I’m new here…

[GrannyMyers]

My husband (66) newly diagnosed with full blown CLL, otherwise good health. Just started on Imbruvica this week.. just trying to learn everything about the journey we are on. Waiting to get the results of the FISH test done a week ago.

[AussieNeil Administrator]

Welcome to you and your husband. He has started on a game changer medication for CLL, that has been so very successful, Imbruvica has resulted in a total of 3 BTK inhibitors that can be prescribed for CLL in the USA and a further 11 in clinical trials. We keep very useful posts in our Pinned Posts section here: healthunlocked.com/cllsuppo...

Start with this one healthunlocked.com/cllsuppo...

on 'brutinibs' to learn more about this medication and how later versions can be used if Imbruvica isn't well tolerated, etc.

Neil

[Fowey2009]

Welcome! I am the partner of someone with CLL, and I think this is the best forum for finding out and sharing information. The administrators are excellent. Life in CLL research is moving so quickly, there is more hope now even than when my husband was diagnosed just 8 years ago.Beryl

[SofiaDeo]

How/why did he get a CLL diagnosis/start treatment without FISH? Since it takes 3 months of elevated cells with abnormalities for the diagnosis in the US, I am wondering why the FISH wasn't done sooner. I am only familiar with a FISH being done "before" treatment is started. Mine was done within the first month of elevated lymphocyte levels. Or are there other significant labs/findings that warranted immediate treatment? Or when you say "newly diagnosed", he has finished the 3 months of blood abnormalities/other testing & now the diagnosis is "official"? I am just curious.

Welcome to our group, I hope all the excellent "pinned posts" there are available answer a lot of your questions. And if not, please feel free to ask about anything & everything!

[AussieNeil Administrator in reply to SofiaDeo]

Immunophenotype flow cytometry testing is usually definitive for a CLL diagnosis, though sometimes the flow cytometry results can be confused, with close cousins to CLL. FISH testing is used for prognostic testing in the USA, but seldom done in other countries until just before treatment.

[SofiaDeo in reply to AussieNeil]

Thanks! I remember my doc saying "it takes 3 months to get a diagnosis" so am curious about the timeline.

[AussieNeil Administrator in reply to SofiaDeo]

Took me about half that 3 month period in Australia via our public health system. Most of that time was waiting time to see if my worsening neutropenia was due to an infection (giving it time to clear) or to eliminate blood testing errors. Acute leukaemias are diagnosed and treatment commenced much faster.

[Annie1920 in reply to SofiaDeo]

Mine was diagnosed with a blood test only the first time I saw a consultant 14 years ago now..

[Ladylin151 in reply to SofiaDeo]

My husband was diagnosed over night. It only took a couple more tests done within the next few weeks to confirm. His FISH was done as a prelude to treatment which, in the end, was not needed. (2015)

[GrannyMyers]

He never had a reason to see a doctor for years. In September he called a dr. friend and described weak legs, fatigue and enlarged abdomen.. we are a small town and he got him in for lab work and a ct with contrast within 2 days. His white count was over 207,000 and he was also anemic, and high lymphocytes.. his spleen is larger than his liver..we also saw the oncologist within a day after that.

[GrannyMyers in reply to GrannyMyers]

He did have flow cytometry in the earlier lab work. And if you were staging it according to symptoms it would be a stage four I believe is what the doctor said.

[Ladylin151 in reply to GrannyMyers]

Staging with CLL maybe a reference for doctors but is a poor reference in terms of symptoms, how the patient feels or treatment needs. You'll get used to all the "oddities" of this being chronic rather than acute and a blood cancer rather than a "solid" cancer. But we certainly understand this is very overwhelming at first and we empathize! We wish you the best of journeys!

[SofiaDeo in reply to GrannyMyers]

Ahhh, that makes sense now. I agree super high white counts, anemia, fatigue/weakness, enlarged spleen.....all reasons to test urgently & the flow cytometry along with theses signs/symptoms would be reason to treat before the FISH results came back. And the cells likely had the classic CLL staining on the slides. Glad you have a good healthcare system that moved promptly!

And I would like to comment for those who have a lot of anxiety before/between tests....GrannyMyers' husbands' experience is a classic example of "if something might be urgent, docs jump on it. If his symptoms and results weren't a potential urgent problem, he wouldn't be asked to see an oncologist ASAP, or get the testing done ASAP. So those who have a lot of anxiety over something a doc says "hmm, here is something I want to monitor in case it turns out to need attention, let's check back in 3 months"... it really doesn't look like a huge problem to your doc. Otherwise you would be urged to be seen much much faster.

[Jacksc06]

HI. Welcome to the family. Pleased to hear that he is on Ibrutinib, It has improved so many peoples life for the better. Best wishes.

[joanne17 in reply to Jacksc06]

I was fortunate and went on Ibrutinib as soon as I was diagnosed with CLL. It took a bit of adjusting but I'm happy to say I'm in 6 years and feeling great. You've come to the right group as there is always someone or something new to share.

[Someca]

Hi. Can you explain you mean by “full blown” ?

[Annie1920 in reply to Someca]

I wanted to ask that too😊 I thought CLL was a bit like pregnancy.. You either are or aren't 🤔

[morepork in reply to Annie1920]

Full-blown? I imagine his enlarged abdomen and spleen might have felt a bit like being pregnant? 😊 Good to hear he's on Ibrutinib and on the list.

[GrannyMyers in reply to Annie1920]

Well like I said new to this- first appt was Sept 20. Guess I just meant yes you definitely have a lot going on with everything blood levels,big sleep and liver ,etc. and yes I did tell him maybe he had an inkling of what pregnancy felt like. 😏

[GrannyMyers in reply to GrannyMyers]

Spleen not sleep. Need glasses on.

[Astro617 in reply to GrannyMyers]

May your husband tolerate the medication well and feel better soon.

[BayfieldAnnette]

Welcome you and your husband to the group. My husband's 64 and he was diagnosed with CLL in November 2016 was on watch and wait for 9 months,and because he lost so much weight was put on ibruvinib, and been in remission just over 3 year's, and still on ibruvinib has chemo check up every 3 months,and speak's to his oncologist every 6 months.

[Ibru]

This is an excellent forum. Another place to learn a lot is CLLSociety.org My husband has been on Imbruvica 7.5 years and doing great.

[DawnRedwood]

All the very best to you and your husband!!! I've said this many times, but I started on Imbruvica over 5 years ago and have not had any side effects even when starting treatment, and within 3 months my white blood count went from 650,000 (when I was hospitalized ) to NORMAL. My oncologist was amazed but was very happy about it as was I. I hope your husband has the same success as I have.