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CLL Support Association
11,308 members17,398 posts

CLL diagnoised in May 2018

Diagnosed in May 2018. New to the group and have been unable to find any support group. It is strange that people say you are lucky it is a mild form of cancer, really? I worry more than I ever have. I served on the DMZ of Korea(Army) 1969-1970. I was exposed to Agent Orange for 13 months but proving it to the VA is a joke. Long story and do not want to bore anyone. Still going through the maze of VA bureaucracy.

I have read alot about the disease and find out it is a rare cancer and is only 2% to 3% of cancers. I have had some swollen lymph nodes and one removed near my stomach during surgery for something else. They also found an enlarge lymph on my pancreas.

The unknown is what worries me! I am 69 and I don't worry about death but worry about treatment, no matter how evryone sugar coats it.

Glad I found this site! Looking forward to reading other peoples stories.

Shalom!

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Hi Charles. First, thank you for your service. I cannot address your current questions but I know there are others in similar situations that can. I’m glad you found this site.

Pam

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Thanks! I was proud to serve. The VA seems to make the situation worse by trying to make you look like a fraud and a theft. Does not help my mental health for sure!

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Hi Charles!

The CLL Society has many support groups throughout the US. You can go to their site and perhaps there is a group around your part of the country. Heres the link: cllsociety.org/newly-formin...

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Hi and welcome to the HU family, you won't get support anywhere else like you will here, this lot are amazing.

CLL is not a rare cancer, i was told it is the most common form of cancer and that many people who have it dont know they have it until they have a blood test for something else and that it is supposed to be an illness more common in those of mature years, lol.

I was 52 was i was diagnosed.

CLL is unfortunately a messy cancer in that there are no set rules, it sets its own rules, everyone experiences different symptoms, different experiences and different reactions to the drugs used to treat it. There are no set time frames as to when you will need treatment, how long remission will be etc.

As such the mental health issues of living with CLL are huge, very under rated and very misunderstood and quite often dismissed.

The HU family are fantastic at giving support, help, advice, empathy, understanding and above all the car, friendship and camaraderie that we all need when told we have CLL.

You can ask questions, seek advice, ask for links to topics and subjects, give updates of your journey, compare notes and more importantly you can vent your upset, anguish, frustration and sometimes anger at CLL and the effect it has on your life.

So i hope you will find all the support you need right here, because we have all been in the newly diagnosed boat, the wait and worry boat ( watch and wait)...the nearing treatment boat, the treatment boat, the remission boat and all the other boats that are floating on the CLL sea.

Best Wishes Anne.

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Thank You so much! I feel better just knowing I can talk to folks with the same disease!

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Charles, welcome. If you will click on "search" in the line above your post that begins "Home" "Posts", and type in Agent Orange, you will find relevant discussions to your situation. Also, there is info from fellow Veterans in some of the replies/posts.

I hope you are able to get some help with dealing with the VA. If you don't find help there. Perhaps post your situation with the title containing Vet Dealing with CLL and VA---that should bring you some response from fellow Veterans.

Thank you for serving and best wishes for getting your case heard and tended to.

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Welcome CharlesLove,

We are all in this club that we didn't want to join. I relate to the comments made about anxiety when dealing with this strange cancer. It took me 2 years to learn coping strategies for my anxiety related to CLL. I just passed my 4-year "cancerversary" and am still on active surveillance (my preferred term to watch & wait for the axe to fall).

A point made by a previous poster about CLL being a common cancer is not true. CLL is a rare cancer by definition, affecting less than 200,000 patients (in the USA, I believe). Admittedly, I have seen figures published that CLL diagnosis is on the increase, estimated to be about 190,000 patients, so it may cross the line and become no longer "rare." Having said all that, it is the most common leukemia type diagnosed in adults. Perhaps that was what the previous post was getting at.

Susan

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