diagnosed in January

Good day all, I was Dx in January after routine blood tests just most here I suspect. It was like a freight train had hit me and all I could do was wallow in my own misery. I'm still struggling but the more informed I become the more hopeful I am. I'm 49 and pretty healthy, I eat right and workout regularly, 3 kids at home here in Oregon...9,12 & 14. My oncologist didn't really tell me what flavor of CLL I had so after reading up on everything, I learned about all the different chromosome deletions and mutations, turns out I have high risk CLL...Hurray! I'm 11q deleted, unmutated, trisomy 12 ( whatever that is ) not sure yet but I also think I am a complex karyotype, not sue what that is yet either but will find out tomorrow. I have swollen lymph nodes throughout my body, nothing too significant, although a couple in my neck that show a little bit, prolly more to me than anyone else. I am seeing a specialist here in Oregon, Dr. Sharman.... he's one of the best from what I read, very smart guy, in fact I see him tomorrow for a check up. I'm still on W & W with WBC at 16k ALC 9.3 all the rest are normal, so I feel like I have some time....maybe. the 11q - unmutated scares me, but what r you gonna do, right. it could be worse I could be 17p del. Nonetheless, it seems the newer drugs may overcome 11q and/or 17p, I hope. I see some on Ibrutinib for years doing fine but not sure if they're 11q deleted or not, anyone out there 11q del on Ibrutinib...? how's it going ? I've read some really good things about the new drug ACP - 196 and ventoclax but they seem to be for 17 p del patients only, other than some trials for treatment naïve patients like me. Anyway just wanted to say hello and get some feedback on 11q and unmutated CCLer's. As time goes by I do find I am not crying in my beer as much I was, but it's still the first thought in my head when I wake and the last thought before I go to sleep....sad I know but I'm learning to live with this new monkey on my back at all times, slowly but surely. Haaving a great family helps! thank you for listening to me ramble on.


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18 Replies

  • Hi,

    You'll get lots of reply with a lot more encouraging thoughts and information. So for the time being just wanted to say I was also "officially" diagnosed in January and I'm also on the same coast as you...except more down south. You said you are 11q but it could be worse if you were 17p....well I'm 17p delete!....LOL! Its ok...at first we're all devastated but after a while, I said "Que sera-sera" and know that whatever happens it will be just fine. Independently from all the possible treatments that are being developed. Glad to hear you have access to great Doctors where you live. Coincidentallly at one point I considered relocating to the OR/WA area. Anyway wish you the best!

  • I can be an insensitive moron as well having CLL....my apologies. I didn't mean to offend, just ranting on a bit. I grew up in the bay area, downtown SF in fact, I loved it, but its not the city I grew up in anymore. Oregon is a great place to live.... except for all the rain Oct - April....but May -Sept is awesome! I'm sorry your in the same boat as me...you sound much more positive than I am....I need to work on that. I wish you the best also, thanks for the reply.

  • Oh no please dont say that about yourself and I definitely was not offended at all, in fact it prompted me to show that with a little time and information it is possible for us all, to be feeling a lot more accepting of this "situation".

    And yes I agree with you, the NW is beatiful, in 2013 I spent about 4 months in Seattle and it was Perfect! I'm in SoCal now but believe it or not, my favorite months are the cooler-cloudier months. Kind of ironic....I know.

    Best Regards.

  • Hi, and welcome. I'm not 11q deleted but I am 17p deleted, unmutated and with complex karyotypes. And I'm 48 with a 16 year old, so we have a lot in common. I was diagnosed in Dec, but I went from WBC of ~16K to needing treatment by March. I hobbled along with my health in steady decline until June and travel to OSU via a clinical trial (and I post about this frequently). I was lucky to get my head wrapped around it and I stopped crying in January. I decided to find the best doctor and do what he tells me to do. I try to take one day at a time and I have a very clear goal of extending my runway long enough so I can outrun this while science advances. You are in good hands and sounds like you have a lot of support, so that is great. Hang in there, and always know you can, and it's healthy to get it out and ramble here.

  • Hi I know it's easy to say don't let it get to you ,I was on watch and wait for five years and spent the whole five years worrying myself sick so please don't do the same . Most specialists are brilliant so You will get well looked after , some people have gone longer on w/w so enjoy yourself and if u haven't lost weight , had night sweats and your white cell count is only slowly creeping up you will be fine . They started my treatment when my hb 105 wcc243 neutrophils 5.7 platelets171 , I got on the flair trial in the uk Rituximab 6 monthly doses along with Ibrutinib Everyday , good luck you will be fine

  • Hello Chuddie48

    Do you mind me asking you, i have been on the Flair trial Phase 3 for 6 weeks now, diagnosed 2 years ago ( age 53)

    I have had quite a few days of pretty hard core

    Muscle and bone pain. In varying degrees, which i know is one of the listed side effects of Ibrutinib!

    Have you experianced this at all i wonder.

    Many thanks


  • Just a little bit of both and had some blood spots on my arms and legs little red dots ,bit of the runs , apart from that not too bad

  • Dr. Sharman is one of the best in the US. You will be in very good hands. If you happen to read this before your appointment consider taking a recording device or using a recording app o your phone during the appointment. It really helps to be able to go home and listen to everything said again. Let us know how the appointment goes.

  • Hi from across the pond,

    The most important thing to remember is the first word .... Chronic. In general this us a sliw burner, typically taking many months/years to progress. I was treated with FCR in July 2012. Now possibly seeing some initial signs of change but some people live fir many years on one course. As to Ibrutinib, Idelilisab, Venetoclax and the other new therapies then the future looks even better.

    Rants and questions are part of life here, no need for apologies.

    Best wishes, rob

  • Hi Garrick and a warm welcome!

    The others have covered it brilliantly so I just wanted to say long may you be on 'Watch & Dodge'. Many of us are as thompsonellen says keeping going hoping to outrun this whilst science advances. And advancing it is thankfully! The landscape looks a whole lot brighter since I was diagnosed 4 yrs and 2 months ago (not that I'm counting of course).

    Totally normal for this to be the last thought at night and first on a morning but glad you're not spoiling your beer any longer crying into it! That rawness eases and getting to know the enemy can make it more bearable. Sounds like you're already well on to doing just that. Here in the UK, I'm afraid they don't routinely furnish us with much more than the 'you've got CLL' information so I've no idea of my prognostics or chromosomal profile.

    Stay strong because this is a long journey to be miserable on.


  • Thanks for the last sentence newdawn, i.e. we in the UK just get plain old cell. All the lines 're 11q 17p made me think I missed something again

  • Hi and welcome to the club! I am 62, Dx at age 48. 11q & 13q deleations. I am on Imbruvica and doing good on it with the exception that I have joint pain ( which I Now take Plaquenil ) and my once straight hair is now curly. But other than that I am doing pretty good. You won't need treatment for years. So take a deep breath and watch and wait. Maybe by the time your numbers go up they will have a cure! Good luck , Anna

  • I'm 11q unmutaded and have been on ibrutinib for 18 months and feeling great. No nodes and all labs in normal range. You've got a great specialist. So grateful to have drugs that control the beast. It will get better : )

  • I too am 17 p del and have been on Imbruvica for 15 months. I am doing well. My blood levels are normal - my specialist said you would not know that I had CLL. There are side effects, and they seem to come and go. Happy to be alive and feel so very lucky . Timing is everything with this disease. When I was diagnosed (27 months ago) Imbruvica was only in trials, and there was really nothing that worked for 17 p . I was on watch and wait for one year when suddenly my levels spiked and I started treatment. The diagnosis is difficult for everyone, but once you move past that and settle into it, I think it gets easier. It is just a part of life. I have always been a "Pollyanna", which helps. Amazing progress is being made with CLL and other blood diseases. We are all going to die, and no one knows when. Since my diagnosis a co- worker's husband died suddenly (under 50), a friend's son died of brain cancer, and my optician died of kidney cancer. Both were diagnosed after I was.

    Good luck with your appointment, try not to worry and remember to enjoy each beautiful day.

  • hi i know when your first diagnosed its very worrying . my husband was diagnosed 17yrs ago and we didnt know what had hit us but once he been for his first consultation with his haematologist who answered all the questions we asked. My husband decided to cut his hours at work (he was an h g v driver ) and for the next 17yrs he had no problems, i should just say he was 54 when diagnosed . Then in December 2015 it was decided that treatment was needed so he started chemo ( F C R ) on the 12th of january for 6 months which he tolerated very well . He will have scans and bone marrow biopsy in september so fingers crossed.what i think im trying to say is that try to stay positive ,you have family support as did we .I think my husband has been lucky, hope you are too.

  • Hi I am 11q deleted and unmutated. Was dx 7 years ago at 47 . I have been on ibrutinib for twenty months and all bloods in normal range. Ibrutinib is my first line treatment. I think I had one of the highest WBC at time of treatment....460. Need anymore info just ask! BW Jacqueline in bonny Scotland

  • Hi flutter he... Sounds like your in the same boat as me. I'm glad to hear the IBR is working its magic... Any side affects ? You had a good few years of W&W did u have the 11q bulky nodes with the high WBC.... Why did you wait till wbc was so high for treatment... Just curious since I'm following your footprints kind of....how the weather in Scotland ? I'd sure love to visit your country and play a little golf.... Ooolala! I was dx in Jan I hope I can get a few years of w&w. Maybe the newer drugs like venaticlexnor acp -196 will be approved by then....my Svc is only 15k now so maybe .....you never know.... Cheers to you!

  • I know the struggle! My daughter is trisomy and its chromosomes that have 3 of something instead of 2. We're told trisomy is intermediate risk.

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