Anyone diagnosed in their 30's?

[SonnyJim]

Hi All,

I was diagnosed with CLL in February 2015. I'm 33 years old. The doctor told me I'm the youngest person he has ever diagnosed and that this is very unusual for my age. I was wondering if there is anyone else out there?

All the best,

Stephan

[rlyndecker]

I was 38 but according to my oncologist I should have been diagnosed much earlier. I think he decided based on everything (I had all my records since 1992) that I shoukd have been diagnosed as early as 2006.

I had frequent sinus infections so every time I had bloodwork done and my WBC was sky high I was told (as in silly girl) it's just because you have a sinus infection.

I'm very surprised they finally did something about it 2+ years ago. I had a grandfather who died of Leukemia but at the time I didn't know it was CLL, I now know it was CLL. But I have a family history of other cancers and they still never did anything....oh well.

Sorry to hear about this- hopefully you won't need treatment for a very long time!

[SonnyJim in reply to rlyndecker]

Thank you for the reply.

[Firefly14]

Hi Stephan!

Sorry to hear your recent news which no doubt has come as a shock. I am 38 and was diagnosed last November, aged 37. I hope like me you are in the very early stages? I've been told that I may not need treatment for many years and that by then, the treatments (or maybe cure?!) will be so much more advanced.. Things are changing by the month it seems at the moment. So whilst we are unlucky to be diagnosed young, hopefully science will be on our side.

I think being a younger person with CLL means (hopefully!) that we have some energy and time to change things if we can, for example I've changed my diet and exercise a lot more now.. But it also brings its own unique set of challenges, eg work, family and in my case having to explain to kids' schools and tell my parents which was undoubtedly the hardest part. I also find that, having told some close friends, it is very difficult for them to understand why I'm not being treated and they assume I need a second opinion. I've found explaining myself to people to be one of the things I didn't see coming, and find it quite draining!

However a few months in, the shock is starting to subside, and I hope that you are alright and getting support. This community is amazing I've found! It's great to have contact with people who really understand.

Stay in touch!

Anne-Marie (Firefly)

[SonnyJim in reply to Firefly14]

Hi Anne-Marie,

Thanks for your reply. I'm practically stage 0 and have been told the same as you and that we hopefully do have the time of science to make some major break-throughs on our side.

Family and close friends do freak out about this and the questions why there is no treatment is neverending. I'm actually on my way to France this afternoon because my dad (over there) wants to have a FISH test done on my blood (something the NHS didn't do)

I've sort-of digested the information by now and emotionally feeling a bit better about it.

Keep well,

Stephan

[Ernest2 in reply to SonnyJim]

Hi Stephen,

Really sorry to hear you probably have CLL. I am surprised you could not get a FISH test, but perhaps they have done other tests better/equivalent. If you are unhappy, when you get back from France you might want to consider trying a different hospital or health authority (I'm assuming you are ok with a bit of travel). Teaching hospitals that also do research can probably offer a wider range of tests, and genetic tests (with more info and more reliability) will I think become available over the next year or two. Also at stage approx zero you hopefully have time on your side so don't need to rush into things and making choices. You do want a sound initial diagnosis though, so best of luck in France.

All hard to get your hear round. If you care to say roughly where you live folks can probably recommend good places to go in the UK. The other point if you have no objections, teaching hospitals may ask if you care to optionally donate a few extra small samples of blood to help with their research (I hadn't realized that until I went to the "big hospital")

Please let us know how you get on in France, and what you can make of their diagnosis, treatment options, and health system (Thankfully you don't look like you need any treatment yet at approx stage zero, but interesting to ask).

P.S. I was mid 40's at diagnosis, I am a familial case though (my father also had CLL in his 60's in the 1980's.). In that scenario you tend to get CLL at a younger age. (I guess you have read that median age for diagnosis is early 70's).

P.P.S. Have a look at Paula's recent post (also links at the end to parts 2 and 3). Don't try to take it all in at first read, give yourself time:

healthunlocked.com/cllsuppo...

Best wishes,

Ernest.

[TheFrog]

I was diagnosed with SSL when I was 39 but I was stage 4 and needed treatment within 6 months. I'm glad to say I'm now 60 and in good health.

[zentangle in reply to TheFrog]

Oh my God, I smiled at that.

Thanks,

Steve

[DebinOzinLondon]

Hi Stephan, sorry you've joined us but there are quite a few of us young 'uns on this forum. I was diagnosed at 38 but had probably had it a few years prior. I had FCR at 39 and have now relapsed at 41 so am looking at clinical trials. I hope you fall into the category of those who don't need treatment for years, if ever, but regardless there are many reasons to be optimistic and I believe a cure is just around the corner.

Best wishes

Deborah

[Amymax in reply to DebinOzinLondon]

Hi Deborah, my husband was diagnosed at age 28 stage 3. Treatment started right away and he has been in remission for 3 years. Doctor says it will return with in the next 2 years. Wondered what steps you took once it relapsed?

[AAli]

Hi Stephan

Welcome with best wishes.

I am 37 now and got this news 2 months back. Now when i searching around I came to know that there are so many young people suffering with CLL. Don't go panic and you have a long way to go. Read and make your research but my experience no need to consult too many doctors as it will make you confused.

If you may share your reports here it will be good as here you will find many experienced friends and they will guide you well.

Best regards

[fieldmeadow]

Just a quick note to say that I had a FISH test done on the NHS. I requested one but may depend on where you live and whether or not you ask for one.

[Cllcanada Top Poster CURE Hero]

Early stage FISH panels can be unreliable, there simply may not be enough cancer B cells... the trend now, certainly outside the U.S..... is to do FISH panels prior to treatment, since the primary value clinically is to separate 17p and TP53 mutated out for special treatment...

Also, new research indicates FISH results can change over time, additional markers may appear... so later test, give a better picture of prognostic markers

~chris

[Hidden in reply to Cllcanada]

My Consultant said the same as Chris.

[Rileyesq]

Not quite as young but was diagnosed at 40, nearly 7 years ago and have been on watch and wait since. Are you based in the UK?

[Chairo]

I was 32 when diagnosed, and after 30 months watch and wait it's now time for treatment. I am in the FLAIR trial and will start on Nov 18th. Don't be afraid Stephan, make the most of your life every single day and live with no regrets. On the other hand don't think you have only a few years spare because this might be a very dangerous thinking. This is a chronic disease we will have to live with for the rest of our life, so just focus on being happy and make your life the way you want it.

[SonnyJim]

I wish you all the best with this treatment. I take it you are in the UK after looking up this trial? I'm in London. I'm still in watch & wait after 8 months of being diagnosed. So far it's not affecting my life at all.

[Chairo in reply to SonnyJim]

Exactly, I am in London too. Well I had basically no symptoms for nearly 2 years and kept on with my normal life until bone marrow infiltration, 500 WBC and a spleen nearly the size of a lung have sparkled off the need for the treatment, along with symptoms. If you are not progressing quickly, you might have years before treatment or not needing treatment at all.

[hanskloss]

I got diagnosed at 42 I think. Kind of weird to hear and read that median age for CLL is in the sixties when you see first hand how many younger people get it these days.

Wish you all the best in your w&w or treatment.

[Hidden]

Hi Stephan. I hope you are doing well. I joined the group recently and your post got my attention. My boyfriend is 33 and he just got diagnosed with CLL last month. The disease was progressing really quickly , the WBC were increasing and his spleen was growing , so he started chemo immediately. We just finished the first dose a week ago, the cells were dropping but they've started rising again.

Its a difficult time, since we were not prepared and don't have the best medical care in our country.

We are remaining positive and trying to get as much information about the disease.

I would be very interested in hearing about your experience .

Regards,

Jay

[SonnyJim in reply to Hidden]

Hi Jay,

I'm sorry to hear that it's progressing so fast. So far I've been lucky, my lymphocyte count has "only" doubled in the past 12 months, which is not such a bad sign, if it doubled in the time of 6 months then I would need treatment. My lymph nodes are small with the biggest ones being 0.9mm (2cm is considered the dangerous size) and spleen is still normal size luckily. So it seems I might still have a few years before treatment. I wish you and your boyfriend all the best.

[Ausrine]

I was diagnosed when I was 18 (stage 3)

I'm 21 today, being prepared for a bone marrow transplant, because my CLL became aggressive .

[SonnyJim in reply to Ausrine]

Ok, you are definitely the youngest person I've come across with CLL and it is more typical in males and from your pic I gather you are a girl, so this is the most unusual case. Do you have a suitable bone marrow donor?

[Ausrine in reply to SonnyJim]

Yes doctors told me they have never seen this before...

My sister wasn't a match , they found a donor, but I don't know anything about him . My aim is to achieve remission for now

[SonnyJim in reply to Ausrine]

I wish you all the best and that you will stay in remission forever Ausrine, how soon is the bone marrow transplant?

[Ausrine in reply to SonnyJim]

Thank you, it's not scheduled yet

Good luck

[CCLandwell in reply to Ausrine]

live every day with a smile. I have smiled more in the past six months than any time in my life prior. Never enjoyed the smells of the outdoors or the sunset or rise more. Just live and love like there is no tomorrow because life is a precious gift.

This past Holiday Season was my best and tomorrow will even be better than today. I was stressed for about 2 weeks after I found out about my CLL, I felt like I was kicked in the stomach every morning then I realized I'm still here and I am going to control the one thing I can, my attitude. Now I'm so dam happy for everyday, it's like I won the lottery every day.

The material things have zero value, life is priceless.

[Mario_uk]

Hi Stephan,

I was diagnosed in Nov, at 38, in w&w for the moment, my alc is only 3, though my lymph nodes are growing, so it seems like very different version from yours. Will be around, best of luck (by the way, i'm in London as well).

Mario

[Davdow]

Hello Stephan. Well I have quite a long story to tell. But I will do my best to shorten it. I was Dx'd age 39 - similar to rlyndecker below, I believe that it is probable that I had CLL for a long time before Dx. If you are currently in a similar situation then I think you can take great encouragement from my story, but it has not been an easy path all the way.

I did not require treatment for 5 years. But then it became quite aggressive. I was put on Fludarabine for one year, but my wbc continued to rise. My brother came across from the US to see if he offered a match for a bmt. But unfortunately he was not a match. So we explored the possibility of an (amt) autologous bone marrow transplant (i.e. use purged own cells for the transplant rather than a donor). I was not able to get a harvest to enable a transplant and things were beginning to look grim, with my wbc beginning to rise and more symptoms presenting themselves.

As part of the preparation for the amt, they attempt to get a harvest of your own cells by purging them ofthe CLL cells and the treatment is quite aggressive. So aggressive that I felt quite sick and was also prone to infections. Eventually I was hospitalised for a serious skin infection. Though I had my occasional doubts whether I would pull through, I remained positive on the whole. I was given iv antibiotics and fortunately this controlled my fever and eventually I was allowed home. Around (?2) weeks later I went for a check up and my blood counts had shown a really great improvement. A bit later, as an unexpected result of the aggressive treatment, I got a complete remission. This was such luck, since the treatment regime would have been different (and probably less aggressive) had the decision to try for an amt not been taken. So whilst I did not get amt, I got a totally brilliant '2nd prize' through serendipity.

This was around 2003. My remission lasted for around 11 years.

I began to believe I was almost cured. But alas in 2014 my wbc counts began to rise again. So no longer in remission, it was another shock (but not as bad as the initial Dx of course). But whilst my wbc is now at a high level, and I am slightly anaemic, on the whole I feel great. And my counts have stabilised over the last year or so, and so I do not need treatment - long may it continue.

I agree that when younger there are some positives - I promised myself that if I survived the infection I would take up running - and I never looked back. I have done 15 Great North Runs in a row (Half Marathon), starting in 2003 and raised a lot for a 'well known blood cancer charity'.

I will be 60 later this week, but I do not feel old (excepting occasional bad days that I suppose we all have - there a lot of people with colds at work and I feel a bit drained, but going for a run tonight usually gives my energy back!)

So my advice to anyone recently Dx'd in their 30s is the following: (and I know there is similar advice already out there - but I do this in the hope it helps you)

1) Stay positive - you can beat this thing.

2) Watch your diet, yes, but do not give up the occasional treats- after all, you must continue to enjoy life!! And being miserable is far less desirable than the occasional fish and chips!

3) (And in my view this is the most important of all) Take up some form aerobic exercise - whatever suits you- running, swimming, cycling (I am biased in favour of running as it offers the best way of getting fit quickly - as long as you are careful not to over do it and then you can end up getting injured - but I built up very slowly, starting with just 5 mins a day)

4) Always take advice from a specialist. If not happy, get a 2nd opinion

5) Do what makes you happy and try not to worry - bland advice which I should follow myself more often

6) I cannot remember what this one is, but you get the picture

[deters]

My son was diagnosed June of 2017 at 27 yrs old , they said he probably had it for 3 years prior, due to how sick he had been for 3,yrs before diagnosis and no one doing a complete blood work up. We are from the USA.

[deters in reply to deters]

He was stage 4 and needed immediate intensive care, his wbc was over 600,00 and his red blood cell count was 3 when admitted. They asked how he was even walking around, he had to have 4 blood transfusions ,

[Landfish]

Yes. I’m 29, 30 in October 2018. I’m beginning my journey just started an ancient Chinese traditional approach since the western doctors started telling me I needed major surgical removal of kidneys. Turns out it’s not my physical structure but my blood levels and white/red cells that are needing to be healed.

[MsLockYourPosts Passed Volunteer in reply to Landfish]

Landfish You don't say what your diagnosis is. Removal of the kidneys would be extremely unusual for CLL / SLL.

[Karleew]

Hey! I was 25 when I was diagnosed. Like another person said I should have been diagnosed much earlier (oncologist believes I would have been in my teens). I finally had an allogenic stem cell transplant which hopefully stops it! Im hoping that one of the cancer institutions is keeping track of statistics, including age ranges of diagnosis in cancers that have previously been classified as geriatric. Best wishes!

[Terina92 in reply to Karleew]

Karleew, I don't really use this forum or know how to work it haha but can you private message? If so would you mind messaging me, I'm 26 and been referred to the hematologist because of my count