Newly diagnosed

[Wilcop]

Hello I have just been diagnosed with CLL - it scares me. It was found by a routine blood test and showed wbc of 15.9. Don’t know what to do or thinks

[AussieNeil Partner Administrator]

Hi Wilcop,

Welcome to a community you didn't want to join, but will be very glad you have.

The posts below in our pinned post section will help you to get up to speed. Take your time. Your WBC is fairly low, so I expect you are in the very early stages of CLL, though your lymphocyte count is a more accurate way of measuring your CLL. Incidentally, because CLL is a slow growing (chronic) cancer, yours is a common way of being diagnosed. We have members in watch and wait with counts of several hundred.

healthunlocked.com/cllsuppo...

and

healthunlocked.com/cllsuppo...

Neil

[Phil4-13]

Wilcop, stay with us!!! The information and support is the greatest here. My doctors are impressed with the knowledge I have reaped from this forum. I am 73 years young, diagnosed 2 years ago with WBC of 54. I'm in W & W( not in any treatment), my WBC is 106.3 as of this month, June 2022. My other blood numbers are not bad so still no treatment. Ask all your questions with no thinking that a question is silly. Someone here will have their experience to share. This forum has kept me confident that CLL is slow progressing and that the ongoing research for better treatments, hopefully leading to a cure, is very rapidly progressing. 🙂 Sandra

[Kvb-texas]

Hi Wilcop - I totally identify with you. It came as a shock to me as well. But, as I learned more about it, it became much easier to deal with. This site helps a lot because you will learn the nuances of different treatments and hear very encouraging stories. For me, it took about 6 weeks for the shock to wear off. I am on treatment now and experiencing no side effects and feel pretty well overall. The good news, you will learn, is that there are many effective treatment options that will keep the CLL at bay for many years in most cases. Plus, they are making new advances all the time. So it’s highly possible when you need to start treatment you will have many effective options. And if, after many years, if you exhaust those options… it is likely something new will be available. I know it’s very hard in the beginning, but with support, the shock will wear off and you can return to a point where you don’t think about it too much. I wish you well and hope you don’t require treatment for many years. But, if you do go into treatment, it’s not so bad either. I have continued to work at my job and live life as close to normal as possible. Hope you stay encouraged! Kvb-Texas

[annmcgowan]

Hi Wilcop it’s normal to feel as you do right now, I certainly did. However, as others have said you are on the right site to educate yourself. I learned everything I needed to know here. I was 6.5 years on watch & wait and in treatment now 4.5years. I live a normal life.

Around a third of us never need treatment, that could include you.

If you do, don’t fear, there are many new treatments are out there to support you.Take care

Ann

[noeagaman]

Hello Wilcop and welcome to a great place to hang out and learn about CLL. There are so many people here that are in the same boat that you are in and can give great advice.

I was diagnosed back in 2015 and what a shock that was. I needed treatment after two years and ended up on one of the older treatment plans (FCR). Now I have been in remission for five years and feel great! With all of the new treatments available, very good outcomes are possible and more are coming out all the time. On top of that you may never need treatment.

Here's to a long and maybe even permanent watch and wait period for you!

Chris

[Yalokin]

Wilcop, welcome to our ranks.

Have full confidence that here you will receive help of all kinds.

I have also been here recently and fully share your concerns and questions.

Try to learn more about our disease so we can manage it better.

Find a qualified hematologist with experience in the treatment of CLL. Here, colleagues from the UK will help you, I'm sure.

I will be happy if I can give you all the strength I have, Good luck and do not be afraid. Everything will be better than you think now.

Yalokin, Bulgaria

🍀

[Panz]

You have indeed come to a very special place and you will soon know you are not alone!!! Nothing surprises us and we have all been there!!!

Panz 🙂🙏💕☘️

[LittleNelly]

Hi there Wilcop , welcome on board . Try not to panic , it’s understandable and we’ve all been there , but take a deep breath in and slowly out and then read all the positive comments on this site . I’ve been on watch and wait for 10 years now , my ALC is 130 + and apart from a bit of fatigue ( nothing I can’t handle ), I’d say I’m fitter than most of my friends and family . You’ll soon learn how to take a little extra care of yourself here and there and I’ve personally found that the nhs takes very good care of me - I’m sure you’ll have a similar experience.Best wishes and positive vibes coming your way .

[al444]

Don’t think about it , life goes on as usual , just check your blood every 6 month , eat green vegetables and citrus fruits do sports as much as u can , enjoy life .

[stevesmith1964]

HiI was diagnosed from a routine blood test in Nov 2020. WbC 3.6, hb 80, platelets 44. After BMB I was so relived it was CLL as I thought it was Mylofibrosis after reading the film report. I was confirm stage 4 unmutated, after a transfusion I went straight to Obinutuzumab and Ibrutinib , was in remission in 240 days. I am on daily acalabrutinib and live a full pre Covid pre CLL as a 58 year old as a full time dad to my 4 and 2 Yr old. Keep positive live life the drugs are great

[peghip]

Hello Wilcop, I was a little younger than you, 59, when diagnosed by routine blood tests in 2016. Everyones CLL journey is different, having been told that people can take years before needing treatment I started treatment about a year later, I've met someone who was on w&w for 25yrs and still didn't need treatment. On diagnosis I was somewhat in a daze not knowing what the future held. Driving home I decided there were two routes, 1 worrying about the fact I have a cancer and let it dominate my life, or 2 accept I have a cancer and deal with things when they occur. I chose the 2nd route and the daze lifted, although it still took a little time to get used to the reality. This is what worked for me it doesn't mean it will for you, we're all different.

Yes you have a cancer but you also have a life to live, probably people to love and to love you. We live in a pretendy land, we know we have CLL living our Iives as normally as we can, we just have to be a little more aware of reducing risk of infections.

This group has a lot of experience if you have any concerns just ask a question or write about how you're feeling.

Having had treatment I'm in remission feeling very well and full of the joys of life.

[kitchengardener2]

Hello Wilcop, sorry you have been diagnosed with CLL but so pleased you have found our group. Here we share worries, highs and lows but we are always positive towards each other. You could go for many years in watch and wait but if you need treatment, this has come on in leaps and bounds and we have great optimisation. Newly diagnosed you are in shock and worried but my consultant answered my questions with honesty and some humour, I said will I die and she said that I would one day!!

Ask to be linked with a Community Nurse Specialist, mine is my rock and will get answers very quickly.

Stay with us on here and things will get easier and look brighter.

[Fran57]

Hello and welcome.Please don’t be so scared… my husband was diagnosed in 2013 and it was terrifying, but it really doesn’t need to be.

You will be so glad you have joined this very supportive group 😉

There are some very kind and knowledgeable people here.

You can do this…you will soon not even think about it very often 😊

As everyone has already said, it will become much easier.

If you have any questions at all, just ask here.

Stay safe,

Fran 😷

[BayfieldAnnette]

My husband was diagnosed with CLL just over 5 year's ago, and had it low grade, and his was found in a routine blood test. He was on watch and wait for 9 months before starting ibruvinib a chemo treatment, and been in remission for 4 years , and has check ups every 3 months, because he's still on ibruvinib, and he sees his onclologist twice a year. Good luck on your journey.x

[PaulaRichmond]

Welcome. It’s about six months mentally to relax and wrap your head around your diagnosis. I was diagnosed at 56 and now 60. Been waiting and watch the whole time. Every 6 mo blood draw and oncologist. Keep the faith. You will push through this diagnosis.

[Cindi73]

Hi and welcome, that's how I found out in 2016. You definitely came to the right place for support. The people here are so knowledgeable and helpful. Wishing you the best.

[oilraguk]

Hi Wilcop, you’ve come to the right place to seek help and assurance. The people on this forum are amazingly knowledgeable and welcoming. You may want to check out cllsupport.org.uk the website of the patient led Charity CLL Support - they run a range of entirely free patient support services including a helpline and mental health support services (cllsupport-act.org.uk) to help alleviate worry and anxiety.

[jerard59]

Hi Wilcop,Welcome to our awesome community. I like you was diagnosed during a routine physical in 2017 at age 57. My first reaction to the Doctor was, Okay what we we do now? I was taken aback when he said nothing we just monitor it. I went home with my head spinning and then started reading everything I could and eliminating old info and concentrated on more recent articles and journals. It took me six months to fully accept my fate and return to a normal life. In the USA we have a wonderful organization LLS.org that was a wealth of information. I got involved in their fund raising and took advantage of their free programs and assistance. It was then that I learned to let the doctors worry about the disease and get on living my life, it is a short as we learn as we age. Fast forward 2021 my disease progressed to the point where it effected my quality of life so my awesome specialist Dr Anthony Mato and I agreed it was time for treatment. I enter a Trial for Frontline Treatment using Venetoclax and Obinutuzumab, V&O for short, and after just 6 months of treatment I became UMRD or undetectable minimal residual disease and have been since. After 9 months, no more pills or infusions and I have gone back to a normal life with more energy and vigor than I had prior to my diagnosis. I did rework my diet and went back to the active lifestyle I had before my diagnosis. I figured given a life extension I better make the most of it.

In summary Wilcop do not consider this a death sentence by any means, it's just another bump in the road on your journey on this planet. Treatment is not guided by the blood numbers but by how the disease effects the quality of your life. So get on with living, you could go your full life and never need treatment. Just know there are treatments today for some of the various flavors of the disease that may just be a cure. Find comfort knowing there are awesome doctors and researchers working to bring the next generation of immunotherapies to the market that will help us kick this to the curb.

[bennevisplace]

Hi, see also this thread, initiated a day earlier by someone in your situation healthunlocked.com/cllsuppo...

[Hidden]

Hello Wilcop,

Take care of yourself, be good to your mind. You will get plenty of support here. It's great you found this forum.

My husband was diagnosed in 2020, suspected CLL since 2018. He will be 64 next week. Gets bloodwork every 6 months for now. So glad we found this forum full of people so selfless and knowledgeable when we were in shock too. It's priceless to have this type of support and sharing of information and experiences.

Prayers,

Cookie~

[Mwagner]

Welcome and your reaction is similar to mine and others on this board. I found the folks here caring and knowledgeable which really helped reduce my anxiety levels. I am fortunate to still be on W & W after 5 years as others have had to endure trying a variety of drugs. One thing that is clear. Love more, enjoy every day, and don’t let the small stuff get you down.

[Dynamite1976]

Breathe and read-you have found the best site for support and info.

[Pin57 in reply to Dynamite1976]

One of the best one sentence replies to a newbie I’ve read. Well done.

[Pin57]

Another welcome to this forum Wilcop, great choice to join. Many wise and supportive folks here.

My WBC measured this week at… 15.9 (just like you) and my Lymphocytes count just crossed the double digit mark at 10.2. Like AussieNeil said the later count is key one to watch. If yours is also somewhere like mine, guessing you’re a very early CLL stager. My CLL doc told me I’m at stage 0 , that’s rock bottom, n hoping you are rock bottom too … in a good way!

Cus as the many other replies note you might be on the Wait n Watch train for a long time … for me, almost 2 yrs since CLL dx, it’s been a good train to ride. Feeling fine and living life best I can.

Yeah it was a shocker to be dx with CLL and with the C-word thrown at me I wondered “how long I had to live?”. Learned much about that answer from my doc and this forum. Chances are really good you’ll live long.. and likely die with CLL not because of it. After my doc told me that, he said now go on and live life!

Doc also noted to eat a healthy diet, exercise regularly, and be sure to get all the recommended vaccines to help avoid getting infections.

So I’ll end my reply on my docs two simple words of wisdom… “live life” and Wilcop you can do it! This unique cancer IS beatable and it’s treatable “if or when” that time comes. 😀

[CycleWonder]

It is always a shock to receive the diagnosis of CLL but it can also explain some health issues you may have had in the recent past. For me it explained how quickly an oral abscess became a hospital stay and the swollen glands in my neck.

My first CLL specialist spurred me to get as many vaccines as I could fit in for shingles, pneumonia, and flu. Then she told me to exercise.

So our life now revolves around prioritizing exercise in our life. We’ve had a good time with that.

My absolute lymphocyte count was last measured at 284 and my hemoglobin is trending toward 10. Treatment may be coming for me soon. I am noticing I get breathless after going up a flight of stairs or walking up a steep hill.

I was diagnosed 5 years ago.

Don’t look at information online about survival rates. There has been so much progress in the last 5 years rendering those statistics obsolete.

[phd1114]

Hi Wilcop,

I know it's a completely shock when someone tells you that you have the Big C. It takes awhile to get over that initial shock. But, quite honestly, your WBC is not much above normal. I was diagnosed when my numbers were in the 100s. I know people that were diagnosed with WBC at your level and above, and their numbers eventually went back to normal with diet and exercise, and they've never needed treatment. Others, like me, it started growing a bit rapidly...but I also had some very stressful circumstances at home that I shortly eliminated. (Stress over the diagnosis, and other stresses in your life, are not helpful.) My oncologist did CTs and the fish panel to ensure I didn't have anything else going on that we needed to worry about.

After 3 years W&W, my WBC numbers were close to 700. All other numbers were starting to trend in the wrong direction as well...yet I felt perfectly fine. People are shocked when I tell them that number, and my oncologist has never let anyone go that high before treatment, but I was healthy, active, and had absolutely no other symptoms except a few minimally enlarged lymph nodes. I did choose to start treatment (a daily pill) and at first it was a little scary because the numbers got worse before they got better. But all of my numbers are headed back to normal range now, and I still feel great.

One thing I wish I had done early on is to change my diet, and see a functional medicine doctor. I now go to acupuncture once a week to maintain my health, but I wish I had started when I was W&W. The combination of Eastern and Western medicine can be amazing. Best of luck to you in your journey...and try to remember that WBC is just a number. It isn't the whole story.

[Adlucy]

Hello Wilcop

I totally understand what you are going through. I couldn't believe it when my doctor told me there was an abnormality with my blood and that I needed to have a test every three months. That was in 2019. I had a blood test as part of a Well Women Check.

The next shock was in 2020 to discover that I had mutations which meant it could progress more quickly.

I got over that when I was changed to annual appointments and now I am going to 6monthly.

This website is marvellous. Everybody is so helpful and empathetic.

If you feel well in yourself just keep going and leave your fretting until blood test time. I got really upset earlier this year because of my numbers but speaking to the consultant helped.

I think the hardest thing to accept initially was where did it come from as there was no familial history.

Good luck and enjoy your life.

[skipro]

Awe,

Such a stressful, trying time when first diagnosed. I ignored my results for 2 months, then repeated them in a month, then another month went by and I asked my oncology associate who ordered the definitive tests.

I was devastated and sick to my stomach at the results, but kept working and tried to stay busy to keep my mind off it.

Now after 11 years I've been through chemo that wasn't as bad as I had anticipated, then I've had a relapse and am about to start up again, with some trepidation.

But My experience has been to stay active with work and outdoor activities. I skied all through chemo and would just pull over into the trees to cough up my cookies. This was a lot better than laying around at home and using the bathroom for this.

Hiking, snowshoeing, skiing etc have kept me sane and hopeful and fit.

God bless you on this new journey.

Mike

MD and CLL patient