I found out 3 weeks ago that I have CLL. I’m 39 and it was picked up in my bloods that I was having done due to experiencing chronic urticaria. It’s been a huge shock.
Initially the haematologist said they wouldn’t even be looking at treatment/further tests right now if I wasn’t having the urticaria but at a follow up appointment today a different haematologist said it was likely I’ll have to start treatment sooner rather than later as my WBC has increased quickly since April (from 10 in April to 70 something now).
They did a bone marrow biopsy last week (which they weren’t even sure if they should do based on the fact I have no other symptoms and my general health is good) and they’re now chasing the results of that this week to give them more information.
I guess I just feel thrown as I was preparing myself to be W&W for a while.
I’m seeing dermatology on the 12th July to start a new treatment for the urticaria as the high dose of steroids that I’m on (now 40mg a day but down from 50mg a day two weeks ago) isn’t working.
Would anyone know if the urticaria and/or steroids might be having an impact on my WBC count?
Sorry to ramble, my head just feels a bit overwhelmed.
Grateful for any advice xx
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Macymoomoo1983
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Hello Macy, sorry about your cll diagnosis. I am not a doctor but I can give you a non expert guess of an answer.
Yes, steroids can definitely bump up your wbc. I would expert your doctor will want to repeat your labs after you stop steroids to get a more true number.
We haver several types of white blood cells. With cll, its the lymphocytes that are cancerous and raise our wbc above normal levels. You should be able to look at your labs to see the component parts of your wbc. If your neutrophils have spiked, that would more likely be caused by the steroids. If its only your lymphocytes that have spiked, that might make cll the more likely cause.
It should be easy enough to find out, get some labs done after the steroids are flushed out of your system. I would think if your lymphocytes stay high, cll is the probable culprit.
Here is a post I did with info I thought might be helpful to newly diagnosed folks which I hope is helpful to you if you have time to read it:
Welcome to our community! I'm sorry that you have such trying circumstances so early after your CLL diagnosis, but be reassured that you've found a very supportive community.
Steroids can certainly increase your WBC, of which your haematologist should be aware. Your bone marrow biopsy results should help determine to what extent your WBC changes are due to your CLL. Tests can also be done on your blood to determine how much your WBC is made up of monoclonal CLL cells.
CLL treatment options in the UK have dramatically improved quite recently, so if you do need treatment for your CLL, you'll have access to some of the best treatments available in the world.
That’s really good to know, thank you so much. It’s just such an unsettling time waiting to find out more information and running through all the possible scenarios in your head.
Hello,You are in a great place with this forum Macymoomoo1983.
My husband was diagnosed in 2020, watch & wait. I have anxiety so I identified with your "many scenarios" comment. Mindfulness helps me with our medical/life occurences in general. But, this forum helps me in a priceless way as well!!!!
Virtual huge hug while you navigate your way through testing and understanding what your body may need.
Thank you so much. It really helps to know there’s people who understand how I feel. I’m going to try mindfulness too as a friend recommended this to me.
Welcome to this wonderful group. You will learn a lot on this site and I believe a number of members have much greater understanding of CLL than my family doctor (even though she is pretty awesome).
I was having a lot of episodes of hives on my arms, legs, pretty much everywhere that seemed to come out of nowhere. It went on for months, Once I started treatment (acalabrutinib and venetoclax), the hives disappeared. I finished treatment Sept 2020 and the hives have not returned. Until I read your post, I had forgotten how uncomfortable hives can be. So I don’t have any advice re: blood counts, but I wanted you to know that treatment, when needed, can make you feel better pretty quickly (it took care of the hives and the itch for me),
I wish you the best. Please keep us posted on your findings.
Thank you so much for replying. It just makes you feel better knowing other people understand how you feel. It’s a strange situation as apart from the hives I feel really good. I’m really glad to hear that treatment helped this for you and I hope it will help me too if I have to have it
Macymoomoo1983, so glad you joined this forum. Ask your questions, there are no silly questions here. Your doctors sound like they are on top of this. My best wishes to you. I'm 73, in W&W, last WBC 102. I feel good and am very active. 🙂 Sandra
Thank you so much for your kind words and it’s good to hear that it sounds like my doctors are doing the right things too. I am really glad I joined the forum tonight as I was feeling so freaked out all day after my appointment
Hi, I was diagnosed age 43 and I am 64 now. In 2001 things were different and treatments have changed beyond belief. More drugs are being developed too.I remember how I felt when I was diagnosed. It was also found in a blood test for something else. This waiting is awful and it would be good if things settle down and you know what will happen next.
Although this is an awful diagnosis, it is possible to live a normal life and there will be a cure in time.
It wont seem like it now but you will feel calmer and this site is here to help.
Thank you Anne, that’s so nice to hear and I’m really hoping to feel calmer in time. I’m so glad I’ve joined this forum as all your lovely comments have made me feel a bit better already
Hello and welcome 🤗 You are very fortunate to have found this site… there are some very kind, supportive and knowledgeable people here. Since my husband was diagnosed in 2013, I have learned more here than anywhere else; there is always someone to answer your questions and everyone is very kind and understanding.
I’m sorry you’ve had this diagnosis, but the treatment now is very doable and successful.
Hi Macy. Welcome to the family! You will come to terms with your diagnosis and the more you learn about it, the better you'll be able to collaborate with your haematologist; make sure you are with a CLL specialist, as its a complicated and heterogeneous disease. If you are given the opportunity to chat with a CLL clinical nurse specialist (CNS) you will benefit too. There are helplines on the UK leukaemia websites too.
The webinars that CLL Support (based in Chippenham) have on the website offer a lot of information, if you have time to watch them.
There are many of us here in the 60/70 years age group but you're definitely not alone as a younger member.
I'm in remission, having recently finished a year of treatment with Venetoclax and Obinutuzumab.
Best wishes - let us know how you get on with the dermatologist.
Thank you so much Linda. I’m definitely asking about a CLL specialist at my next appointment (it’s on my long list of questions). I’m really glad you are in remission too. How have you found the treatment?
Well, the V&O treatment is very busy initially, with lots of infusions and blood tests, but soon settles to simply swallowing the Venetoclax torpedoes every day! Personally, I sailed through it, despite having lots of co-morbidities which make me a bit frail. It's likely to be years before I need further treatment now. Frequent infections are my biggest problem and sadly this is a problem for all of us with CLL.
Welcome Macy - sorry to read about your diagnosis. I was recently diagnosed (aged 59) and put straight onto acalabrutinib after a spell in hospital. Alas, that does happen to a percentage of us, but as Neil says the ever-improving quality of treatment is a blessing and cause for hope that with a fair wind and a few precautions we can live long and well with the disease. All good wishes.
Definitely helping. Bloods improving. I still have a bit of rib inflammation, but once that subsides I'll be able to restart some gentle jogging, cycling etc. Bon chance!
Firstly welcome to the club which none us would choose to join. However, we are all here for each other, good or bad. I am almost 70, diagnosed in 2018, I was watch and wait for three years before starting treatment last August. My white blood count had started to climb and in August was 250, I was given Acalabrutinib and within weeks the numbers were falling, and at the last count was down to 11.7Would also suggest you join the 'under 60s' club with CLL support association.
Thank you so much. That’s great to hear your numbers improved so brilliantly. I’m hoping it will be the same for me if I do start treatment. Do you know where I can find the under 60’s with CLL club?
Hi Macymoomoo1983 - welcome to this group. It's an amazing resource for learning, support and understanding as we try to navigate our lives to a new normal. I was diagnosed at 40, a couple of years ago.
I remember someone in this forum saying that it took them about two years to normalise/ get over the shock of their diagnosis. At the time I thought that that was a little slow... Suffice it to say, they were a lot more self aware than me
Take your time and be kind to yourself. Also find out about vaccinations when you speak to your haematologist.
Hi and welcome. Nothing to add to the already great advice. Here you will find lots of support and good information. There is an option to lock your post to only community members which may bring you more responses to future posts (otherwise it can easily found on the internet search). A bit of a dilemma really as the internet is the way some people, find our group. No questions to big, small or seemingly silly. It’s been a Tremendous help to me.
Hi Macymoomoo and welcome. There are so many super informed people here to answer questions. I would second Basil1’s advice to look into vaccinations (not just Covid, but pneumonia, shingles etc.) and let your dermatologist know about the CLL diagnosis. In terms of the emotional impact of the diagnosis, it may have been quite startling to be diagnosed with a condition that is more often seen in 60+ folks. Over time, and with support, the emotional roller coaster less distressing, and you get a bit more used to the new way of “riding” through life 🙂
Thank you so much. It has been a real shock and I’m definitely struggling with the anxiety this week. Waiting for the bone marrow biopsy results is the main reason for this I think.
Hives generally resolve themselves unless you are allergic to some food or clothing material or washing detergents. Yes, steroids can impact WBC, but the oncologist or hematologist and pharmacist are your best guides there. CLL does sneak up on people. I found out I had it after completing a 400 mile bicycle ride over eight days. A week later I felt a drain of energy and weakness unlike anything I had ever experience. My WBC jumped from a normal 10,000 to over 80,000 in four months along with other indicators. Now three years later we seem to be managing but nver with the same energy, breathing or stamina. I am learning to eat better, exercise as much as I can each day, and keep a good outlook. Things could be much worse. Take good care and good luck. Thank you for sharing. Michael
Thank you so much for replying. I’m glad to hear your numbers improved with the treatment and you’re managing better now too. I’m actually feeling really good health wise (apart from the hives) which I’m really grateful for but it also kind of makes it even harder to get my head around because I feel well.
Most of us were diagnosed just like you, out of nowhere, during a routine blood test totally unrelated. A lot of us felt fine at the time of diagnosis, very healthy, living very active lives. It makes it really hard to get your head around...It's very good that you are still feeling well❤
I was also diagnosed at 39 and needed treatment within 6 months and again 11 years later. I'm now 67 and my current remission has held since 2007. This has all been achieved with old fashioned chemotherapy so with all the new treatments you should be looking at a long and near normal lifespan.
Thank you so much for your message. That’s so good to hear and I’m really glad you’re doing well. The treatments do sound like they are really effective. I’m just trying to stay as calm as I can until I get my bone marrow biopsy results and further blood results but I am finding it hard the last few days.
I think that as time goes by, you will realise how lucky you are to have found this forum.
I was diagnosed at 39 as well, it will be 3 years on July 5th. A strange anniversary, right🙂
The initial shock is very traumatic and I'm sorry you had to go through it as well. It's like living one's worst nightmare. It still feels surreal to me, even after 3 years.
They say go and live your life and it's very hard at times and sometimes nearly impossible...but if there's one thing I figured out, it's that worrying about your future doesn't make the present any better and it certainly doesn't effect the course your CLL will go. I also learnt that when I felt rubbish about my CLL in the past, I was actually not that bad at that point and I was just worrying myself and stressing myself about things that were not worth it when I look at it retrospectively.
You really need to find a good CLL specialist, if your specialist is not worried, you don't have to be either. You can be seen by your local haematologist and see your CLL specialist less frequently if you don't have anyone locally but it's very important. If you let people on here know where about you live, there will be someone more knowledgeable than me who will suggest your nearest specialists to choose from. All you need to do is to ask your GP to refer you to them. It's important especially if you feel like you might need to start treatment soon. It will also provide continuity and you need someone who you can trust and you built a certain relationship with.
We are all here. Always willing to offer advice and all of us understand just how difficult and very unfair this is.
Thank you so much for your thoughtful words and understanding. Everyone has been so kind. Its definitely on my list to ask about the specialist too as I would feel better knowing I was in touch with someone who was fully up to date with treatments and everything else.
Macymoomoo1983, you'll probably read it from a lot of people here:You'll get hearty support from the whole CLL community!We've all been swept up in the emotion of this initial moment(me too just recently).
It will take you some time to get the emotions under control.
Talk to as many people as possible, it helps.
I have personally seen how compassionate people are here.
There are people here from all over the world and they are all the same with one thing: We will help you with anything we can!
Hi there. A very warm welcome, you’ve come to a wonderfully supportive place. I cannot comment on your specific question, but I wanted to reach out to you. I’m 44, I have a 4.5 yr old daughter and a 16 month old son. I launched straight into treatment following my diagnosis. Reason being, my Hb was so diabolical.
If you need to enter treatment with no W&W, then please don’t be scared. It’s been the best thing for me thus far. I feel so much better since starting treatment.
It sounds flippant for me to say please don’t be scared of treatment. I was a total wreck the day of my first treatment. Honestly though, to date everything has gone well and I feel great.
Every now and then, I get a ‘down’ day where I feel gloomy about having CLL. I come here to this group and the support and love makes me feel better.
Thank you so much Emma. Gosh it must be so hard to have two young children and deal with this too! I hope you are doing okay. That’s so great that the treatment has made you feel a lot better. How long have you been having it?
I’m going to find out next week if ill be starting straight away but I’m going to stay positive about it either way as I know the doctors will do the right thing for me and because I’ve heard such good things about the treatments too.
I don’t have any children yet but we were planning to have 1 in the next year or so which means I’ll have to look at freezing eggs etc before any treatment starts so another thing to get my head around.
Thank you so much for your kind message. It really does mean a lot xx
Honestly, it’s going pretty well. My son is obviously too young to know anything, my daughter….she’s a very smart girl. I bought a book called ‘how do you care for a very sick bear’. It’s a great book to open conversation about ‘mummy’s’ poorliness. Seriously though, a waste of time for us….my beautiful girl still wants me to do obstacle courses, and set up a camp and do baking. Low Hb and the fatigue does not feature in my daughter’s world. And nor should it….I press on and do my best for her and her brother.
A very hard thing for me was being forced to stop breastfeeding my son. I was due to commence treatment and was forced to wean him before either of us was ready. I shed some tears over that, when you become a mummy, you’ll know why I’m saying that.
I think freezing eggs is a good insurance policy. I have no idea as to the treatment impact on ones fertility. What I would say though is if you are planning to have a baby, then discuss this with your consultant. Pregnancy can take its toll on our bodies. I have no idea if post treatment you need to give your body recovery time. A discussion with your consultant I think.
It must be so tough for you in so many different ways but it sounds like you’re doing a fabulous job with getting through it 💜 I will definitely speak to my consultant about it before anything happens (treatment or baby wise), thank you for the advice.
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