My story

[NessaLou]

I was told I had CLL at the age of 35 (am now43) while being ivestigated for migraines! Bit of a shock to say the least, particularly when I was told and read that it is a leukaemia usually found in older people and more typically in men. Managed to survive so far without any major deterioration to my health - have a couple of enlarged lymph nodes in my neck and my counts are on the increase - although nothing of interest as my hemotologist says!. I still manage to work full time in a stressful job teaching, and I have managed to stay relatively fit and healthy - have been suffering from cold uticaria for about two years - awful hives when I get cold (even in August!). My hemotologist was unsure whether this had any link to the CLL or whether I am just a sensitive soul. Would love to hear from any of you who are in a similar situation to me

[Rileyesq]

Hi there,

I was diagnosed 4 years ago aged 40, not quite as young but close enough! I am stage A and still watch and wait. My blood counts have increased very slowly over the last 4 years and I have enlarged nodes in my neck, armpits, chest. stomach and groin although nothing of any concern and I still remain healthy. The Mayo Clinic in the US recognises that if you have an underlying health condition. Known as secondary acquired urticaria, this less common type of cold urticaria can be caused by an underlying health problem, such as rheumatoid arthritis, hepatitis or cancer. Although I am sure you are also a sensitive soul!

Keep well!

[NessaLou in reply to Rileyesq]

Thanks Rileyesq - I thought there might be a link but had found nothing to confirm. I no longer feel quite such a weirdo as I wrap up in countless layers ready to face the winter. Bring it on!

[Kwenda in reply to NessaLou]

secondary acquired urticaria

There is a New Zealand link showing that this is known with CLL patients.

dermnetnz.org/reactions/col...

See also

rarediseases.org/rare-disea...

Dick

[Hidden in reply to NessaLou]

you are so not a weirdo Nessa - that is me to a T. you may want to consider getting an application for a handicap parking pass to get you in and out of public places easier. i have one now because my CU is so atrocious. it is a lifesaver for me. now i know what little kids feel like having to get snowsuits on. i have to go full on metaljacket in regards to dressing up to go out in winter *i live in Canada* - it can be exhausting but i have no choice! peace and love to you...

[NessaLou in reply to Hidden]

Merry Christmas to you! I have found much relief from fexofenadine prescribed originally for bad hayfever late spring. I've been taking it religiously ever since and have enjoyed being CU free this winter. Hope you manage to keep snuggly!

[Hidden in reply to NessaLou]

so pleased it works for you. unfortunately that was one of the antihistamines i tried which didn't click for me. my daughter bought me a great fuzzy zippy which is keeping me cozy in the house - yay! Merry christmas to you <3

[sunnycroft]

Hi there,

I was diagnosed at 41, had treatment at the age of 44 (FCR) and have since had 5 years of remission. However, in extreme cold, I too suffer from cold uticaria, but only when the temperature is round about freezing. Doesn't cause too many problems but i love ski-ing so just have to put many layers on.

Hope you continue in watch and wait for many years to come.

Keep warm!!

[Hidden]

Hi all,

I was diagnosed at 43 and am now 46. So far, staying well and trying to keep abreast of all the latest research etc.

Even though it was only 3 years ago that I was diagnosed, there was so little support available to me at that time which left me feeling exceptionally isolated. Thankfully however, the CLL Assosaition and International Forums proved invaluable in helping me come to terms with my diagnosis and I am now thrilled that this site is now up and running.

Wishing you all well and I look forward to reading your posts in the future.

Jo

[NessaLou in reply to Hidden]

Jo

I completely agree. This is the first time I have had the chance to 'talk' to anyone who has CLL since my diagnosis 7 years ago. It is very liberating as everyone understands what you are feeling and have been through and going through. It's also very addictive and I should be planning lessons right now! Better get back to work.

[mairin]

Hi I was diagnosed at 36 years not that dissimiliar to you and I am now 45 years. And yes what a shock it was too being so young! My haemotologist does not see anyone my age most of the people he sees are 60+ so I also felt very isolated until hurray this site came up. I used to use a site in USA and there it was quite an eye opener to see how many younger people were being diagnosed. It was good to read your blog and look forward to reading more. Best wishes Mairin

[Damms]

Hi,

I was dx when I was 37 and went to the doc due to intestine problems. Found out it was due to CLL infiltrations to the bowel. Did not have any night sweats or enlarged lymph nodes.

Went straight to FCR 5 cycles, which send me in a complete remission. But unfortunately it also made the WBC go below 1 for a very long time (almost two years) and left me with practically no immunesystem.

Which is not good with a stressfull fulltime job, and two small children in kindergarden and preschool.

So the last two years has been in and out of hospitals with several long stays

Now for the first time I actually feel like I Can have a life again. The docs put me on neulasta and hizentra (immunoglobine). And this is causing the positive effect on my every Day life.

Unfortunately has the CLL caused me to loose my job and I am not sure that I will be able to keep my new job if the CLL or immunesystem is starting to act up again.

So I really hope it will stay put for the next 10 years or more.