Just been told my husband has cLL can anyone give some information

[Mcginlay]

Hi I just new to forum my husband white blood cells were high so was referred to hemaglobian clinic in Glasgow were shocked to b told he has cLL he is 56 years old and works on building site so fit for his age we got chest X-ray next week and appointment in 3 months with clinic he is having pain in his spleen just now and groin not been told how high his white blood cells were he got examination which doctor said all felt ok not been told much else gave a book on cLL to read so confused is this early stages how do we no what stage he is

[Lawand1]

Hi, I wrote directly to your husband some days ago. I’m mid 50s and from Glasgow too! I’ve had this for 13 years and still go to the gym, play golf and have a demanding job so life goes on (after the shock!).

I encouraged him as today’s targeted drugs are fantastic, he can be confident of many years of overwhelmingly a normal life, albeit carefully. If he’d like to talk pls DM me, I’d be happy to!

The initial shock is scary, but it still settle down and in fact life can be even better as it’s cherished even more.

[Mcginlay in reply to Lawand1]

13years that is encouraging I am sure my husband will message you once he has accepted he has it still in bit of shock but glad I found this site for him to go on

[DanBro1 in reply to Lawand1]

Lawand1, I take it that you have completed a treatment plan so time ago and your blood components are normal. I am about midway in my treatment plan and assume I can begin going to the gym when it is concluded.

[Lawand1 in reply to DanBro1]

I’m on Ibrutinib

[Mcginlay in reply to Lawand1]

What is a treatment plan and and what isibrutinib I have just been diagnosed and waiting chest X-ray all I have been told is my white blood cells are high and gave an appointment for clinic in 3months were I can ask what stage I am at

[Lawand1 in reply to Mcginlay]

If you’re not need for three months then there is no emergency! Sounds like you’re early which is great, it could go on for years with no treatment. Normal level of lymphocytes is around 3000. What are yours?

What is the x ray for?

Mate as were both from the same town I’d be happy to talk. Could be easier?

[Mcginlay in reply to Lawand1]

Thought X-ray was standard because I have just been diagnosed mate don’t know my blood count or lymphocytes will ask on my next appointment have you ever had X-ray

[AussieNeil Partner Administrator in reply to Mcginlay]

I wasn't aware of X-rays being a standard part of the assessment when you are diagnosed with CLL, but Table 1 of the iWCLL lists a Chest radiography as always being part of general practice as establishing a baseline: ashpublications.org/blood/a...

iWCLL also notes that a radiological assessment of CLL in clinical trials is best done via a CT-scan, which is actually a series or X-rays taken around your body, so that a 3D internal view of your body can be generated. A CT-scan enables internal node and spleen sizes to be determined, but these are rarely done at diagnosis unless your specialist has some reason to suspect large internal lymph nodes, as may be present if you have the 11q del or Small Lymphocytic Leukaemia (SLL) form of CLL/SLL, but the latter doesn't fit with the high white blood cell count. (In the SLL form of CLL/SLL, lymphocyte and hence white blood cell counts are normal, or nearly so.)

Neil

[Lawand1 in reply to Mcginlay]

Had a MRI. Hope you’re getting used to it mate, don’t worry, it is manageable. Keep us posted and if you want to talk DM me and I’ll give you my phone number

[Mcginlay in reply to Lawand1]

I go for my X-ray tomorrow worried now thought it was a standard thing don’t understand it at all thought I was early stages need ask some questions I think I will make appointment with my own doctor as my next appointment with clinic is September they haven’t even told me what my wbc was just it was high on 3different blood tests two by my doctor one by clinic who told me I had cLL so confused mate

[Lawand1 in reply to Mcginlay]

Don’t worry too much mate, easier said than done I know.

Normal lymphocytes should be around 3000. When I was first treated they were over 300,000 so don’t worry if they tell you it’s less than 100,000.

The treatments are better than ever, the drugs gentler on the body and more effective.

You may not even need treatment for months or years!

Your specialist will know more than your GP. If you want to talk call me. I sent you my number.

[AussieNeil Partner Administrator in reply to Mcginlay]

Correction, the iWCLL (international guidelines for the diagnosis, management and treatment of CLL) does recommend chest radiography as part of the baseline assessment. I've updated my earlier reply accordingly. My apologies for getting that wrong.

Neil

[cajunjeff]

Hello Mcginlay. Cll is a very treatable leukemia. Here is a post I did with some info I wish I had understood better at my diagnosis:

healthunlocked.com/cllsuppo...

[Mcginlay in reply to cajunjeff]

Thank you that was easy to understand better than leaflets from hospital

[lankisterguy Volunteer]

Hi Mcginlay,-

Please see this "Pinned Post" to help you with your shock and panic feelings:

healthunlocked.com/cllsuppo...

-

And please take a deep breath, and try to relax. Most of us took nearly a year to come down off the emotional "ledge" you and your husband are on. CLL won't go away, but as one of our members said a long time ago, we eventually learn to dance with the CLL bear, and not get eaten.

-

Len

[stevesmith1964]

HiI was diagnosed in November at the age of 56. I was picked up on a routine annual blood test, no symptoms. I had a Hb 85 and Platelets of 43 which means I was at stage 4 . Bone marrow showed 100% infiltration and my internal lymph nodes lite up the PET scanner like a Xmas tree. I started treatment immediately and now 34 weeks later my bloods are normal and I continue to be a full time dad to my 1 and 3 Yr old. I carry on life as Normal except I don't socialise with none vaccinated family and friends and don't go to any in door pubs or restaurants etc. I am resigned to not travelling a broad for a few years as even after 2 Jabs and a dose of covid I still have no antibodies , which was no surprise. Advice.... don't Google , be positive and enjoy good red wine.

[very]

My husband was diagnosed in his early fifties, he was an HGV driver and worked until he was 65yrs, and led a normal life. He had treatment in 2016, he was aged 70 and remains in remission.jenny uk

[Fran57]

Welcome. We were in shock too when my husband was diagnosed in 2013…. he still has no symptoms! Try not to worry too much… this is an amazing site, where people are SO knowledgeable and very supportive. I have never used social media etc., but this site has been a lifesaver!You will gradually learn more and more and then relax more.

Stay safe,

Fran 😉

[Jacksc06]

Hi. Welcome to the family. I was diagnosed in 2015, I had four infusions of Rituximab and Bendamustine in 2017. Currently being prescribed Imbruvica. I still work 398 hours per week doing a physical job. It is indeed a shock upon diagnosis, Take a deep breath and try to keep calm. Any questions that you may have ask away, Need support? we are here for you both. Best wishes.

[MovingForward4423]

Age fitness doesn't make any difference. I was diagnosed at 49, fully fit, and active. Pain in the spleen is probably the spleen growing. That is not normally painful but can be uncomfortable and give a pain in the left shoulder. CLL is not normally diagnosed quickly, as the blood needs to be examined un the microscope by specialists. Also, they normally do a bone marrow biopsy to check for infiltration. On a positive note, and based on mutations the outlook now is very good. Your husband is young to will probably tolerate treatment well. I am on Ibrutinib, one tablet a day and after 7 months I have no noticeable side effects. When I started treatment I was plagued by gout, and then joint pains. It does settle after time... Right now my blood is normal, after a WBC of 149 before treatment.

[Mwagner]

When I was diagnosed 4 years ago I found this site to be amazing. My advice is to get as many facts as you can to tamp down the emotions you may have from getting the diagnosis. I found many folks here that were informative, supportive, and caring. You have come to the right place for beginning your journey.

[Loves2walk]

Welcome to this forum Mcginlay! You’ve found the right place for information and support.

My husband was diagnosed 5.5 yrs ago through routine blood work as well. He’s just fine still, fingers crossed always.

The shock of this diagnosis will diminish, I promise you, but the first while is tough, no question about that.

Take deep breaths, take your time here, and slowly you’ll absorb just what CLL is all about.

You can ask any and all questions here, and know someone will answer!

Sending lots of positive thoughts your way!!!

[marcyh]

My doctor didn't even give me a book. I couldn't find a leaflet in the hospital or anywhere - just fundraising. It was a very upsetting time for me and those first moments stay with us. However, my CLL has done very well and it's given me time to educate myself and to live life better.Sincere best wishes,

marcyh

[Bradmx]

Like your husband i found Doctors/nurses not very informative especially about the treatment plan as they only talked in terms of the 1st weeks infusions and not a lot else. . i am guessing he will need a bone marrow biopsy as i did with the result of 80% CLL.i am 60 and started CLL treatment in May in England. One of my first questions was when can i go back to work and the Haematology specialist said at least 6 months. i see the logic in this suggestion in a way because the number of blood tests / reviews / covid tests /treatment days fill my week. The medics are concerned about possible infection or tumourlysis . But my side effects from Obinutzumab/venetoclax are minimal and feel i should return to work .