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[mnellis63]

Hi I'm Mark and im new here. I was just recently diagnosed with CLL and I'm still trying to process the whole thing in my head. One day life is great and the next every thing changes. I'm 60 years old and I thought in good health the whole thing just seems so surreal.

[ap64]

Welcome Mark. It is very surreal in the beginning and you can have a myriad of the emotions. Try and read following the links on this site for good factual info and ask questions and those who are better informed on this site will answer or direct u back to you doctor as appropriate. Take your time getting used to this new you and ask for our help sympathy listening/Reading ears and eyes. We understand and very many of us have felt what u are feeling. I guarantee with time you will find your centre and get on with life with what I call my new teammate CLL. It is called chronic for a reason. it is not acute and it can be well managed. Check to let us know how u r making out. After over a year with CLL life is good.😀

[mnellis63 in reply to ap64]

Thanks for the encouraging words and all the info you sent

[Foggymind]

Hi Mark,

Sorry to hear you have been diagnosed with CLL but a heartfelt welcome to our forum. All the folk here will understand how you feel at the moment, there are so many emotions and questions. As ap64 has said CLL is a chronic version of leukaemia and it can be well managed. You haven’t specified what stage you were diagnosed at or if other signs of CLL are present (Swollen lymph nodes etc.) You can ask your oncologist or haematologist these questions to get a better picture of how your CLL may affect you if at all. CLL can be so variable across the folk who have it. Some folk have it for years in the watch and wait phase and never suffer with any ill effects. Please try not to worry too much and do not hesitate to ask more questions on this forum, that’s why we are here. In the meantime you might like to read some posts that been written especially for newly diagnosed folk like yourself. The posts consist of lists of things we can do to help ourselves deal with our CLL. The contents of these posts are pooled from a wealth of knowledge shared by the folk here and are easy to understand and digest. They can be found by clicking on the following links below:

Coping Strategies - Part 1 Improving our CLL journey

healthunlocked.com/cllsuppo...

Coping Strategies - Part 2 Living with CLL

healthunlocked.com/cllsuppo...

Coping Strategies - Part 3 Keeping our spirits up

healthunlocked.com/cllsuppo...

Take care and good luck for the future.

Kevin - Essex, UK

[mnellis63 in reply to Foggymind]

Thank you i am in stage 0 watch and wait and i feel fine except for sinus pressure that is there sometimes and then not lookig forward to reading these posts

[Hidden]

Welcome Mark-

This virtual clubhouse has become my strongest ally in learning to live with CLL and move on from the initial shock and disappointment that I have leukemia.

I wish you a calm and peaceful acceptance.

Welcome!

[mnellis63 in reply to Hidden]

Thank you for your warm welcome

[mnellis63 in reply to mnellis63]

Thank you

[Peggy4]

Hi Mark. Just adding my welcome. We all know how you are feeling right now because we've all been there.

Don't worry. The total, all consuming, phase will pass. With the help of everyone here, you will learn to live with your diagnosis honestly.

Try not to read too much on Dr Google. Best to ask your questions here. Lots to learn on this lovely forum.

Please don't feel despondent, there are a lot of good treatments out there for us when (if) needed.,

Keep in touch

Peggy

[mnellis63 in reply to Peggy4]

Thank you

[PE1234]

Hi Mark

Like you and many others I too was diagnosed out of the blue and had to start treatment as I was already stage four .You may never need treatment as this disease can stay very quiet for many years .

Before I found the wonderful group on this forum I was so afraid I thought that was it for me but here I am almost 2 years later (and having Ibrutinib as my treatment) back enoying life once more .

I do sometimes get a little emotional but I find I can pick myself up and brush my self down and get on with living these days which I found quite difficult before .

Try to stay calm ,take one day at a time and remember there is always someone on here who will advice and listen to you .The people here understand and for me without them I really don't know where I would be .

As Peggy said stay away from Dr Google .

Be careful who you tell as a lot of people don't seem to understand that this is a cronic disease and we are not all going to drop dead tomorrow.

Enjoy the new you and welcome .

I hope you stay without needing treatment for many years to come or never .

Brenda ☺️

[mnellis63 in reply to PE1234]

Thank you

[mnellis63 in reply to PE1234]

Thank you

[mnellis63 in reply to mnellis63]

Thank you

[abikaasa]

This is a very sensible and supportive forum. It has been educational, empathetic and I have seen others being empowered by it. it is one of the elements that has allowed me to retain a sense of perspective on my journey. Take care and continue to enjoy life, the two are not contradictory....

[mnellis63 in reply to abikaasa]

Thank you

[richutchens]

I was diagnosed at 64. I had a little different prospective. Never really thought more about it until 3 years later when my watch and wait turned south really quick. Just don't let the diagnosis take up space in you're head. Live a normal life. You'll be just fine. If and when the day comes you need treatment, then you might get concerned. Worked for me. It's not a life sentence unless you allow it.

Great folks here with a wealth of knowledge.

[mnellis63 in reply to richutchens]

Thank you

[Loves2walk]

Hellos and welcome Mark. So sorry you had to find this forum, but I assure you you will be in good hands here!

My husband was diagnosed much like you, a year ago, symptom free, on W&W. We went through all the emotions then that you are feeling now. Let me assure you that better days await! It may take awhile, but you'll soon feel like yourself again, your "new normal". CLL will always be on our minds, some days more than others, but we've moved on, have both chosen a healthier lifestyle, and enjoy whatever each day has to offer.

My husband prefers to face it on a need to know basis, where I want to know all about this thing called CLL is all about.....which is how I stumbled upon this site. I quickly stopped checking any other sites, even cancer society ones. If I have questions I source it out here. We have learned so much more than the specialists told us. This site is a wealth of information by people living with CLL.

Take care and here's to a very long W&W!

[mnellis63 in reply to Loves2walk]

Thank you

[Kiannjo in reply to Loves2walk]

We are in precisely the same dynamic as loves2talk and 1 year in we are just learning to manage the mental health toll the diagnosis takes. We now have many more good days then bad and are settling into looking for the silver linings to be found like appreciation, gratitude and cleaner eating 😁 the feeling of doom and gloom will most assuredly subside as it has with most or perhaps all on this site. Best wishes.

[pkpayne]

Hi Mark, Everyone on this site has been right where you are right now. I still feel new myself even though I was dx in April 2016. I guess it's because I don't understand most of what I read about it. So saying that, you aren't alone and there are so many knowledgeable people here that will be able to answer almost anything you ask. And please feel free to ask. We are all here to support each other along our journeys.

[mnellis63 in reply to pkpayne]

Thank you

[Cllcanada Top Poster CURE Hero]

After almost 20 years of surrealism, I have a hard time deciding who I like best, Miró or Dali.... 😜

Welcome from the frigid North...

~chris

[mnellis63 in reply to Cllcanada]

Thank you

[scarletnoir]

If you thought you are in good health, then presumably you have no (significant) symptoms. With any luck at all, the CLL may not progress (at any rate) so that you'll continue to feel good... even if it does, the treatment options are improving all the time, so that if you don't need treatment for a while you may well get a very long remission, or even a cure.

Don't let it get you down. If you feel good, go on living your life... and if treatment is needed, make sure you use this site and others to inform yourself before discussing what needs to be done with your doctors!

[mnellis63 in reply to scarletnoir]

Thank you

[mnellis63 in reply to scarletnoir]

Thank you

[NMMP]

Welcome - it is and will continue to be an emotional ride.