Just found this site

[podris]

Was diagnosed with CLL May 5 2020 after a routine blood check.Just learning to cope with watch/wait something im not used to but am coping most of the time.Does anyone have suggestions on how to cope?

[Shepherd777]

We have been coping with CLL for 5 years with the worse prognosis possible (17P and TP 53) and given two years to live when new oral medications came on the scene.

As you begin to read this form you will find for most of us the CLL nightmares are not what they once were. Many on this sight have lived for 20 years as it progresses slowly and sometimes not at all. Recently they have been reporting if you are 70 or older you will probably die of something else with the progress that has been made in medicine.

[podris in reply to Shepherd777]

Im beginning to realise that this really is not as bad as it could be.Just trying to figure out where i belong on this line with 11qand 13q.

[bigunwill2 in reply to podris]

Join a support group. It helps with educating as well as learning from experiences of others. You can find one close to you on CLL Society web page. Now is a good time to find one since all are meeting virtually on a Zoom platform.

[Catnap7 in reply to podris]

Hi I have both 11 q and 13 q plus 17 P

Chemo did me NO good. I got in an Ibrutinib and Venetoclax 2 yr trial for relapsers. It will be over in November

I got MRD negative in January or months before according to the trending of my blood work According to the latest it should help with long term survival ..... There are so many new combinations of drugs to help us now. We with CLL are so fortunate to have found Healthunlocked.com You are going to learn so much 👍

I hope my story gives you

LOTS HOPE so you can help others

Catnap7

[Superdad3]

Hi Podris,

I can only speak for myself, what helped me was educating myself so I didn’t feel so helpless, becoming my best advocate when speaking with doctors, navigating through the vast amount of irrelevant and outdated information and gaining confidence that there is a level of normalcy for many of us before treatment and for those who are going thru treatments. Staying active is also important if you can. Whatever it is walking, working out, biking what fits your lifestyle and schedule. Avoiding getting too consumed with the diagnosis which can lead to more stress and is counter productive. This all sounds easy and it is and it’s not. It took me a good 6mths to a year and I still have my down days, but I also have a lot of better days. I try not to make haste decisions but also don’t put off things that I can do now. I find simpler and less complicated is a good thing. I appreciate my family and friends, while steering away from people that are not so kind. It’s very easy to forget what’s really important and before being diagnosed I was cruising right along life. Now I stop as much as possible to take it all in. You will find your balance and what works for you. Best of luck hope this helped

[podris in reply to Superdad3]

sounds great to me i work in my gardens a lot and do whatever i can when i can thanks and good luck

[AussieNeil Partner Administrator]

Welcome - you have plenty of company finding the adjustment process a challenge. Have a look through our Pinned Post section here:

healthunlocked.com/cllsuppo...

This post in particular has references to posts where others have shared their experiences of coming to terms with their diagnosis:

healthunlocked.com/cllsuppo...

Check out the Tips posts too.

Neil

[podris in reply to AussieNeil]

Thank you i will look at those posts

[AnneHill in reply to podris]

Hi, I have had cll for 19 years. I was diagnosed like you with a routine bloodtest aged 43.

It was very early days and was 9 years before I needed treatment.

Chemo was fcr and was the best at the time. I had 5 years remission and 3 years watch and wait. I have been taking ibrutinib for a year and my numbers are good. This is one of the more modern treatments.

The reason I am telling you this is because apart from 6 months of chemo my life hasnt changed. I do suffer from fatigue though.

It is a shock and I was really scared when diagnosed. No websites! When you are ready you may find that it is best to get on with life and be happy. Things are improving. I just pop a pill every day. We all hate watch and wait but looking back I realise that if you feel well, why would you want treatment? I wish you well, Anne uk

[podris in reply to AnneHill]

thank you so much for the encouragement

[Shepherd777]

You mention wanting to know where you stand in all of this as 11q and 13q. AussieNeil, one of the adminstrators of this site has sent you some excellent stuff to read.

First, Stay away from Google as its information can be 5 to 10 years old and scare the daylights out of you.

Second, everything you read look for a publication date. Treatments have changed astronomically in the last two years and they are really very effective for a high percentage of CLL patient of all stripes.

What country do you live in? This will determine whether the newer treatments are available where you live and suggestions of CLL specialists to contact if needful at some stage in your journey. Also, most everyone one on this site has been on watch and worry/wait for some period of time. Some spend about a year on watch and wait and some are still on watch and wait after 15 years. Everybody is different.

Finally you are going to meet some great people on this site and develop some precious friendships.

[podris in reply to Shepherd777]

thank you im in the us ohio specifically

[Hilomom]

Welcome. Yes, this diagnosis is very scary. It was this group that brought me comfort, information, support and they are an invaluable source of knowledge. Don't hesitate to ask a question or share a fear or confusion. I find that keeping busy keeps my mind off of my diagnosis and that in turn keeps my attitude more upbeat.

[podris in reply to Hilomom]

thank you

[Jimbo5491]

Morning Podris, I was diagnosed 8 years ago same as your good self through a regular blood test. Initially I was shocked and after talking to the haematologist decided I would just get on and live life as normal as I could. Most times I don’t even think about it, I have my regular blood tests every 3 / 4 months with my readings fluctuating up and down. I’m still on watch and wait just enjoying life the best way I can, play golf enjoy a drink and good food. Hope this helps. All the very best.

[podris in reply to Jimbo5491]

thanks im sure it will

[Kittyc]

Hi there, I have been on watch and wait for 7 years and initially I worried everyday about how life would be. Then I decided to put it to the back of my mind and concentrate on what I used to do before diagnosis. I have some bad days, but always try to look for the good things in life. I love socialising and have many hobbies and have done silly things like walk over the 02 Arena. Keep your mind positive and stay as active as you can while you can, w & w can go on for a long time. Don't waste that time, enjoy every minute.

[podris in reply to Kittyc]

thank you i wont worry and i will and am enjoying

[lexie]

Been on W&W 5 years and what I like about this site is how quickly you get a response to questions and all the archived relevant posts. There is comfort in just those aspects. The information on here that I have read has been high quality and in line with my CLL specialist.

I was back in college as an older student in the process of working for another degree when diagnosed. I cut back to half time to deal with all the testing and other appointments but having to focus on studying really got me through the first year of diagnosis. I am not saying classes are the answer for everyone but happened to be exactly what I needed at the time. In addition to being a distraction, they offered some structure to my newly chaotic life.

[podris in reply to lexie]

thanks

[Horatio2]

I am so glad you found this site/group. I was also recently diagnosed (January 2020), and my emotions have been like a roller coaster. This group has been wonderful and just knowing I have everyone here helps. I go July 8th for my 6th month blood work and am on W&W at the moment. For me, it has been the W&W that has made me anxious. It just seems so contrary to everything I thought, and I want to fight. I have to remind myself that W&W is what I need to do for myself at this particular time.

[podris in reply to Horatio2]

this is so true i have always fought and now i have to wait? Getting blood draws every 2 weeks

[mehall51]

Chin up; you will fid all the support you need on CLL support. Great bunch and lots of knowledge. All here at at various levels of CLL progression. I had Chemo (FCR) 5 years ago and still enjoying life.

Stay strong

Michael

[podris in reply to mehall51]

I am finding out that people on here are good people and have already helped

[Ghounds]

Welcome podris. As advised stay off Dr Google, read the pinned posts, get up to date with non live vaccinations, stay clear of people who have colds etc and do what you enjoy. No question is too big or too small, no question is silly. We've all been where you are now and we get it. Also maybe consider carefully who you tell. Reactions can vary and you can't untell people. You aren't alone, we are here for you. One more thought...Try not to be spooked by some of the posts about treatment, they can be scary. One third of us never need any treatment and drugs are improving all the time.

[podris in reply to Ghounds]

Thanks as far as google i learned quickly a lot of that is outdated thanks for the encouragement

[Ghounds in reply to podris]

You're very welcome.

[Lakeviewg]

Welcome podris, I am also 11q del, 13q del and unmutated lgvh and was diagnosed in 2014. I was in watch and wait for 6 years. I started treatment (Ibruitinb) in mid March this year and things are going well with it. I saw results in less than 2 weeks.

You are fortunate to have found this site, everyone is so helpful and there is so much excellent information here. I wish I had found this site much sooner (just recently found out about it). Before finding this site I had to do a lot of digging and searching and at the same time ensuring it was reliable and up to date information.

It sounds to me like you are under good care having already been tested for markers. That wasn't done for me until late last year for one of the tests and early this year for the other test.

As many have said treatment is much improved since I was initially diagnosed and getting better all the time.

May you have many years of watch and wait, the longer the better as treatments continue to improve.

Best wishes to you!

[podris]

Thank you so much for the encouragement.Am now finding out i have been exposed to covid but had a test and it was neg. Have a great day