Just diagnosed.

[Satsuma12]

Hello everyone.

I have been reading posts from last couple of weeks and have now decided to introduce myself.

I was diagnosed on 13th April with stage A CLL.

I am still in shock.

I am 58 and went to my GP in March thinking I had gallstones.

She ran some tests and then called me on March 20th to tell me my WBC was raised. I presumed I had infection, but she said my CRP was normal and it was probable CLL and she would be referring me to a Haematologist.

I must admit the bottom fell out of my world at that point.

And I am still trying to get my head round it. For the next 7 days I underwent CT scan , colonoscopy, and was then diagnosed with Stage A CLL. Watch and wait.

I have just seen Haematologist again as I noticed lymph node in neck. My lymphocytes are now 49. They were 37 in March.

Haematologist has also told me I have Trisomy 12.

I am continuing to work as a midwife part-time, and trying to be positive about the whole thing.

My biggest concern is the treatment side of things, as my Consultant thinks I will need treatment in next couple of years .

Would be grateful for any advice from this wonderful group?

[Hoffy]

Welcome to the club you did not want to avoid.

Even though it may seem your doctor knows what he's doing it is very important to find a CLL specialist.

Become very educated. 30 % of people never need treatment.

My local hematologist want to give me chemo therapy when I did not even need treatment and chemo for me would have been really bad.

There are a lot of new targeted treatments that old hematologist may not be up on or may not want to do it because they make money from traditional chemo therapy. Unfortunately that happened to me - fortunately I told him no!!! ( it's sad but true) . Or they are in denial .

CLL society web site is very helpful.

Fortunately nothing has to be done too quickly.

[Hoffy]

I meant to say the club you did not want to join. Auto correct typo.

[Newdawn Administrator]

Hi Satsuma and sorry to hear of your diagnosis. We all totally understand how you feel because the initial shock and disbelief can be overwhelming. You may have been doing your own research into Trisomy 12 but I thought you might find this previous post helpful because it contains a lot of explanatory links and advice.

healthunlocked.com/cllsuppo...

I'm wondering if your haematologist mentioned your IGVH mutational status because it can be a reasonable indicator of time to treatment as Neil says in one of his posts;

'There are two big dividers into groups likely to need treatment fairly soon and much later if ever and they are CD38 status and IGVH mutated/unmutated.'

His further post explains the meaning of this.

I'm wondering from your ALC levels whether you've had undiagnosed CLL for a little while. It could be that you fall into the 'intermediate group' which is slightly quicker to treatment as your specialist suspects but there's a number of members on here with Trisomy 12 who have done exceptionally well on FCR if that's the proposed treatment. Our options in the UK are not as wide as our American friends in terms of Ibrutinib for first line treatment except in certain situations like a 17p/TP53 deletion etc. Obviously the timing and type of treatment will be subject to ongoing W&W surveillance but it's certainly important to have a haematologist with specialised knowledge of CLL. It certainly wouldn't harm to have a second opinion though I'm not sure whether you're already in a CLL centre of excellence. Your haematologist does seem to be advising in realistic terms however and you'll see from posts that many CLL'ers with your genetic markers were given unrealistic expectations regarding time to treatment calculations.

It's early days yet and the important thing is that you're keeping well and continuing to work as a midwife which is a very challenging profession. Emotionally it's hard and you must wonder what has hit you from nowhere!

Others will be along with greater technical knowledge of the significance of your biomarkers but I hope this information helps a little.

A warm welcome to you and know that you're amongst a group of fellow CLL'ers who absolutely get how you're feeling.

Warm best wishes,

Newdawn

[Satsuma12 in reply to Newdawn]

Thank you all for your advice

[UK-Sparky]

Hello Satsuma12. good advice already given so just a hug welcome and a smile from me

UK Marc

[Fwankie]

Get stuck into vitamins B+++ 3 and 12 and D3 also vit c

[Peggy4]

Hi Satsuma. Your feelings are completely natural and most of us on this site will remember that time well. Initially it filled my every waking moment.

Please try not to panic (hard I know). There will be many along with much better advice than I can give on your particular 'brand' of CLL.

Read (only up to date stuff), ask (no question to silly) learn as much as you can. I read Prof Fegan's 'Welcome to the family' on the CLL website-so much more reassuring thsn the horrid 'fact' sheet that the surgery provided.

Lastly, take the support offered here. It's worked for me.

Peggy

[Jacksc06]

Hi welcome to the family. You may wish to read my account of my treatment. It is a warts & all account of my experience. Hope it is of help.

[MsDJ]

welcome and sorry for the reason but this is a great group with many resources. My best advice is be your own best advocate and learn learn learn (from reliable sources). Do not ever be embarrassed to ask questions, no questions are stupid on this journey, your knowledge is your power. It will take some time to sink in for sure, allow yourself the time you need. Hugs

[intermark]

Dear SATSUMA 12

Not much to add to the excellent advice received, above, and to wish you some more of my own. Also I want to add my experience when I was diagnosed going on 5 years, when I was 75.

Now almost 80, the diagnosis my hematologist gave me actually congratulating me that I hit a jackpot by getting the type of disease I got (CLL) and not any of the many other types of blood cancer that are treated at the large teaching hospital that I attend, and that I would probably leave the "scene" caused by some other reason whenever my time is up. So, in the meantime I try to live my life as it comes, and use up my time in whatever way I derive the most pleasure.

So, I thank G-d for the blessing and try to learn as much as possible about CLLs details.

I certainly wish you well

Intermark

[MilliePerth]

My husband was diagnosed with Trisonomy 12, twelve months ago at just 51. Quite a shock - the Dr thought he had a cold. He had to have treatment straight away and it has been quite a ride. He has not been able to work since. Learn as much as you can about your disease - then you have a better chance of asking the best questions. Every person is different but it is so good to have this forum for sharing information and keeping abreast of what is happening - so much is happening - which is really encouraging. Embrace those who offer to you support - in any way they can. It's hard to do at first but it really helps. All the best.