CLL

[Stavrou1]

Hi everyone

I have only just joined , so am new to this .

I was diagnosed with CLL in September, a big blow to me !. I have been told early stages . Could be years before i will need any treatment . Have had chest X-ray and abdomain and blood test . Feel very lucky am no treatment . I am on watch and wait 3 month monitoring. . Any new symptom , and am in compete panic ! . Is any one else on watch and wait ?.

Last few days have noticed swelling around side of my knees ,also feels like heat around that area when am in bed . Am thinking must be Arthritis....

Is any one else experiencing this ?. Really worrying

Hi I posted something earlier , but forgot to ask if any one else has got lots of small glands down the neck on both sides , am talking about at least 12- 15 on each side ? Really horrible been there at least a couple of years , were probably less than.

Tina 😕

[Newdawn Administrator]

Welcome Tina,

I’ve added the content of your other post to this one to keep your questions together. I’ll delete the other post for you.

Newdawn

[Stavrou1 in reply to Newdawn]

Thank you .

[AussieNeil Partner Administrator]

Hi Tina,

While you are waiting for other responses to your post, read these introductory posts:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

You'll find more helpful posts in our Pinned Posts section here: healthunlocked.com/cllsuppo...

Neil

[bkoffman CLL CURE Hero]

It's a long journey. Watch and wait is the usual approach to CLL as the disease is so variable and a significant minority never need treatment. Small nodes in the neck and elsewhere (groin, armpits) are common, but not every symptom, such as knee swelling should be assumed to be from CLL. We can also have other common maladies. Have it checked out. Ask lots of questions. Front load your knowledge. Get yourself an expert doctor on your team and consider a support group. CLLSociety.org can help with both. Stay strong, get vaccinated, we are all in this together, Brian Koffman, MD (retired) Chief Medical Officer, CLL Society

[Stavrou1 in reply to bkoffman]

Thank you for your reply , very helpful . Will speak to my Dr. Tina

[LeoPa]

Plenty of us on W&W. Relax. Update your profile with some specific info (counts) from your last blood draw if you can. That's helpful to form a picture about your current condition. Focus on the YOU MIGHT NOT NEED TREATMENT FOR YEARS part. That helps with the anxiety. Good luck.

[Stavrou1 in reply to LeoPa]

Thank you Leo , I hope so . Good I idea to add my specific in fo counts to my profile.

[stevesmith1964]

At my diagnosis all my lymph nodes were full, but only 2 slightly visible. I was at stage 4 at diagnosis and went straight on to treatment. To be honest was over the moon that the diagnosis was CLL as working in the bone Cancer field I was concerned it was far more serious when I saw my first blood results.

[Stavrou1 in reply to stevesmith1964]

And how are you doing now Steve? . You sound so calm 😊. At first I had 2 quite visable on both sides of neck , now they are a bit . Am a bit confused with the vessel down the neck , are they lymp nodes !! .

[stevesmith1964 in reply to Stavrou1]

Hi, its been 11 weeks since diagnosis and starting treatment. My visible neck lymph nodes have gone, I feel fit and fine. Busy retires life as I am full time dad to my 3 and 1 Yr olds. I have a scan in March to see if my massive internal lymph node have shrunk especially the one near my heart. My bloods continue to improve.Keep safe.

[Stavrou1 in reply to stevesmith1964]

Fantastic , so pleased for you . Stay well and take care .

[louie48]

Howdy Stavrou1 and welcome to the family. This is a great place to get information and to ask questions from people who have "been there done that". God Bless,

[Stavrou1 in reply to louie48]

Thank you . I wish had joined sooner, It taken me a while to get my head round it. Than stupidly was afraid to read people experiences! . AM so glad I have done . I can relate with some people expierances at this stage . Stay safe 😊

[Tylex4032]

Worry all the time. Feel for bumps all the time. On W&W. Some days are good and some days not so good. Very worrisome. What a scary way to live.

[SofiaDeo]

Please try not to worry! Sometimes I wish our disease didn't have the "C word" because UNLIKE OTHER cancers we don't usually need urgent treatment. We may never need treatment. It's more of a "managing a long term disease state" like diabetes.