CCL Diagnosis: Hello everyone, i was diagnosed... - CLL Support

CLL Support

16,988 members27,581 posts

CCL Diagnosis

Archie_K
Archie_K

Hello everyone, i was diagnosed Christmas eve and because of coved been unable to speak to a doctor face to face. Since being diagnosed i have felt very depressed. Any recommendations to deal with this or something to cheer me up?

34 Replies

It's overwhelming in the beginning. But most of the time it's a slow type of condition. How did u find out you had it and do u have any side effects?

What country do u live in?

Do u have a follow up appt? 💕

Stevevolo
Stevevolo in reply to GMa27

Have had CLL for 17 years, never have needed any treatment for it and besides quarterly blood tests and bi annually Oncology visits have had no disruption with my life. When I was diagnosed in 2004 had no clue what CLL was but my MD at the time said you are more likely to die with CLL then of CLL

Hello Archie, well I think depression is a natural first reaction, I was terrified. But my diagnosis was back in 2007 and I don't even think about CLL now on a day to day basis! While everyone is different, try not to worry as you are hopefully going to be able to have a good what they call "watch and wait" period before any treatment interventions are needed. And as time goes by more and more amazing new drugs are coming on line to help us, so much progress even in the time since my diagnosis.

Once they all wake up on here, you will get loads of encouragement and support, I know I did. Don't be afraid to ask questions on here as there are many very knowledgeable people who will be able to answer them, or signpost you where you can find answers.

I suggest you stick to this forum for answers and avoid other websites about CLL unless you know they are a reputable source.

What a rotten time to be diagnosed too! Spoilt your Christmas, as if Covid hadn't done that already.

Try to keep your chin up, there are loads of us in the same boat, and we are all keeping afloat, especially with the encouragement of each other.

All the best, Holly.

Archie_K
Archie_K in reply to holly2

Thanks for the email much appreciated

Hi Archie_K,Well I imagine that wasn't the kind of Christmas present you were hoping for! I was in total shock when I was first diagnosed and it took me a while to get my head round it. I was diagnosed in September 2018, I wish I could just go back and tell that version of myself to take a deep breath! I feel for you getting a diagnosis in the middle of a pandemic and not being able to have a face to face with your doctor. There is a lot of info on this site and someone will always respond to any questions that you have. Take the time to find out about this condition and above all, be kind to yourself 🙏🏼🙏🏼

Archie_K
Archie_K in reply to AutumnJ

Thanks for heather email much appreciated

Jm954
Jm954Administrator

Hello Archie and welcome to this community, where I hope you'll find the friendship, support and information that you need.We all remember that awful sick and depressing feeling that comes as part of the news about your diagnosis and it does pass but it can take a little while. You haven't said anything about any treatment so I presume that, like most people newly diagnosed, you are on watch and wait.

Please use this watch and wait time to learn about your CLL, new treatments, get fit and lose weight if you need to and mostly, how to live well with your CLL. There are a number of Pinned posts to the right of your post full of valuable information for the newly diagnosed, which are even more important as we are in a pandemic and you may not have the support of your doctor or clinical nurse specialist who are looking after you.

CLL is a heterogeneous and complex disease so everyone's CLL is unique to them and so is their journey. Take your time. with the information and don't expect to completely understand it and the interactions between different parts of it immediately, it will come in time.

Please ask any questions you have, there are lots of people willing to share their experiences and information and all questions are welcome.

Have a look at the Pinned Posts and make yourself at home here. This is a safe place to express your anger, frustration, sadness and every other emotion you're feeling, we have all been there.

Best wishes

Jackie

Archie_K
Archie_K in reply to Jm954

Thanks for the email much appreciated

Hi Archie. Welcome to the family. Its a rollercoaster of emotion upon diagnosis. This forum will advise and support you. Ask questions, have a rant or just converse. we are all here for you. Please do not consult Dr Google and try not to dwell on your condition. Try reading or walking perhaps to take your mind off things. Take care and best wishes.

Archie_K
Archie_K in reply to Jacksc06

Thanks for the email much appreciated

Archie-some people are comparing CLL to diabetes! Thank God your Oncologist has many options-many treatments-many treatments specifically are also available if first plan not successful --AND some patients with slow moving malady never require any treatment.My case Imbruvica for 20 months now-I believe my next months bloodwork will be very close to normal----most CLLers have luxury of time to make decisions --often years

7 year survivor! BLESSED!!!

Archie_K
Archie_K in reply to wilhoitaz

Thanks for your email I didn’t realise there was so many people with this condition

Thanks for your email much appreciated

Archie, stick with this forum! 😊 Sandra

Archie I was diagnosed on Dec to,. December 13 was my birthday and then the holidays.. I’m on what they called Wait n Watch... I thank God that a friend introduced me to this beautiful group of people.. I’m new here but they make you feel like Family! 😍

Archie_K
Archie_K in reply to Paulibiris

Thank you for your email

You have come to the right place. So many informed people here can answer your questions and cheer you on. Another good source of information is the CLL Society. They have information about CLL.

Archie_K
Archie_K in reply to dmmck

Thank you for your email

As stated above, stay away from Dr. Google! cll Society.org and LLS.org are reliable resources, but don’t get overwhelmed. Start with the basics and the glossaries and don’t expect to understand everything on a first read. You will have time to internalize things later.

Thank you for the email

Hello Archie_K

You have done the best thing you could do, which is log on to this site. This forum will help you come to grips with your diagnose and learn how treatable CLL is today. Blessings.

Archie_K
Archie_K in reply to Big_Dee

Thank you for your email

Hi Archie - I was diagnosed in December too, I was told in July that I possibly had markers for CLL, but my GP's were very uninterested and inactive. After numerous phone calls to the practice, they agreed to refer me to the haematology department. The letter which I could see the practice on line portal contained one line, and I was added to an 18-week waiting list. The letter contained no supporting evidence of being ill most of 2020, so I took matters in my own hands. I rang the haematology secretaries at the local hospital, I asked if I wrote an email could they pass it to the haematologist, they said "yes". Within 1.5 hours I had a reply and was seen the next day. I think because of COVID-19 things are in a bit of an uproar, so some positive action would not go astray. Even if you can just talk to the Specialist Nurse. I think we all know how serous the things are in the hospitals, but we must make sure that patients who need to be seen are seen, so they can help themselves. Good luck and hope you find some help, this is a great site and the few days I have been on has helped me immensely.

Archie_K
Archie_K in reply to LizGB

Thank you for the email

Welcome Archie

As you have a chance to adjust to your new diagnosis, you will relax a good bit with this illness. When the diagnosis was unexpected, I'm sure it is a significant shock, especially because of the part of the name that reads Leukemia. I was the fourth in a direct line in my family when my diagnosis came. There is now me, my Father, his Mother, and her Father, so when mine came I was sort of expecting it.

What separates our illness from the scary word Leukemia is the word Chronic. Regular Leukemia spreads quickly to other organs and parts of the body, and the results usually are not what one would hope for. With Chronic Lymphocytic Leukemia the cancer usually stays in the blood; although, it can ultimately spread. More normally it does not spread, and we frequently are not treated for years.

While you haven't yet had a chance to meet with a Specialist, and I'm sure that is daunting, the upside is this illness normally grows very slowly. We'll likely be past the struggles with this version of COVID, before your illness has gotten very far. If the time until you can see someone grows longer and longer, there are many on this site with a very high level of knowledge.

You'll find this site a blessing, and the amount of friendship and knowledge you will find here is great.

Carl

Archie_K
Archie_K in reply to wizzard166

Carl thanks a lot for your email

You're not alone. See the first reply to this recent post, which you will find especially helpful healthunlocked.com/cllsuppo...

Another bit of good news is that CLL patients in the UK have access to a some very effective treatments and year by year the list grows.

Archie, you are among friends and have come to a very special community.....you are not alone as you might think....this is a mighty big boat!

🙏🎄💕 Panz

Oh Archie Christmas Eve! What awful timing, as if 2020 hasn’t been bad enough! Just adding my welcome to our friendly,supportive group.Peggy

HiSo sorry to hear how your news had to be delivered on Christmas Eve, I can totally understand why you are feeling depressed. You’ve found yourself an amazing support group with the most updated information and knowledgeable supportive people.

I remember getting my diagnosis it was truly shocking, cried for months. I didn’t find this group right away and googled lots of outdated information that scared my husband and I so bad. One day at a time, use this site to ask anything you want to know and you will be directed to the information.I’m in my 7th year since diagnosis and feel great.

Miller1960

Archie_K,

Much of the needed cheering up comes over time with the knowledge of available treatment options and the increasing personal successes from those treatments.

Within this forum you are in the company of many like yourself who are living with CLL, sharing credible knowledge from the research community, our personal challenges, ideas for improving quality of life, and our personal successes.

Here are some additional resources that I provided in an earlier post that you may find as a place to start in growing your knowledge about CLL and attaining some of the much needed cheering up.

From Previous -

"Please be encouraged that with the recent dynamic in CLL research, there are newer novel therapies available. The newer treatments are also very efficacious and more easily tolerated compared to the previous chemo therapy. Many of us here are the beneficiaries of either participating in a trial for one of the new agents, or we are a recipient of a newly FDA approved drug."

Go to the Cllsociety homepage and check out the drop down menu under Basics on the menu bar at the top of the page by hovering over it with your cursor. cllsociety.org

Patient Power is another user friendly advocacy resource - patientpower.info/?utm_sour...

Hope you get some cheering up soon,

JM

Welcome, Archie. I'm coming up to 15 years with my diagnosis. For each of us CLL behaves in its own way, but I haven't had any treatment and am doing great! I worried myself into a dither in the beginning. I didn't get a shred of information from my oncologist, went straight to Google but I didn't know what to believe. The Leukemia and Lymphoma Society were my first support, then slowly I found others. You have come to a stellar site!Hold steady.

"Worry doesn't empty tomorrow of its sorrow. It empties today of its strength."

Corrie ten Boom, Holocaust survivor

marcyh

Walk, whenever, both for mental balance and combination with therapy. Walking-treadmill $400 - . Watch TV while walking. No outside cold, heat, rain.

this is very difficult. get support from friends join a local CLL support group. Join CLL society. after you are done crying and being depressed you have to face the hard facts. I was told I had a five year life span. Fortunately the doctor was looking at old data. Find a CLL specialist. MD anderson is an expert facility in CLL

You may also like...