of survival to around 76 to 80%. See healthunlocked.com/cllsuppo...
You also won't get reliable survival statistics from that website as DanBro provided for FCR treatment above healthunlocked.com/cllsuppo... or as is available for other CLL treatments from trial data. Thanks to the analysis presented in the second video in my above reference, you can see that the owner removes testimonials of people following his plant based diet when they die, so you get a misleading impression of the supposed effectiveness of the dietary advice provided. While the dietary advice may improve the health of those attracted to his site, CLL is considered an incurable cancer for good reasons. The time to benefit from lifestyle changes, such as dietary changes, are when you are diagnosed, not when treatment has been recommended.
I have the same markers as you and was diagnosed a month later than you. I also have a complex karyotype. I had obinatuzamab and venetoclax starting the end of January 2001. I am now uMRD. My research found we don’t do well on FCR. Best of luck with your treatment. USA Florida
Yes. You can refuse a treatment. I was put on acalabrutinib and venetoclex for 2 years and I am now in a deep remission according to my Dana Farber oncologist Dr. Matthew Davids. He was responsible for the trial at Dana Farber using those two drugs and because it had such a high efficacy rate my doctor here at Vanderbilt agreed to let me take it. Each drug is FDA approved individually but not together. My insurance agreed to cover the cost of both drugs. I was still out of pocket for $16,000 / year.Good luck to you!
Don't even think of going with FCR. Go for ibrutinib/acalabrutinib and venetoclax. I have been in complete remission for 5 years after a 15 month treatment (CAPTIVATE trial). I'll do it again if I ever relapse.
I am in the U.S. FCR is rarely given as an option. I am unmutated and deletion 13. When I needed my first treatment in 2020, I chose Obinutuzamab and Venetaclax. I am not sure if that combo is an option in the Netherlands. It gave me great results. Good luck with whatever you decide.
Not to scare you but motivation to try not to do FCR is that there is a chance the newer targeted drugs may not work as well 2nd line. Also, there is a long term risk of MDS with FCR according to Dr. Furman.
All medications come with side effects, some more some less.
I think that while you are making a decision you should consider if you have other health issues for which you might also be taking medications. So you need to speak with your pharmacist as well to see how the medications for your pre-existing conditions are going to react with the new CLL medications that you will be prescribed.
Normally your CLL expert will know your overall health history but he will not spend the time to look at how the medications for other conditions will contradict with the one he will suggest for you. His job is to find you the best medicine that treats CLL.
The pharmacist can look at all the medications and let you know which one will work best for you considering your overall health conditions. Combine the pharmacist information with all the good advices you have received from the experts knowledge on this forum. Hopefully then it will be easier for you to choose.
Wish you the best of the best as you embark on this new journey.
Here is a recent article with Netherlands experts' recommendation. pubmed.ncbi.nlm.nih.gov/357... your oncologist work from this. I can get you the full text if you would like.
Fellow Dutch Cll patient here. Dx since 2000. I would strongly recommend that you use all the information you can get before treatment starts. It helps if your hematologist sees more cll patients and folllows latest updates on treatment. Maybe you are eligible for a Hovon trial. More info:
Hi Rene, I am also 11q/unmutated. When I was diagnosed in 2014, I had to get FCR as a first line treatment. The response was good, but short lived. If you can get Venetclox/Rituxan or Acalabruitnib you may do better. The studies I’ve read indicate they both are effective as frontline treatments. Wishing you all the best
René lives in the Netherlands and the availability of treatment drugs varies by country. Even where the new, targeted therapy 'non-chemo' drugs are available, often you can only access them when you have markers that show that you won't respond to the standard 'chemo' approaches, typically BR and FCR, which is when you have 17p del or mutated TP53 markers.
AussieNeil, That’s what my doctor told me yesterday. Although acalabrutinib has been placed in insured package, the treatment schedule for cll must be followed. So chemo can only be skipped by 17p/tp53.
My chromosome mutation status is 1,5 years old, they now want first a recent one, those results can take up to a month.
If no 17p/tp53 has occurred is a trail the only thing that can keep me from the chemo. She keeps an eye one that for me.
Are you being treated with FCR? Did they redo the 17p/tp53 testing?
I'm in Netherlands too...seen at LUMC. Which hospital for you?
My understanding is we still have no choice in treatment (only FCR) unless p53 mutated or those who are IGHV unmutated and "unfit". See hematologienederland.nl/wp-...
Hello, i could start with FCR, but could also wait a while, to go on holiday abroad, because she advised not to go abroad during those 6 months due to possible inflammations etc. So i have a appointment on Juli 1 after my vacation.
The test results were still the same:
- chr. 11 Atm del.
- chr. 13 different del.
The leukocytes were 243 last month, but my hemoglobin is now suddenly at 7.6
My hospital is in Hoofddorp, which collaborates with Vumc.
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