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CLL Support Association
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36 years old with CLL - Show must go on!

Hi Guys,

I am writing from Hungary. I am 36 and have diagnosed CLL two weeks ago after a general work aptitude health test. At this moment I just have FLOW result only. My doctor said that we have to wait the result of cytogenetic tests. Fortunately I have no other sympthomes without wrong blood test. Everybody try to calm me down that try to see the positive side of this shit..CLL is manageable and the traetments are very efficients...

Do you have any advice or other recommendation for me? How should I handle this fact?

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My niece is 24 and was diagnosed with sll few months ago.....sll is similar to cll....

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:-( and how did she handle it? Because I am distroyed when the doctor said me what I have...

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Hello tomster

It’s very shocking when your told you have cancer. I was and am still in shock when I was told last March. It was found by tests for a totally unrelated issue. I’m 47 and have SLL, I have been able to get back to living after about 6 months of researching about my SLL. This site will give you a lot of support from people that are on the same road your on and have gotten to the point of how to cope.

It’s important to know that if you needed treatment there are several novel agents to kick your CLL into remission. It’s also important to note that 1/3 will need treatment at diagnosis 1/3 will need treatment years to decades from diagnosis and 1/3 will never need treatment.

CLL/SLL is generally a very indolent cancer , as my Oncologist said it’s a very lazy cancer and told me to go live my life as this is a chronic condition , treated like high blood pressure or Diabetes if treatment is needed.

Best wishes John

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Thanks for your support and answers. Well, I just get used to this shit, but I know from the first second when I have heard the diagnosis - I have no choice - just go forward! Right now I am waiting the result of FISH and after I will live on! Fortunately I have good doctor (everybody says the best in Hungary), loving family and a strong, brave and loving girlfriend who supports and helps me in every seconds :-) She found this platform, and told me to chat...I was a good advice. It is unbelivable that how many people fight with this problem, and how many people want to help for strangers to fight with their fears. I will collect my questions and I will ask here. Thanks again and I wish you good health!👍

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Your welcome... again as you’ll see the members on this site are very knowledgeable and will provide you with a wealth of knowledge. When I first posted I immediately knew I found a new family of of great positive people.

Since I first posted I haven’t gone a day without checking in or just to read what’s going on. And if I can be of any help talking to you in the future don’t hesitate to PM me.

Best wishes John.

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She is living normally as if she had nothing ..... she went through 6 doses of chemoimminotherapy ......and fine now

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Amazing! Good to hear this kind of stories. Your support is very calming and I am appreciating for every comments and advices concerning CLL. But, may I have another question? How did she fight with her fears and doubts?

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Hi Tomster,

I was dx last month with CLL stage 0, and can relate to what you are going through. I came across this support group and reached out to them. This is an amazing group of individuals with tons of knowledge on CLL and everyone here is supportive.

Best Wishes,

Happy Feet

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Hi Happy,

Yes, it sucks but we have to go forward! We have lot of support and help from our family and friends. Furthermore these guys here are amazing and unbelivable. Kindness, helpfulness, I have never think this...

Right now I have just 2 flow result and nothing else. It is wired. The docs just wrote down the possibility of CLL...

Do you have any other sympthoms or just have wrong blood results? Did you already share this news with your family? Or some else without these group?

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Till now she hasn t shown any fear or worry ..... even laughing when telling others that she got that ..... I honestly don t know if she does that to hide her fear ..... or if she is in denial ..... but me I was devastated ..... I cried for so many days as she is a daughter to me ...... I wish you take that lightly....most of people live a normal life

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Tomster, welcome and I'm sorry you've had this tsunami hit you at your age. I hope that this community will give you support, information, answer any questions and provide a safe place to let your inner feelings vent.

Below, I have copied the response from @Newdawn and then another from myself because I don't think I can better the senitment and information given in them.

Here is Newdawn's reply to another young CLL person, recently diagnosed

"a warm welcome to you at a time of real crisis in your life. Gracious, you’ve only been diagnosed just over a month. I think I was still pacing the floor feeling like a rat was gnawing at my insides at that time! Of course you feel as you do and it’s entirely natural, human and in some ways necessary. It’s the first part of a journey that will lead you to a greater sense of control and reduction in fear. Your world will steady but I can’t promise you it will be exactly the same as before. Describing it as a new reality sounds like a cliche but it really is and how you adapt to it is key to all this.

In May this year I will have been diagnosed 7 yrs. I was 54 at dx and starting a new career opportunity with a family and dependents. Apart from my husband who has been my rock, I choose not to disclose my CLL and it was the best decision I made. It wasn’t always easy and little by little I told people who I needed to support me and those who wouldn’t over-react. If we are lucky this can be a long drawn out affair and people often just don’t get it. CLL is different! They hear cancer and expect certain things to happen. When those things don’t happen, it can pile pressure on us so my advice is tell the people you trust most and take the time to find your own level. Learn as much as you can and get the very best medical support. Oncologists are specialists in solid tumours so find a blood cancer specialist especially someone with a track record in CLL. As time passes, you’ll realise why that matters.

You’ll have no idea at the moment what ‘flavour’ of CLL you have and only time and monitoring on W&W will reveal that. If you’re in the USA you’ll probably receive early testing called a FISH test. It will reveal your unique chromosomal profile which can be indicative of what’s called the ‘risk bucket’. This is not written in stone however and clonal evolution can change those markers over time and treatment can too. CLL is complex and not just about the predictability of certain markers.

The one certainty in CLL at the moment is the reality that new non chemo treatments and research treatments in the pipeline are changing the face of our condition and longevity. Don’t fear treatment if you need it and at 48, it’s pretty statistically likely that you’ll require treatment at some point unless you have CLL that is totally indolent.

My haematologist told me at 54 that I would require treatment at some point due to my age even though for the first 5 years, my CLL was slow but progressive. It was described as indolent. I’ve just signed up for the Flair trial here and am anticipating treatment in about 6/8 weeks. I think knowing this point would come has made me psychologically prepared for treatment. In truth, many of the third of CLL’ers who never require treatment are very much older and the average age for a diagnosis is 71. Not surprising then that so many live out their lives with CLL without requiring treatment.

The advantage of your relative youth (in CLL terms) is you’ll see the new treatments coming to fruition. You’re at an incredibly low stage presently, you’re well and this could indeed go on for years.

At first you’ll attribute every ache, pain and bump to CLL. Your own body will feel changed and scary but it really doesn’t need to. You’re exactly the same person with some dodgy blood cells that are useless but keep producing other useless recruits.

Work through your fears, share them with your loved ones when you feel confident and more informed but importantly, don’t stop living because of fear. It’s not necessary and you need to seize the power back! Never feel afraid to say you need help however. This is emotionally tough and I still feel it.

Best wishes and feel free to ask questions, share or vent anytime you want.

Newdawn

*

and my response:

I wish I could wave a magic wand and take this anxiety and pain away for you. It will improve but it will take time. Meanwhile, we are here for you and aim to offer information, support and a refuge when you can't talk to anyone else.

Whatever you want to ask or discuss there are knowledgeable and caring people here that can help you 24/7.

Here are a few pinned posts that might be helpful right now. The first is about Living Well with CLL and a few things you should do asap such as get your immunisations sorted out. Here it is: healthunlocked.com/cllsuppo... The second is about our on line community: healthunlocked.com/cllsuppo...

If you ever need treatment then there are so many new and effective ones that we are all very optimistic about.

Sending very best wishes

Jackie

Take care,

Jackie

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Thanx Jm954. Good to see that how you support a stranger! Respect and big big thank you. You know, I told myself and my family that keep going! I will fight and I will do everything to change my life. I am just standing at the begining, and I will never give up! I will use your kindness if I will have any question in the future. Thank u!

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Hi Tomster!!

I have been here posting for almost a year. I come here to calm my nerves a lot. You have found a wonderful group of people that will be here for you when you need it. My doc told me to go live life and not think about this CLL. Easier said then done most days. I have not gone without thinking about CLL and the what ifs. But I do know I am good hands and I have faith in God that things will be just fine. Just like high blood pressure or diabetes it needs to be monitored and watched-so CLL is the same. We are young!! We got this

Nice to meet you!! What does your labs look like?

Jackie

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Hi Tomster welcone from Canada 🇨🇦

There is some excellent research work being done in CLL in Budapest... and there is a good support group for blood cancers there.. MOHA

lymphomacoalition.org/moha-...

One recent study found..

These results from this analyses show a significant increase of survival in Hungary over the last 15 years. The availability of treatment options have contributed to this increased survival probability. This population, real-world data confirms the relevance of age at first diagnosis as predictor for overall survival. Recently approved therapies in CLL, e.g. Ibrutinib are expected to further improve the mortality outcome for this patient group.

bloodjournal.org/content/12...

huon.hu/2016/60/2/0127/0127...

The future is bright... live well, your younger age is a positive... a bone marrow transplantation, may offer you a cure for CLL.

~chris 🇨🇦

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Thank you Chis. I will read them and will revert upon the end.

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Hi Jackie, thanks for your kind words. Well at this moment I have 2 flow reszlt with B-type of lymphocities 41%, 17,5 WBC and nothing else. We are still waiting the FISH. Right now I have to change my mind and life. I was very negative and nervous usually. From this moment just positively and go ahead ;-)

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You have come to the right place for support. As you can see, there is a wealth of knowledge on this site. As I learned more about CLL, things did get easier. I wish you the best.

Diana

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Welcome, Tomster!

I was very ill when finally diagnosed and needed treatment right away. I think I basically dealt with things using denial when in treatment. It was all just very surreal. That was 17 years ago and I’m still here and doing well!

One piece of advice you will see often is to think about who to tell and when. Once the word is out you can’t take it back. I told my immediate family, but didn’t include work or others until a way down the line. I think that I needed to process things myself before talking to others.

Keep us posted about your test results and start collecting copies of all labs and other information. You won’t understand a lot of it at first, but that’s OK. You have time. It’s patterns over time that matter most. People here can also help you understand your results.

A good resource is cllsociety.org Start with the section called The Basics. Don’t get wrapped up in the research, etc. until you know more about your CLL.

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Hi,

Thanks for your support. At this moment I have only flow and genaral blood test. WBC 17,5 lymph 41%. I just try to realize the situation and try to find thos channels where I can find enough information about CLL. I will share my results when I will have. Thnx again everything guys🤗

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