Newly Diagnosed Age 49: I’ve been recently... - CLL Support

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Newly Diagnosed Age 49

Nell2009
Nell2009

I’ve been recently diagnosed with CLL at age 49. Having read several posts that are suitably empathetic, I have no end of questions coupled with fear. I have a young family and the news hit me like a truck. Having always been extremely healthy and active - bulletproof was an internal dialogue. Ironically, it was found post an extreme 7 day marathon in Morocco. Right now, I’m pretty baffled on what to expect as follow up WBC’s have ticked up gradually having started at 17, 24 and now 29. Is this a pattern that has a time line to treatment ? Pick up any passing bugs from children and get regular’ hangover ‘ like feelings. Is this the new norm ?

Diet ? Alcohol consumption - none, some relaxed ? I still train most days - aside bug/ cold days.

Are there any obvious wins or measures I should be adopting/ avoiding ? I live a very active lifestyle and try to avoid ‘ opening the ‘CLL black box’ too often but struggle with the lack of roadmaps. I’d really appreciate any steer on all of the above 🙏🏻 Many thanks.

42 Replies
oldestnewest

It does feel like a truck hits us when hear that diagnosis.

You mentioned rising WBC...how long of a period of time were those 3 levels taken apart?

I can't see ur response on here but it showed up in e mail. So that is total of 9 months from 17- 29?

That is normal. Mine would go up

3-6 every 4 months for the first 5 years.

When it starts to double in short period of time, then it gets more serious. Node size, spleen size, lymphocytes, HGB etc all get analyzed. It isn't just your WBC. 💕

Nell2009
Nell2009 in reply to GMa27

Many thanks for taking the time to reply. Yes, your summary is spot on as that’s the current traction. Reassuring

Hi Nell2009,

I was diagnosed at 48, 6 years ago. I had 1 high school kid still at home and the others were in college. Once I got over the shock and saw a couple of really good CLL specialists. I lived my life completely normal. I worked, worked out, traveled, and saw my young nieces. My white blood cells continued to rise every time I went to the doctor. I just now over 6 years later started treatment in October.

I would definitely try and wash hands and stay away from sick people if you can. Get yourself shingles vaccine and pneumonia shots.

It will get easier. It takes some time. Try not to worry too much. They’re so many great treatments out now.

Take care,

Sheryl

Iris123
Iris123 in reply to Smac29

I couldn’t have said it better. ❤️

Nell2009
Nell2009 in reply to Smac29

Hi Sheryl. Thanks. Do you pick up infections, colds etc easily and does this become more so as the WBC ticks up? I’ve had the mentioned shots but are there any other dietary , supplements or holistic approaches that you’ve found have supported you ?

newyork8
newyork8 in reply to Nell2009

This is a disease of the immune system so good nutrition may be key. Get your Vit D levels above 50. I was diagnosed at 49 with 2 children. Now 10 years post diagnosis. I am unmutated 11q del. so a higher risk category. Treatments are great now. You win by putting this in the back of your mind. Think of this like a chronic disease...But get a true CLL physician not a general oncologist when time for treatment...if ever.

Smac29
Smac29 in reply to Nell2009

Hi Nell2009,

I have been very healthy and have not been sick. I’ve had a couple colds when I lived in the Midwest that may have lasted a little longer because of my CLL. Not sure. As my white blood cells went up I did not get sick. The one thing I did get early on was Shingles and then a second time last year. I did get the Shingrix vaccine. For me, I haven’t taken any supplements or limited my diet. I do exercise daily which I think helps with fatigue and some older age aches and pains. I really have lived a normal life before Covid. This wonderful site and all the people on it have been very helpful! I also found a CLL doctor and got a second opinion in the first year of diagnosis and again this year before I started treatment. The more I understood CLL and what to look for in my labs helped me a lot.

It does get easier.

Sheryl

Big_Dee
Big_Dee in reply to Nell2009

Hello Nell2009

I am un-mutated and now 13q normal after treatment. I had very aggressive CLL, went from 11K WBC at diagnose to 297K WBC in 14 months. I have not had a cold, flu or anything else in 3 years. I do how ever take precautions, like wash hands, use sanitizer and wear masks in hospital or public. Very similar to what everyone should be doing to protect oneself from CV-19. I would not take any supplements without first being tested for deficits and consult your CLL doctor. Best solution is eat healthy balanced diet and moderate exercise. If you feel up to training for marathons, go for it. Blessings

Neil,

An initial diagnosis is like a punch in the stomach with so many questions and unknown. It’s overwhelming how one day your cruising along through life and then you have this diagnosis which makes you think of your mortality front and center. Few things to note there is a lot of old and outdated information so don’t panic. Second, there Has been recent significant changes in treatment from chemo FCR to other treatments that seem more effective and less toxic. These treatments are evolving everyday. So don’t panic, educate yourself so you understand treatment options, changes in your health and you are your best advocate. If you live where you can be monitored by a cll specialist I would find someone you trust and can work with you. You will find for the most Part nothing changes initially and it may be years before you have any symptoms and need treatment. Find your balance and live your life.

Nell we all went through the shock of our diagnosis and we do get over it and move on. Here are some thoughts I put together about things I did not understand for a while and how perfectly normal that is:

healthunlocked.com/cllsuppo...

Nell2009
Nell2009 in reply to cajunjeff

Thanks. Good article , as are the supportive replies. Any thoughts on lifestyle - social , dietary restrictions etc as read quite a bit on claims of cutting meat and dairy to stabilise the WBC tick up ( US CLL site Patient Power - Andrew Schorr , seems knowledgeable etc ) I find the plant based food baffling as my consultants says there are no proven grounds on this ?

Should I remove alcohol or is a social beer ok ?

cajunjeff
cajunjeff in reply to Nell2009

Nell I am on a drug called ibrutinib for my Cll, it’s an oral pill a day. Now that it has my Cll under control, my life is the same as before my diagnosis.

I am not a believer in fad diets. While I was in pretty decent physical shape before my Cll diagnosis, I do exercise a lot more now and have improved my diet.

But I still eat gumbo, jambalaya and boudin and wash it down with as much beer, wine or bourbon as the mood strikes me.

You will find on sites like this many people on a quest to treat their Cll with diet changes like plant based diets, fasting and such. Thus far I have seen no real science to support such claims or any support for such diets by true Cll experts physicians, other than to say most all doctors agree exercise and diet should be part of our plan to live longer and healthier. That’s true for everyone, Cll or not.

Nell2009
Nell2009 in reply to cajunjeff

Spot on with a the frankness and common sense. Many thanks.

avzuclav
avzuclav in reply to Nell2009

I vote yes on social beer. Maybe lower quantity to cut down on hangover-like feelings.

Justasheet1
Justasheet1 in reply to avzuclav

Less beer? 😱

Fofzero
Fofzero in reply to cajunjeff

Hi Jeff, just read your thoughts about CLL, very helpful, thanks!

Diagnosed 16 years ago at age 66. Go for labs every 3 months, have never needed any sort of treatment. My WBC has ranged from 50-80. Have been asymptomatic for all those years

Nell2009
Nell2009 in reply to Stevevolo

Thanks Stevevolo. Has your immunity suffered and do you pick up infections easily ?

Stevevolo
Stevevolo in reply to Nell2009

No not really. The major change is that I bruise very easily. Since my CLL diagnosis 16 years ago I have had the flu twice but rarely get colds anymore

Nell - Cajunjeff's CLL for Dummies is gold! Another good basic resource is the CLL specific booklet available online at lls.org Start with the basics and start getting familiar with the vocabulary. Don't worry about what you don't understand or all of the treatments. You will have time to process all of that.

Your ALC (absolute lymphocyte count or lymph #, but ignore the percent) is a more accurate number to follow than the WBC as far as progression. Under 30,000 it is very normal for it to bounce around. You might want to have your IgG level checked the next time you have labs done, since you are catching so many passing germs. If it is very low and infections become a significant issue, IVIG (gamma globulin) infusions can make a difference.

The basic advice about diet is to eat a well balanced one. You will see people pushing extremes regarding diet and supplements. Sadly, sometimes that comes from close friends and family. I had to let go of a good friend who was questioning everything my doctor said and was pushing Noni Juice as a cure. Any supplement should be checked with your doctor, and as long as your diet is balanced don't deny yourself some dietary treats. Chocolate is even said to have medicinal properties. 😉 Most doctors won't expect you to give up all alcohol, but it's a good thing to ask your doctor about. We are all different, and other factors might play into your doctor's advice (e.g. medication interactions, kidney issues).

Plan on a very long run. I've been at this for 17 years, and there are people online who have reported a diagnosis 40+ years ago. You might want to indicate where you are in the world. This group is very international, and those nearest to you will be able to better give location specific advice.

Hi Nell2009, I was also diagnosed at age 49. That was 6 years ago and since then I have been on watch and wait. As others have said, I can honestly say that in the meantime life has gone on as normal for me. The difficult part is accepting that there is no rush to treat CLL, it is slow moving and in fact the longer you can go without treatment the better. Some people never need treatment. One note of caution though, CLL does impact your immune system, so take extra care to avoid the risk of Covid for example. I was not careful enough and I got Covid I September, and ended up being quite ill for almost two months, better now though. Best of luck to you.

My husband was diagnosed when he was 54 which was a shock as he had no symptoms. He then continued to work and life was completely normal. He had 6months of treatment in 2016 and is in remission.

jenny uk

Yes it is a shock and each of our CLL journeys are different. I was diagnosed at 52 and 8 years later I have achieved first goal is see both kids off to Uni: and I have not had CLL treatment yet nor is it near.

In all probability, it will be slow-moving and you will have lots of time to understand it. Ask us questions and stay off Dr Google who is clueless! Keep active and running!

Nell2009
Nell2009 in reply to Quarry

I’ve now learned the perils of Google ! Ta for taking time to share.

Sending you love and hugs. Getting a diagnosis of CLL can seem rather overwhelming. I was diagnosed nearly 3 years ago and felt exactly like you. I had FCR less than a year later. I am now in remission, feel fine and have come to terms with the situation. Hopefully you will have support from your oncologist, oncology nurse family and friends. You will have lots of questions, ask your professionals, I would recommend that you don't resort to Google unless you are going to trusted sources like Bloodwise, Macmillan, Leukaemia Care etc. On a positive note CLL treatments have improved so much recently. I wish you the best of luck in your journey, let us know how you get on. ❤❤

Nell2009
Nell2009 in reply to Floxxy

Thanks Floxxy. The community response is calming and lightens the load.

Diagnosed at 53, started treatment 18 mos later. My blood work was mostly good, but platelets were dropping and lymphocytes were trending toward doubling in 6 mos. RN would stress that they have patients with many times higher WBCs and lymphocytes than me. Dr said every visit that I may never need treatment.

Bc of the platelets dropping and increasing (but still not unseemly high )lymphocytes, they did a bone marrow biopsy and discovered that it was 90% CLL.

My labs still indicated stage 0, the biopsy indicated stage 4. The lab trends did lead to the biopsy, but I was also told after that the way mine presented, if it had been 40 years ago it likely would not have been found until I was quite sick.

Everyone has a different journey with CLL. And there are lots of variables with genetic markers, etc.

keep your vitamin d level high!

Hi Nell, I am a runner too and do my utmost to ignore CLL. I am 74, on watch and wait, and I ran a 10 mile hill race last October. I felt pretty awful afterwards and told my wife and friends that I will not run another race. Then, it struck me that I always felt awful, even 30 years earlier. I now keep the training going and feel pretty good considering my age. For we older CLL's, we need to worry more about weight and cardio-vascular fitness. We also need a reason to get out of bed each morning, and any motivation is good. Being older, my wife and I can shield and so I have not had any infections since my last flight back from Lanzerote. Getting infections may be more to do with meeting people/children and less to do with a compromised immune system. Lots of energy to you.

Nell2009
Nell2009 in reply to kablea

Thanks for taking the time and humour to share.

Nell, I see someone recommended you get a shingles vac, as you have a compromised immune system do not have the normal shingles vac, but Shingrix a 2 part vaccine given to we Cll patients. In the UK this is not widely available though is it appears to be so in the US.

I live in Wales (UK) and have acyclovir tablets at home prescribed by my GP so that in the event shingles strikes I can treat it straight away. Prescriptions only last 6 months hence the actual tablets.

Use (ALC) absolute lymphocytes count shown on your blood test, to measure any progression. You have joined a good community to support you as you become used to having this disorder.

Best wishes

Bubnojay

If you are in the UK (even if you are not, there is a lot of trusted and relevant information you can access on the site) go to cllsupport.org.uk and check out their patients handbook and webinars featuring CLL medical specialists.

All services from CLL Support are free and if you sign up to this patient led Charity you will receive periodic email news letters and invitations to future webinars and also conferences when they are re-established.

They also have a virtual under 60s club aimed at those individuals with CLL who are still engaged in their careers.

Hi Nell2009!

I was diagnosed at 47 with 3 children (6,8,13 at the time) and while I was NO marathon runner I worked out 4-6 days a week walking 3 miles or biking 5-8 miles or doing HIT workouts. And EVEN though my mother had CLL it literally overwhelmed me when I was diagnosed!! I usually eat well (I have kids and will never say always .. cookies & ice cream are too good sometimes - has!) & exercise & was “young” and just couldn’t understand it even though I knew about CLL I was scared to death! My WCC was 28 @ diagnosis & 9 mo ended up at 37 and will have counts done again in January so who knows where I’ll be —- BUT let me give you this bit of positive news — my mother has had CLL for 12yrs ... she’s still on W&W — even though her numbers are now in the upper 100’s she still is doing well and has only a slight spleen involvement and a few small lymph nodes she is still borderline with hemoglobin and platelets & they haven’t done any treatment. She had lived a very “normal” life other than being more cautious — she has taken weeks to travel across the US two different times, flown to Romania for missions and rides her tandem bike with her husband regularly for many miles at a time!! I have no major personal experience with CLL yet other than my past year after diagnosis but just know there is amazing treatment options as well as many people who go years without treatment and still “live” life!

Nell2009
Nell2009 in reply to Meamiaam10

Thanks for sharing a very similar experience. Your mothers progress is reassuring - in what is a ‘ wobbly world ‘! The people on here have definitely settled my thoughts over the last few days. I keep to myself so dealing with it at early stage is quite internalised. This forum is a release. I hope things stay stable for you both and very much - onwards !

Hi Nell, we are glad you have found our community. It is helpful to learn about our different journeys dealing with our common denominator, CLL.

I’ll share a bit about me. I was diagnosed at age 54 after a comprehensive physical exam to help me traverse menopause. My WBC was 11, which prompted a full blood profile. Over the next five years that number grew, step by step, to 32. The main affect on my life was repeatedly contracting bronchitis and taking long and long to recover. One bout went on for two months, at which time my doctor said I should not go back to teaching my beloved 5th graders. It was unbelievably stressful to continue to make daily lesson plans and to fret about my students. Leaving my work was a huge blow, but also a relief.

Putting the pandemic aside for a moment, one thing that helped me enormously was clear communication with my family and friends. We often entertain each other with some dinner parties and people sometimes cancel due to having a slight cold. Yes, it is disappointing but better safe than sorry. I wore masks on planes, buses, trains and taxis and wash my hands every time I come in from the yard or out to a store.

Now with the COVID-19 crisis, I pretty much stay home. Our only child lives an 11 hour drive away and so we are spending the American holiday Thanksgiving just my ourselves, my husband and me.

So Nell, come to our forum anytime to learn more and ask questions. Think of us each as a flying buttress to keep you up !

Sending support from northern lower Michigan. Carolyn

The first question is are you seeing a cll specialist. I started with non specialist and switched recently. He better educated me and help me understand my personal journey with cll. I have recieved alot of help on here also. I had to many worries and questions running through my head with non specialist. Take care

Nell2009
Nell2009 in reply to showdog

Yes I’ve used a professor in CLL type matters who is very logical and calming. Thanks for the reply and steer.

cllady01
cllady01Volunteer

Nell, welcome, and the following linked post is important for your points about catching colds easily. Colds in immune compromised CLL patients can lead to upper respiratory infections which can be difficult to get under control, so the vaccinations are very, very important to keep current.

healthunlocked.com/cllsuppo...

You are in good company here as you have already surmised from the responses. We have all been where you are with being in a sea of worry, wonder, and feeling we have no knowledge to help ourselves. We are all in this together as we learn and support as best we can. You will learn more as you go.

Also, I repeat what others have said, look at your Absolute Lymphocyte Count and not WBC for indications of your stability--the blood levels bounce up and down from appt. to appt.

Keep us apprised of your situation.

Last edited by CLLady--Sorry Nell2009 . I need to up my font size--I addressed you as Neil.

Hi Nell,

I was diagnosed last month with CLL, also at the age of 49.... You are right on when you say the "news hit me like a truck". I feel like I am still trying to get my feet back under me, while trying to maintain some normalcy for myself and my family. Since my diagnosis I have become keenly aware of my body, all the aches and pains, bumps, lumps, and bruises....which probably have nothing to do with CLL, but what if.... In reality, the "watch and wait" stage is really good news, but wow, this is all a lot to absorb.

I am also in the same mind set of you as to what are the obvious wins or measures I should be adopting/ avoiding...still searching...

Knowledge is power! The more knowledgeable we are about our new challenge the more we will be empowered and able to thrive. A couple weeks ago I read an article that said, "Recent data suggests that the overwhelming majority of newly diagnosed early stage asymptomatic CLL patients will have a normal life expectancy with or without treatment". I hold onto this and repeat it to myself over and over, when my mind starts to spin and worry. The support and education from this group has been tremendously helpful for me to begin to put my road-map together, while also providing me with oodles of HOPE!

We Got This!!

Dear Nell, my story with CLL started at the age of 42 , 2 years after giving a birth with chest infections and fatigue. I was under watch and wait until now. First 5 years I was thinking about dying only but was very active professionally. My point is that until your results are really bad ( high leucocytosis, low platelet and Hb, enlarged spleen, lymph nodes etc) you will be under active surveillance. I think that you need to care for your fear - meditation, acupuncture etc. The stress from diagnosis makes your life completely emotional stuck. So solve your stress, emotional problems (if you have), trauma from the past and live your live like this is the last day of your life. Do things that you love. Think about your diet ( organic food, a lot of veggies, avoid sugar etc). You might need treatment after 10-20 years or sooner. You never know. But would be sad to live thinking all the time about CLL. I started treatment 2 weeks ago and Ibrutinib is very promising! So good luck and keep well ❤️

Thank you for the reply Yes -anxiety and stress colour the picture and addressing the mental challenge is pretty much the crux of this little ‘gift’ ! All of this feedback is an enabler to box the CLL and make sense of it so as to move on and focus on my family and all the very positive things I have. Words are easier than actions though !

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