Anyone have CLL q11

[Lorray]

Hello I hope you all continue to take good care of yourselves. I'm on here because my brother was diagnosed a couple of years ago with CLL q11. Is these anyone out there that has this as well and if so how are you doing. Also what treatment plan have you had if you don't mind me asking. I appreciate your help and any information any of you may have. I know this is a more advanced stage so I pray for him every day. Thank you and I wish you all the best. Lorray 💕

[Hidden]

Welcome! I'm in the 11q club and started first treatment, chlorambicle & steriods, 2yrs after diagnosis. Treatment was not very successful but I did get 11 months of reduced symptoms. Last month started 2nd treatment with Ibrutinib with it's typical yet unpredicable sidefx. For shape I'm in I'm in pretty good shape. Everyone's cll is different so keep reading this forum it really helps. Only must do advice is get a cll specialist on you team. It's all they do and that experience is critical when decisions need to be made. You're a good sister-best wishes to u and bro. -bill

[Lorray in reply to Hidden]

Thanks Bill I appreciate your message. Yes he has a good CLL specialist in the Seattle area. He is on a clinical trial right now. I'm trying to get as educated as I can. Thanks again for reaching out and best of luck to you. Take care. Lorray

[Jm954 Administrator]

Hi Lorray, me too.

Grateful to have Ibrutinib and hoping for a good remission as 11q generally responds well.

Any queries or concerns, just ask this group. There is usually someone who has been there and can share their experiences

Sending you best wishes 👍

[Lorray in reply to Jm954]

Hi thanks you so much for reaching out to me. I really appreciate it. I am glad I found this forum. Please take care and I wish you all the best. 💕

[debs24]

Hi Lorray

Another 11q-er here!

Have been taking Ibrutinib for 2.5 months - so far, so very good! I have not (yet!) noticed any of the famous side effects, but perhaps I'm tempting fate now! 🙄 My white cell and lymphocyte counts are steadily reducing (lymphocytes are currently 10) and all other blood counts were normal at my last blood test 2 weeks ago.

I'm feeling more energetic and, according to family, friends and colleagues, am looking healthier, and happier, than I have done for some time. Am working full time and enjoying a busy family and social life. I'm off to Florida with my husband in a few weeks for a lovely holiday (hopefully with plenty of sunshine!😎).

I have great hopes that Ibrutinib will give me a lengthy period of health but, whatever happens, I'm determined to live life to the full...while the going is good!😉

Best wishes to your brother and to you too - stay positive and enjoy life! 🙂

Debs.

[Lorray in reply to debs24]

Hi Deb, great I'm so glad you are doing well and feeling good. Yay!! I hope you have a wonderful time in Florida. I appreciate your message as it was so kind of you to message me back. I wish you all the best and take care of yourself. Lorray 🌷

[Justasheet1 in reply to debs24]

Debs,

I hope you’re not heading to the Florida Keys, they were pummeled by Hurricane Irma.

Jeff

[debs24 in reply to Justasheet1]

Hi Jeff

Oh, I know - we watched the news coverage of Irma's impact closely, from across the Atlantic here in the UK! We really felt for the people in her path, but Floridians seem to be a resilient bunch and appeared to face up to Irma as best they could. Relieved to see there were relatively few human casualties - property can be replaced...people are infinitely more precious! It was sad to see the destruction she caused, though - nature can be horrific and unforgiving as well as being amazing...

We have visited The Keys previously but are not planning to go near there on our latest trip. We'll be further north in Florida, paying a visit to The Home of the Mouse (Walt Disney World) and checking out villas for yet another visit in March next year, this time with family. We're especially looking forward to meeting Mickey Mouse with our 3 year old granddaughter - can't wait to see her face! I know the theme parks won't be everyone's cup of tea, but we have a great time there - and we'll be making yet more precious memories whilst squeezing as much fun as possible out of life!

Thanks for the warning, Jeff - it can be a big, scary world out there - a bit of friendly advice, from those who know, is always appreciated!🙂

Be well.

Debs.

[ltcbbaker in reply to debs24]

Debs, my wife Michele Nadeem-Baker has video blog w PatientPower on facebook live precisely on her mitigation strategies while on ibrutinib clinical trial now closing in on 2-yrs

the Colonel

[debs24 in reply to ltcbbaker]

Hi

Thanks for this - very interesting...and useful! 🙂

Debs.

[pkpayne]

I too am also an 11qer as somebody else referred to it. I was DX in Feb 2016 and will be starting a trial next week. First with Ibrutinib and adding Venetoclax in 3 months. I agree that it’s of immense importance to see a CLL specialist. Best wishes for your brother.

[Lorray in reply to pkpayne]

Thanks so much for your message and support. I really appreciate it. I wish you all the best and please take care of yourself. My brother is 54 and I want to learn as much as I can so that I can help him and be of some support. 💕

[Newdawn Administrator]

Your brother is very lucky to have you Lorray! Well done you for being such a great, supportive sis!

Good luck to him on his trial. I haven’t yet had cytogenetic testing (5 year’s post diagnosis) so am not aware of my biomarkers.

Warm best wishes,

Newdawn

[Lorray in reply to Newdawn]

Hello and thanks for your very kind words. Yes so glad I found this forum to reach out to all of you. He is a wonderful brother and has two kids 11 and 13 so I want to be here for him in any way I can. Thanks again and I wish you all the best. Take care of yourself. Lorray

[DebLeeCox]

Hi Lorray, I'm also 11q CLL I was diagnosed in Jan this year at 39 yrs of age, however I reckon I've had it since 2013 after being diagnosed with the Epstein Barr Virus. Ever since then I've had an enlarged gland in my neck and I respond really badly to mosquito bites. Presently all of my glands are pretty bulky but besides that I feel great with no other symptoms. Still on W&W and see a haemotologist every 3 months. I just wish that if and when I require treatment that FCR would be my only first line treatment option as is the case here in Aus at the moment. It seems in my opinion from reading a lot of others comments that 11q doesn't respond well to FCR. It seems targeted therapies work better? But maybe I'm wrong...I wish your brother a long, healthy and happy watch and wait ! One needs to try not think about it too much, and let it consume you many people live most of their lives never needing treatment. I've heard before that one doesn't necessarily die from CLL but rather with CLL! Stay positive!! This is such an amazing group I would not feel this postive if it wasn't for this group.

[DebLeeCox in reply to DebLeeCox]

Sorry meant to say I wish that FCR was NOT my only option for first line treatment

[Rafe in reply to DebLeeCox]

mosquito bites are not fun. I've never reacted to them as I did this year. Welts that lasted months. Best wishes Deb.

[Lorray in reply to DebLeeCox]

Hi thanks so much for your message and I wish you all the best. Wow that's great you are on watch and wait on q11. My brother had to have chemo treatments when first diagnosed and now he is on a clinical trial. He had a white count of 600,000 off the charts when first diagnosed. Take care of yourself. I wish you all the best. Lorray

[Rafe]

Yes, I was diagnosed in 2014 and started FCR within 60 days due to CLL affecting the plura of my lungs. Rituxan maintenance every other month for about two years followed. Rituxan stopped working in 2016 and I had BR chemo. Last CT showed Lymph nodes are continuing to enlarge, and it looks like ibrutinib will be starting later this year. But still working every day, and still moving forward. Best Wishes for you and your brother.

[Lorray in reply to Rafe]

Hi thanks so much for your message. I appreciate you reaching out to me. I hope you can get your lymph nodes down. I wish you all the best and one day at a time. Take care of yourself. Lorray

[Jomary8505]

Hi Lorray,

I too have 11q. I was diagnosed on my 50th birthday but most likely had it for a few years before that. I had FCR in Nov 2014 and did all 6 rounds. The oral drugs were not available as a first line of treatment. I live in US in Pennsylvania. There are so many changes in the past few years for CLL. Not sure about remission since they did not do a bone marrow biopsy after treatment. It did take over 9 months for my chemo induced neutropenia to resolve. I've done well over the past few years. I can feel some lymph nodes returning and some fatigue but I did not have treatment until the CLL began to affect my platelets and RBC's along with enlarged spleen and lymph nodes. My WBC was always within normal range so I had the SLL presentation. It's overwhelming at first but there are many advances in CLL treatment and some never need treatment!

JoMary

[Lorray in reply to Jomary8505]

JoMary thank you for your reply. I really appreciate your words of encouragement. I'm trying to learn more so I can be here for my brother. I wish you all the best in your journey and please take care of yourself. Lorray 💕

[kc1953]

Unmutated IGVH and del 11q. Very bulky nodes in areas not visible. Diagnosed after life threatening PE. Treatment a month after diagnosis. 6 rounds BR. Complete response/on the cusp of MRD- in bone marrow (exactly .01%). I have been in remission for 21 months. No health issues, no serious illness, no infections. I feel perfectly normal. For me the psychological and emotional issues of the sudden transition from normally to cancer to treatment were the most difficult thing. I tolerated treatment well and continued to work through treatment. But certainly no picnic. Best of luck.

[Lorray in reply to kc1953]

Thank you for your message and yes no picnic for sure. I'm glad you are doing ok and I wish you all the best. Thank you for reaching out to me and telling me part of your journey. You will all be in my thoughts and prayers. Lorray

[Hidden]

11q. 51 yo

[ltcbbaker]

follow my wife on PatientPower site: Michele Nadeem-Baker's Video Blog: Month 5 treatment under clinical trial for CLL 11q del

[Lorray]

Ok I sure will. Thanks so much. Lorray

[ABloor]

I am 11q was diagnosed 18mths ago was 49 but we reckon I had it from 2014. On Watch and Wait and had no treatment yet. Got sick a couple of weeks ago pneumonia, sinus infection and positive for a virus called Human metapneumovirus and it made my lymph nodes on the back of my head swell up and were very painful and raise my liver enzymes. Nodes have now gone down but still tender and I go for my bloods to check if the liver has recovered on Friday. When I do get sick it just goes straight to my chest. I work full time and cycle to work most days to keep fit. I did have a lot of tiredness 18mths ago but I started to take Vit D and B12 which really helped with energy. I was devastated at first but I have come to terms with it now.