Feeling numb : Just received the 2nd set of... - CLL Support

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Feeling numb

1-12-32 profile image
26 Replies

Just received the 2nd set of blood tests from an un-connected complaint, for the cell markers conclusion to reveal I have CLL.

Currently I feel as well as a 59 year old could feel, I am trying to come to terms with what I have been told, my GP has since reffered me to the the local Hematology department.

Any supporting help or advice would be much appreciated.

Many thanks

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1-12-32 profile image
1-12-32
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26 Replies
cllady01 profile image
cllady01Former Volunteer

Welcome and sorry to hear of your diagnosis of CLL. However, you have come to the best site for sharing and learning about CLL. It would be helpful to know your country.

Let me say one thing that you may already know, CLL is in most of us a slow-growing and manageable cancer and there is a lot of research ongoing as well as more than one or two treatments already approved with some being tested in ongoing trials. So, there is not a sense of urgency in the diagnosis because, there is time to watch and wait before any treatment has to be suggested.

The following posts are important and helpful esp. to new members:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

1-12-32 profile image
1-12-32 in reply to cllady01

Thanks for your reply it is much appreciated, country = England

devonrr profile image
devonrr

When you are first told it is absolute horror, your sky falls in.

Once you have your haematology appointment all will be explained.

CLL is a CHRONIC blood disease. You live with it rather than die from it. Science and research are making us with CLL live long healthy lives.

You can start googling now for extra info or wait till your appointment. Any queries, write them down there will be a lot to take in over the next two weeks.

You will accept your diagnosis but others will think of Cancer when you go bald and thin and vomit everywhere. Not this cancer. You will make friends and dismiss others. If one in two people are to get cancer(they tell us) I choose CLL.

Lots on this website with lots of personal experiences most good with a couple of horrors.

Best wishes

in reply to devonrr

the most important thing in my opinion is don't google and read stuff more than 1 year old. also although finding dates is important. i've found things that look current are actually copies of older material.

J_88 profile image
J_88 in reply to

Agreed.

1-12-32 profile image
1-12-32 in reply to devonrr

Many thanks for taking the time to reply, every positive comment helps

AutumnJ profile image
AutumnJ

Hi 1-12-32, I was diagnosed 6 months ago and everyone here knows the shock of the diagnosis, especially when you are well. Everything I have learned has come from this forum and the amazing people who post and share their knowledge. Waiting for the appointments is hard but hopefully you will have a long and uneventful watch and wait 🤞🤞

1-12-32 profile image
1-12-32 in reply to AutumnJ

Many Thanks for your reply

GMa27 profile image
GMa27

I was on W&W 11 years (52 to 63) before needing treatment this past year. I felt great all thru W&W and chemo.

Hopefully you will be on W&W a long time. After initial shock, I just went on with my life and got my 3 times a year check ups with my oncologist. 💕🙏

1-12-32 profile image
1-12-32 in reply to GMa27

Many thanks for your reply I have my fingers crossed

SlowCLL profile image
SlowCLL

Dear 1-12-32,

Welcome. Being told you have CLL is a life changing event, we have all been where you are right now; confused, afraid and angry. It takes some time to get past these initial feelings. But you do come to accept and recognize the need to respond to your new circumstances. CLL is a manageable illness, and to take back control of your life you have to be an active manager.

There are many of knowledgeable & compassionate people on this web-site who are willing to help.

Owen

1-12-32 profile image
1-12-32 in reply to SlowCLL

Thanks Owen it all helps

Cllcanada profile image
CllcanadaTop Poster CURE Hero

Welcome to our community of CLLympho-manics

I just had my quarterly blood draw a few hours ago... after 21 years and 5 lines of CLL treatment... its become a ritual now...

Good place to start your journey is this publication...

In the U.K. things are done differently than the U.S. and we lack broad treatment options and many clinical trials, but the basic science in this guide is accurate and current.

nccn.org/patients/guideline...

There are no quick fixes and many quacks.. so choose your knowledge wisely.

~chris 🇨🇦

1-12-32 profile image
1-12-32 in reply to Cllcanada

Hi Chris

Many thanks for the advice and info

Psmithuk profile image
Psmithuk in reply to Cllcanada

Love the lymphomaniacs! Good description😄

Panz profile image
Panz

Just wanted to welcome you to the community....it is the best. I just stumbled on to to last December. I am a very long timer with CLL having had it for 30+ years. I learn something everyday as I read most of the posts. I have on Imbruvica 420 mgs closing in on 3 months...I am feeling great! I do receive IVIG every 4 week and that keeps me in a very safe place. Over the years CLL wears down the immune system. There is a lot to learn so go at it slow and easy so as not to be overwelhemed. We are all here for you! 🙏💕☘️😍

1-12-32 profile image
1-12-32 in reply to Panz

Hi Panz

Thanks for your reply, I have been overwelmed by the responses to my short introduction to the community.

I must confess I am trying to get my head arround the abreviations and medical treatment names. so going slow as I write my replies trying to take it on board

MichelleM61 profile image
MichelleM61

Welcome to the Group! We've all been where you are. It is terrifying to hear we have cancer and become numb and can't hear what the doctor is telling us. This is a Great group and full of Great advise and we are all here for each other. From all over the world. I am 57 and diagnosed with CLL and have probably had it for over 5 years. I am W&W. Defiantly get 2nd opinion after you have done some research about CLL. I went to MD Anderson in Houston Texas for my 2nd opinion. Man, those people are Awesome! I now have my doctor/hematologist/oncologist here in Oklahoma and my doctor at MD Anderson. I feel much better now. One of the best things is your Chronic and not Acute. This is a slow growing cancer. After I got my second opinion I decided to just go about normal and LIVE my life.

Hang in there and breathe . . .

1-12-32 profile image
1-12-32 in reply to MichelleM61

Hi Michelle

Many thanks for your wise words I still await my 1st heamatology appointment at the local hospital.

Kokobean profile image
Kokobean

It is such a shock to be told you have leukemia when you feel fine and are expecting years of good health. The shock will subside and hopefully you get the best news that your is the “smoldering” variety. We are here to help.

1-12-32 profile image
1-12-32 in reply to Kokobean

Hi Kokobean

Many thanks for your reply

lucijean profile image
lucijean

Sorry to hear you have CLL, I found out as well 1 year ago. I am 62 and took a less stressful job without insurance BEFORE I found out I had CLL. My White Blood count 1 year ago was 18. and now 50 but I am asymptomatic, I feel good. My Dr. at Cleveland Clinic says as long as I feel good and do not have symptoms, no treatment. He believes that at some point I will need treatment but not now. He does not go only by the numbers. This has been a great relief to know. Wake up and live life until you have to have treatment and then face it. It has been a great relief to me to know this is mostly slow advancing cancer. We will face it bravely, insurance or not! This forum has been a real blessing to me.

lucijean profile image
lucijean

You WILL get through this! take it one day at a time, this forum with all these wonderful people who are going through it together will support you and share many hopeful thoughts!

1-12-32 profile image
1-12-32 in reply to lucijean

Hi lucijean many thanks for your reply, i have my 1st visit to the hospital on Thursday so will wait the outcome, not quite sure what to expect.

retired46 profile image
retired46

Hi there,

Join the club🙂

I found out through blood tests to and had the sky falling episode to - it didnt last long though and is normal 🙂 my advice is don’t google as its out of date and can be negative - and listen to your consultant and this site is brilliant. Research is amazing as is treatment available.

I learnt with my family along the way to enjoy every day enjoy people everyday and dont sweat the small stuff - we go through life with eyes closed which is not good, this makes us appreciate things so much more and in my family our saying is - if its not life threatening dont worry about it 🙂 I wish you to continue to feel well.

1-12-32 profile image
1-12-32 in reply to retired46

Hi Retired46

Thanks for your kind words of support, its now approx 5 weeks from diagnosis, I must confess to feeling a little more relaxed after the initial bomb shell, I continue to learn a little more each day reading the various topics on this site, which to me has been invaluable, I hope you are doing ok.

Many thanks

1/12/33

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