I am 49 and was dx. In April 2015. I have been on watch & wait or should I say watch & worry. I am being followed by a cll doctor at Dana Farber in Boston. My markers are 11q (less than 10 per cent), CD 38 positive, Zap 70 negative an unmutated ighv.
My only symptoms are many swollen lymph nodes ( neck, jaw line, under arms, groin) and a little tired at times. So, I went to see my doctor yesterday and after a ct scan he told me that I should start treatment soon ( he suggested November). I am so confused by this, as I understood that I long as I felt ok I should hold off on treatment. He does not want to start having issues as lymph nodes in liver area are swollen. He suggested 3 treatments
1. FCR ( 6 months)
2. FCR plus duvelisib aka. Ipi-145 (6 months of FCR plus 2 years of maintenance with duvelisib)
3. FCR plus ibrutinib ( 6 months of FCR plus lifelong maintenance with ibrutinib)
2 and 3 are trials
Has anyone done any of these?
What put me over the edge was that he said that FCR alone would only put me into remission for 2-3 years.
I thought that some people even with these markers were able to get much longer remissions.
Need to decide soon, I am pushing treatment for after the holidays, but he stated he wants to see me before to be sure things are ok.
Any help is greatly appreciated. Sorry for the rant.
Thank you in advance.
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Dinasantos
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Get a 2nd opinion...I am currently doing FCR-Lite after being on watch and wait for I think almost 3 years (?) but I know my oncologist only decided to do it after it really started to interfere with daily life.
I had huge painful nodules on the back of my head, where my sleep apnea mask went, huge painful ones on my neck, tons of them all over my body & even when I slept well with my mask, I would still fall asleep teaching after lunch. I would literally sleep about 8-9 hours, take a 1 1/2 hour nap daily on top of it...then sleep off and on all weekend.
My oncologist ruled EVERYTHING ELSE out for the extreme fatigue before finally deciding it was the CLL....
I can only speak from experience, but we are all different. However as I had similar symptoms and markers to you when first diagnosed in 2008, the experience may be relevant. It was the size of the lymph nodes in my abdomen that prompted treatment within a few months of diagnosis. FCR, 6 months, gave me a 2+ year remission. 8 months of FCR in 2011 gave me another 3+ years and this year, March, I started taking Ibrutinib and so far so good. I am older than you, 64 when diagnosed, but I have always been fit, and except during the chemo treatments, have felt good.
Do you have to decide now? All options seem to include FCR, so why not see how well you respond to the chemo.Then dependant on the time you are in remission you can decide how best to go on, there may be better (second generation BTK inhibitors) available by then, and remember that although Idrutinib and Duvelisib seem like miracle drugs, they haven't been tested for very long, so their long term effects are uncertain, and you are a very young man.
On the positive side new and improved treatments are being trialled all the time. It may sound strange to say, but it's a 'good' time to get CLL.
You wrote: I am being followed by a cll doctor at Dana Farber in Boston. My markers are 11q (less than 10 per cent), CD 38 positive, Zap 70 negative an unmutated ighv.
Hi Dinasantos,
You may want to consider asking for a 2nd opinion from Dr. Jennifer Brown at DF. She understands the complexities of the new targeted treatments vs. FCR. If she says FCR, then it will likely be your best choice.
We share some similar markers and in my non medical opinion the unmutated ighv and mixed karyotype is likely why your doctor is predicting a short PFS for you,
my wife has same prognostic indicators and was enrolled in the iCFR study at DF, has completed initial Ibrutinib treatment for 1 week followed by 1st of 6 monthly (3-day) infusions of FCR with virtually no side effects...AND the "grape sized" lymph nodes on her neck are now "pea-sized" and "lime-sized" lymphs in the abdomen no-longer distend the stomach, its flat (assuming those lymphs have shrunken as well). See posting yesterday on "Ibrutinib + FCR Study" where she is posting video while undergoing treatment on Patient Power web site. She would be happy to speak with you, perhaps have the PA managing patients on the iFCR study connect the two of you.
I would love to connect/speak with her. I wonder if we are both seeing the same Doctor. Are you in the Boston area? If so I would love to send my private email,phone number or maybe meet you at some point.
Dinasantos, yes, we're in Boston... Private contact details deleted by admin for your safety. PLEASE use this site's Private Messaging facility for this purpose - it's why we have it!
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I appreciate your confusion. My husband was dx. in 2013 at age 48 and is also in W&W. We are seeing a CLL doc at Dana Farber and also go once a year to MD Anderson in TX (so much new and emerging treatment info.so we thought 2 heads would be better than one). So far, both docs have been on the same page to W & W. Last year, my husband was dx and treated for a secondary cancer ( tonsil) with chemo & radiation at MGH. He is doing well and ironically, his lymph nodes and labs look the best they have since diagnosis. Maybe the chemo. helped push things back a bit. I am wondering why your Dana Farber doc (there are only 2 there so you must see the "other" one) recommended FCR? why not ibrutinib alone?
Thanks for your reply. Ibrutinib is not approved as a front line treatment for someone like me ( still fairly young, otherwise "healthy" and treatment naive. FCR along with ibrutinib is one of the trials offered. I did discuss cost with doctor if I chose ibrutinib, as insurance will not pay, and it is about $110 thousand a year :(. Wishing your husband a long w&w.
Hi Dinasantos. So sorry that I can't help you with your problems, all I know is I've got blood cancer (MDS), 2 rather pesky lung infections & osteoarthritis in lower spine ( ouch.. pain!) so know my future is bleak but I also know that we're born & we die , one cannot foretell nor decide when so ffs guys enjoy the time you have and don't get so fraught please, it's life
This is "NoMoreCLL". My incredibly supportive husband, "ltcbbaker" posted earlier.
I am in the trial at DF that combines FCR & Ibrutinib for first time treatment for young and fit patients. just had first round of FCR; been on Ibrutinib 13 days. Swollen lymph nodes melting away! Miraculous. Go see Dr David Marks or Dr Jennifer Brown @ DF to learn about trial.
Thank you for your reply. I have heard of Doctor Jennifer Brown but not Dr. David Marks. I am seeing Dr. Mathew Davids. And yes, I am looking to do FCR along with a trial, just not sure which one yet. Good luck with your treatment.
Clinical trials are a great way to access drugs that may not be approved for upwards of 10 years or more - and perhaps never where you live, due to the cost when they are approved. The best way to find suitable clinical trials is to check the relevant clinical trial websites listed below and ask your specialist if joining one is appropriate for you:
Unfortunately the clinical trial lists vary by country and it may take some effort to find whether there's a site convenient to you. Your GP would be most unlikely to know and even your specialist may not keep abreast of opportunities. I'd suggest you tell your specialist that the idea of joining a clinical trial appeals to you and ask your specialist to let you know when they consider you are nearing the need for treatment, so that you can start looking then.
If you are fortunate enough to go to one of the leading Cancer Institutes - just ask your doctor about the current trials they are conducting and that you are possibly interested.
Are you in the US? Another avenue is to checkout this link for all of the current US trials: ClinicalTrials.gov.
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