CLL Support Association

Watch and wait is over

Hi all, I was diagnosed 3 years ago with CLL, I am now 53 yo and with wbc up and platelets down as well as swollen lymph nodes and enlarged spleen my Doctor has started me on treatments. I am going to Dana Farber and taking part of a study that combines Ibrutinib with standard FCR treatment. I will take the Ibrutinib daily for the next 2 years and finished my 1st cycle of FCR 12/19. After going back for my first follow up my wbc dropped from 179,000 to 6,800, lymph nodes are markedly smaller and my spleen has gone down. I was pretty psyched. I will have FCR every 4 weeks for 3 days for the next 5 months. I was just wondering if anyone else out there is or has been a part of the IFCR study. Would love to be able to compare notes.

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I’m starting treatment next month after 5 years, but not sure what treatment I am having but it similar to your I’ll let you know

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Thanks Nanapapa6, are you going to Dana Farber?

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Positive start Mosaicgigi! Keep us posted, I am likely to start on the UK FLAIR trial this year should my readings keep deteriorating at the current rate. Will share with all how that goes. Happy New year!

UK Sparky

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Happy new year Marc. Hoping all goes well. R

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Thanks happy new year to you too Roger!

UK Sparky

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Best of luck UK-Sparky!

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That sounds a promising treatment, hope all goes well for you.

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Thank you Jm954, me too! Happy New Year!

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Hi I am starting screening for Flair trial in this month. Will keep the site posted. Good luck with the FCR and Ibrutinib it sounds good to me. Happy new year.

Ann

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Good luck to you as well, may the New Year bring us All good health!

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That's a very interesting treatment. Keep us posted!

Virginia

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Dr. Davids will be giving a talk at a patient education forum on 1/6/18 at Dana Faber and he may discuss this trial. See CLL Society for details.

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Cllcanada recently posted a video of dr Davids discussing the very promising results from your DF trial of IFCR. As I recall, they have 83% MRD negative. You might want to look it up from a few days ago

Best of luck. It sounds like a promising treatment!

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Yes, that’s what I was told by Dr Jennifer Brown at DF. The study is for first line treatment. I am hoping for a cure or at the very least a very long remission. I will check out the video. Thanks!

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Happy New Year to you and all of us who are on watch and wait and indeed wonder??? It is good to see you are so forthcoming over what must be a very trying period for you, happily you are are quite young and though it is bad enough being diagnosed as such you have a good prognosis. Must be very difficult dealing with the disease and also the trial. Onwards and upwards and good fortune for a successful trial. Be strong. Dick.

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Thanks Ricardo39, I found comfort in others sharing their stories and want to do the same. I’m hoping to connect with someone who has done the same study as I am having a couple side effects, and want to see what their experiences are! Best to you and a Happy New Year!

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Good luck with your treatment. I know someone who also is part of this group who did that same trial at DF. As far as I know she did well and is doing well. Hopefully she will see your post and she will reply. I also did my treatment at DF but chose to go with the other trial that was being offered at the time. Are there any other trials still being offered?

Doctor Brown and Doctor David’s are both great, don’t know which one you are seeing but u can’t go wrong with either one.

Chin up, it’s not an easy road but u CAN do it🙏🙏🙏

Dina

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Thanks Dina! I hope she sees my post too! Are you done with your trial? Just wondering what it was and how you made out. I see Dr Brown, she is great. I feel like I’m in good hands at DF, they are fabulous there.

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Yes, I am done. Had to stop early due to some issues. Going for a cat scan in a few weeks. The initial results were good, hoping for continued good results. 🙏🙏🙏

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Best of luck, I will keep good thoughts and prayers for you.

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There are a couple of threads about the IFCR trial on CLLForum.com

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