Hi Everyone,I'm newly diagnosed with cll as of 2021.
l m on watch and wait.
Was hoping to connect with others and gain some knowledge about tips to staying positive about this Journey.
I'd be lying if I said I wasn't nervous , but try my best yo stay positive.
Live a pretty productive life, that's when it's a good day and to fatigued.
Look forward to hearing from you.
Butterchick.
Hi Butterchick I am walking in your shoes. Just recently diagnosed so I can't offer much advice. I suspect like me you came across this site searching for information. I think the diagnosis sounds worse than the disease is. Feels funny walking around thinking I've got cancer!!! I'm coping well after initial anxieties. My advice don't plan too far ahead, live life to the Max and stay extremely positive. Normally by now my 2025 travel plans would be booked and paid for. Now I'm taking plans 3 months at a time. I wish you luck and hope your anxieties diminish. I am a reiki master so I give myself self healing to De stress. Youtube full of relaxing healing meditations. Try them,it may help. My belief in life is that if I can't change a situation it's time to change my approach.
Hi Turkey treat ,Thank you for your prompt response. You've given me some great advice and tips.
I would say I'm now coping fairly well
Like yoursel, i find it hard to believei say it as well Ive found it difficult at times to navigate through my thoughts once i get a new pain or headache ..The mind automatically goes to the C Word..wonderingif its related. I believe if i can get over that slump ill be good.. Thank you for the tips on destressing/ meditation on you tube.
I do use relaxation videos and audibles to sleep or relax .
You mentioned you've been recently diagnosed .I hope if you've not needed to start a treatment plan and that you remain on watch and wait for quite some time..
Thank you .
Sending gentle hugs.
Hi Butterchick the mind can be so cruel. Like you every litt!e twinge I wonder if it's related to the disease. It's mind blowing and my ignorance before diagnosis now seems like it was bliss. I've just had a round of blood tests and don't see the consultant again til January so hopefully get more info then. My family are taking it hard and I'm spending my energy trying to console them. There are many posts on here that I don't understand when they are talking technical about bloods, so I warn you I read them and my lack of understanding makes it impossible to digest. I'm praying for a normal day when I don't give the diagnosis a thought.
Welcome, I was nervous at first as well. CLL is somewhat different than other diagnosis though. Hopefully you have a long watch and wait period with few disturbances as many do. I have heard of people being on watch and wait for longer than 15 years!
Thank you Rando 21,Thanks for making me feel so welcome , it does help to know it can be a long watch and wait process, and I hope that's the case for myself and many others .
Thank you .
You came to the right place! Also check out CLLSociety.org with information tabs for the newly diagnosed and many articles and webinars on topics impacting CLL/SLLers.
I found educating myself on this disease and current treatments helped me feel empowered, and kept anxiety in check. Welcome!
Thank you DoriZett.This makes alot of sense on Educating one's self and being Empowered to keep anxiety at Bay.I like that..Positive energy.
I'll definitely look into the articles on Cll you've mentioned above. Hope all is well as can be expected.
Thank you .
I have had one treatment with Acalabrutinib for 5 years in a clinical trial. I am in partial remission for 3+ years, back in watch and wait. All is well and as expected. 👍🏼
That's great news .Glad to hear you're back in W & W.and all is well as expected.👍.
Hi Butterchick
Welcome to the club none want to be in.
I was diagnosed 2021 too, tough wasn’t on watch and wait very long. Just coming to the end of treatment V&O.
This is a great place to ask any questions you have about CLL. With people with a wealth of knowledge.
Also a good place to let off steam, no one will judge you as we all know what you’re going through. We’ve all had good days and bad, so we’ll just give you support and a virtual hug.
Try to stay as positive as you can. I haven’t really changed anything about my life, except visiting the hospital a lot more often.
We all need to exercise because that is the one positive way to extend watch and wait. It does not matter how as long as the body is moving and active. If you have someone to join you then that is a massive help.
hi there I too was diagnosed with CLL in 2010 and I’m still on W&W 14 years later. My only symptoms are enlarged glands and a slightly enlarged spleen. I haven’t had any treatment and just try to forget day to day I have it and stay positive. The only precautions I take are to keep away from anyone with any sort of infection. I’m lucky as my daughter is a nurse and if my lovely grandchildren get an infection I’m not allowed to see them, we just FaceTime. It’s worked for me all this time and through COVID I caught it just once and other than a short trip to A&E for a whiff of oxygen I was fine. So stay positive. I have blood tests annually, it used to be 6 monthly but I’m fine with annually, I know when things don’t feel right and I can see a consultant to reassure me. So good luck and I hope your CLL is slow to progress and you remain on W&W
Hello BC - there are lots of good resources here in Canada and for me, in Ontario, including Hematologists both local and at UHN/Princess Margaret Hospital for secondary consultations, Lymphoma Canada, The Leukemia & Lymphoma Society of Canada, Ontario Trillium Fund to pay for meds, and WellSpring.
I was diagnosed with CLL at 59 in September 2018, on Watch & Wait for 20 months and living a perfectly active life while taking 3 Imbruvica/Ibrutinib capsules a day for the past 4 years. Good diet and exercise helps me enormously.
Hello Butterchick
Welcome, welcome. You have arrived at the right place in dealing with CLL. This is the forum of hope and information that will as time goes by reduce your anxieties. I am happy to say that I have been through two different treatments in my 7-year journey. I see my hematologist/oncologist every 3 months and first question asked am I in any pain, I always say no. Blessings.
Hi BigDee,Thank you .I'm definitely glad I've found this site.It has helped to put some of my fears at Bay. It's more the fear of the unknown I'd have to say.
I'm happy to hear you're doing well and pain free , that is certainly a Blessing.
Good luck !.
Hello Butterchick
I too am in Canada and also on W and W. Like you, I went through so many emotions and especially fears when I was diagnosed in 2022. This site has really allayed my fears. There is so much hope and positivity from everyone. I now know there are so many treatments out there and more in the pipeline. Hopefully, you will not need them for a very long time. Good Luck!
Hi Effytor,Thank you for your kind words .much appreciated. .I'm hoping the same for you that we'll not need them for a long time.
I'm much more positive now once I got over the initial shock of the diagnoses.
The odd thing is I wasn't surprised as odd as that may seem.
It wasn't so much the diagnoses that hit hard it was more of ,'now what do I do'.
The unknown is the scariest.
Like you have mentioned , I too have found hope , now finding this site , the positivity has laid some fears to rest.
Hope all is well as can be expected for you and you'll not need them for a very long time as well.
Stay warm in these Canadian Cold winters.
Good Luck!
Hello Butterchick. Seasonal greetings to you too. I was diagnosed in 2020 and commenced treatment in July 2023. I am TP53 mutated and 13 Q deleted so was warned my road to treatment would be sooner than later. In a way it was almost a relief when I started.
This site is wonderful for help, support, information and encouragement. All the best.
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