CLL Diagnosis in 30s / CLL and Pregnancy

Hi, I was diagnosed with CLL this week, 3 months after giving birth to my baby boy. MBL was picked up when I was pregnant and my consultant didn't expect things would progress to CLL so quickly (if at all). It still all feels very raw, upsetting and terrifying, particularly as a new mum. I turned 36 a few weeks ago and have been told I'm a bit of an anomaly due to my age and also there isn't a full understanding of how pregnancy could have impacted on my lymphocyte levels and whether these might come down this far after giving birth.

I wonder whether anyone was diagnosed with CLL in their 30s or 40s and hasn't yet needed treatment? I read a research article that indicated younger people when diagnosed may be more likely to have more aggressive forms of CLL. I hope this isn't the case.

I don't suppose there is anyone out there who has been pregnant with CLL also?

Suzanna

48 Replies

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  • Ah Suzejc. Glad you've done your own post now. It reaches more people.

    Peggy

  • Hello and welcome to this forum. I am 46 and was just diagnosed in October 2016. After requesting old blood tests, I found my first abnormal lymphocyte count was in 2011. So technically, I very well could have been diagnosed 5 1/2 years ago. My ALC now is only 16.5, so my CLL is very slow so far. I got a a lot of testing done and found out I have favorable markers (13q and mutated) and a couple questionable ones that we are monitoring. My best advice to you is to get a specialist who deals with this disease on a daily basis. New treatments are coming out all the time and IF you ever need treatment, you want someone who knows exactly what you need. Second bit of advice, don't look at Google statistics...things have changed dramatically and will keep changing for the better. Don't be afraid to come here to ask any question you might have!

  • Thank you for your response. I found out the consultant I'm seeing specialises in lymphoma and although this is very similar I've requested to see one of the CLL specialists at my next appointment instead.

  • Welcome to the group. I am not the person who can answer your questions but hopefully within a short time you will find out some specifics from other members. My understanding is CLL is not worse because of one's age but whether you have certain mutations or not, the length of your telomeres, and your Tp53 gene status among other things. Try and listen to the best videos and information and become knowledgeable about the disease before worrying. We all react to the diagnosis and it takes time to integrate the info. Baq724 gave u some good advice about getting a good specialist. you have a baby to look after so try not to worry til you have to and with CLL you may not have to worry for a long while if ever.

  • Thank you. I spoke to my specialist nurse today and she confirmed they haven't found any evidence that cll can be more aggressive if diagnosed earlier and that it's being picked up earlier now due to advanced blood tests. I've now requested to see a CLL specialist at my next appointment.

  • Hi. I was diagnosed at 36 too! Also told this was very rare but it didn't make me feel any better. 12 years on and I am still on W&W. A slowly rising wbc but nothing dramatic. Still working full time as a secondary school deputy head.

    Good luck with your little one! Keep up the hope as you will have a long amazing time with motherhood. My son was 5 when I was dignosed. His energy and joy he brings everyday usually knocks the CLL to the background. Your little one will offer the same distraction

    You will have time when you feel down and overwhelme,well I did and sometimes still feel gloomy. But you need to take each day at a time at the moment and focus on your little one

    Wishing you all the best

    Nessalou

  • Your post has made me feel a lot more positive, thank you. My little boy has made me smile so much this week and I forced myself to go out to a baby yoga group for him and the change of scenery helped me. I think focusing on him is going to help. Having said that my biggest worry is not being able to be there for him, but hope that won't be the case. I have to remember that my consultant said I may never need treatment and focus on that.

  • Hello just wondering how you're doing what stage of cll do you have?

  • Hi again, I'm doing well so far - getting on with life and having 6 monthly check-ups. I'm still at the very early stages - my blood counts were picked up by chance, even though there has been a clear increase in my white blood count since 2012. They only went over the threshold of 5,000 more recently though. I didn't have any symptoms but now keep getting enlarged lymph nodes every now and then- these seem to keep going away again though and hope they continue to do so as I've had some come up more recently.

  • Hi Suzanna

    Im so sorry to hear this. What a blow at what should be the happiest time of your life.

    You are young but my understanding is IF you ever need treating being young is on your side as you will be able to tolerate medication better.

    This is a VERY treatable condition. Don't get too hung up on information on the internet. I made that mistake when my husband was diagnosed (46). It is mainly outdated now as so much progress has been made.

    You have done well finding this site. Everyone here will be able to guide you through.

    Try and enjoy your baby for now as you never get this time back.

    Take care of yourself. We are all here for you

    Maria xxx

  • Thank you Maria. I hope your husband is doing well xxx

  • Hi I was diagnosed at the age of 18, needed treatment after 3-4years, I had bone marrow transplant because my cll became very aggressive, have been free of cancer for 8 months now.

  • Thank you for your reply. I'm sorry to hear you were diagnosed so young and have needed treatment early on. Congratulations on your successful bone marrow transplant. I hope things continue to go well for you now .

  • Like everyone else, I'm sorry to hear of your diagnosis. There are some things you can do to help yourself - as per baq724's advice, get a good CLL specialist who will be completely up to date with diagnostic tests and treatments. The second would be to really look after yourself - so lose weight and get fit if you need to. You'll feel better for it, be in a better position to cope with whatever comes your way and you'll feel like you've taken back a bit of control in your life. I wish you well, enjoy your little one and keep us up to date as we'll be thinking of you.

  • Thank you. I've now requested to see a CLL specialist at my next appointment. I actually teach Zumba and taught up to 6 months pregnant and then swam until giving birth so I'm slowly building my fitness back up and have been told that can help. I've also read that diet can have a positive impact- cutting out caffine and dairy and taking green tea extract. My consultant doesn't believe a change in diet will help but I figured it's not going to do me any harm to trial it for 6 months and see what happens. I'm a Coeliac and sensitive to cow's milk protein anyway so I'm feeling positive that it will help. We'll see! Thank you so much

  • Hello and congrats on the baby! I was diagnosed at 49 about 6 years ago and have not been treated yet and I have 11q and am "unmutated". Only until recently have I begun to feel worse though my lymph nodes and spleen and liver enlarged very eary on. I did take nutritional supplements for whatever its worth. I had a newborn and 5 yr old when diagnosed so I appreciate the anxiety produced over the worry about the children. My faith in science and knowing that they are making tremendous strides all over thr world againsf this disease has kept me hopeful. My best wishes and keep us posted and enjoy your baby!

  • Thank you for your congratulations! He's a little cutie - we love him so much. Yes, I've never felt worry like the worry of something happening to me whilst my little boy is a child. Three days on since my appointment and I'm still an emotional wreck at times but I've been getting out, doing things and have times where I'm feeling so much more positive about it al so hopefully it will all get better. Every person I've spoken to has been so positive about the new treatment too which is reassuring. What nutritional supplements are you taking? I'm going to try gree tea extract, no dairy and more vitamin D for six months. I've heard about all of these things. My consultant doesn't think diet impacts but I think alternative therapies do work for some people and it can't do any harm! Best wishes too xx

  • I do believe supplements can be beneficial. I've taken many supplemts among them vit d green tea aspirin curcumin bilberry etc. I have no proof they helped but according to one doc I should have needed treatment some time ago. We are all so different...perhaps these supplements have helped with other issues other than CLL. I'll never know but at least i feel as though Im doing something proactive.

  • Just a question out of curiosity, did you have any pregnancy related conditions when you were pregnant with your littlest child (before diagnosis)? I was diagnosed with obstetric cholestasis and have read this happened to someone else.

  • Hi I had this condition with my baby too and think I might have cll but haven't been officially diagnosed

  • Did you only develop cholestasis with your first baby?

  • Suzanna I just recently joined this forum as well and was just recently diagnosed this past June at 35 years old with either CLL or marginal zone Non Hodgkins Lymphoma. They are not exactly sure which yet as it shows genetic markers that are similar to both types. I have a five year old and three year old boys. It felt like my world was caving in around me at first, but after you digest the information and find helpful forums like this with people going through what we are you realize that it will not slow you down and you will be able to enjoy life for many years to come and may not need treatment for a long time, if at all. It can be hard at times with the what ifs and unknowns, but what works for me is to spend as much good time with my family as I can and try to reduce stress. I am on the watch and wait protocol. You will find stories of people going many years without needing treatment. I also read some of the articles you mention about those under 40 progressing much quicker with CLL, however do not let those articles upset you. I agree with others that have commented on this that many of those articles are out dated and I found that there is disagreement amongst the research professionals with whether that is even accurate. Your follow ups will include blood work where they will be monitoring your levels and watching lymphocyte doubling times, etc.

    Enjoy each moment with your little one. Wishing you all the best!

  • Thank you for your post. My specialist nurse said she's not aware of there being any difference in speed of needing treatment or how aggressive CLL is between people of different ages at diagnosis. I will talk to my consultant about this also but it is positive. She said it's highly likely I couyhave reached the age of 60 without knowing about it if I hadn't had a recent blood test. I'm going to try to avoid research articles. However it's very random that someone has sent me a link about a lady who was diagnosed with CLL at 36 whilst pregnant and she developed the same pregnancy related liver condition as me and also was a Coeliac (which is an auto immune condition). Not sure whether that's a coincidence or there's a link the specialists don't know about yet. Take care. I hope everything goes well for you xx

  • Yes the good news is that for young people like us, the longer we can get without needing any treatment, the more likely it will be that there will be more and newer and better treatment options and possibly even a cure. Once I got over the hump and the feelings of disbelief, I find that I am making wiser decisions about health and well being than I would have if I did not have this diagnosis. Use it as motivation. I find that it makes me look at life in a more positive way too and am better able to stop and notice and appreciate moments in life all around.

  • Hi Suzanna,

    I was diagnosed at the age of 45 and was told that was young. More and more I am seeing people at a younger age being diagnosed. I have been on wait and watch for the last five years. My counts can go up and down, the nodes on my neck sometime get large and I do feel tired most days. Coping with CLL can be difficult because of the waiting. I do not know if pregnancy has an effect or not and most people that I have spoken to are not in their child bearing years. Hang in there and take one day at a time. Ask your doctor lots of questions. I live in Canada and have a wonderful specialist and know I can ask her anything. It can be difficult but try to focus on this beautiful baby boy of yours. What I have learned is that we all may pass of old age before the CLL gets us! I struggle everyday thinking....will I be here for my daughter's graduation...will I see my grand-daughter grow up...how many more Christmas celebrations will I see. I can drive myself crazy some days and miss out on living because I spend so much time on the computer researching, wondering if I need treatment because my WBC count is 105 and nothing is being done. This sight has helped me put lots of things into perspective. This is the first time I have even written anything...usually I read posts and do research. Your post touched me. I want you to know I will be thinking of you and hope that you find the answers you are looking for. In the mean time "wait and watch"...I hate that term by the way! It is more like "wait and worry" All I can say is don't do what I did and obsess on the CLL. One appointment at a time! You may get to a point where you only have to see your doctor once a year like me! Best Wishes and thank-you for the post!

    Michelle

  • Thank you Michelle for taking the time to reply, particularly when it's not something you normally would do. You are right, my specialist nurse said it's being picked up earlier due to more specialised blood tests (although I'm sure most of us would prefer not to know about it!) and many people never need treatment. I totally understand that all the what if and will I questions make things unbearable to cope with but I'm working on positive distractions and hope I am able to switch off from the worries. As people say worrying doesn't change a thing and is often worry over nothing, so I need to keep that in mind and focus on all the positives. Best wishes to you too.

  • Hi Suzanna

    Sorry you had to join our group. My wife was dx 5 years ago aged 39 . Four years earlier she gave birth to our fourth child and at this time she had a troublesome lymphnode under her arm which we now know was connected to cll but dx came a few years later.

    Life now is good with the help of ibrutinib and we try to live as normal as possible.

    Wishing you all the best

    Michael

  • Hi Michael, thank you for your message. I'm sorry to hear your wife has encountered symptoms. I hope everything is going well with her treatment and wish you and your family well.

  • Hi Suzanna, gosh you poor thing what a traumatic time for you. I was diagnosed age 37 when my second son was 3, 2 years ago, I had had CLL since he was 1, I have wondered whether pregnancy had any effect and have been told no.. Who knows. I too have a predicting autoimmune disease (thyroid) and I have been told too that it's unusual to be diagnosed in my 30s and that potentially I could be more likely to need treatment as I am so young etc. However I went for a second opinion to a doctor in Paris (I am in Ireland) who told me that even though I am very young to have CLL, I could still go through life never needing treatment. Hopefully we will both be in this category.

    I can write more another day but for now wanted to write something as soon as I saw your post to let you know I am thinking of you. Having a baby is a roller coaster in my experience as is a CLL diagnosis - both together must seem completely unreal. You are in my thoughts and I look forward to staying in touch here. Know that the shock and pain does become more bearable as time goes on and life is great again (with bad days too every now and again but mostly good) and your precious new bundle will I know bring you joy when you feel sad. Bet he is gorgeous!

    We are all here to support - chat whenever you need to! I've found this forum a massive help.

    Oh and I find diet really helps, contrary to what my doctor said - I recommend you visit a functional health doctor who can advise on what exactly your body needs, in terms of diet and supplements, we are all different.

    I can relate to your worry of not being there for your son, that remains my biggest fear - not being here or not being fit and well to play with my little boys - but as time goes by I'm realising it's much more likely that I (and you too I hope) will be fit and well for a very long time to come.

    Bye for now, sending you love and hugs (and one for your precious newborn, congratulations!)

    Firefly x

  • Thank you for your message. The doctor in Paris's opinion is very reassuring. It's things like that I need to focus on.

    Out of interest, were you diagnosed with any pregnancy related conditions when you were pregnant with your youngest? Although my consultant says otherwise I find it hard to believe there isn't some kind of link between autoimmune diseases and CLL, particularly when so many people with CLL seem to have an auto immune condition. I agree with you that I think diet is also a factor. Since I've been a coeliac Ive not been good with cow's milk protein and so I'm going to cut it out completely for 6 months to see if it makes any difference. I'd never heard of functional health doctors before. How did you find yours? It sounds worth pursuing.

    Thank you for your post, advice and wishes. I wish you the very best back x

  • Hi! Well I had hyperemesis for both of my pregnancies which was hideous! I have heard a view that CLL is an autoimmune condition, though I know my haematologist does not share that view. But it sounds right to me - I'm no doctor though!

    I found my functional medicine doc by googling to find one near me. She is amazing.

    Good luck and stay in touch!

    Xx

  • Thank you! I'll have a look for a functional medicine doctor near me. Good luck too and speak soon! Xx

  • CLL is not an auto-immune condition. It is primarily a cancer of the adaptive immune system, specifically our B-lymphocytes, which normally make antibodies. en.wikipedia.org/wiki/Adapt...

    That said, CLL can disrupt the normal process by which lymphocytes that go through the IGHV gene mutation process so that those that develop a specific antibody that can cause our immune system to attack our body cells are not destroyed. Hence with CLL, we are more susceptible to auto-immune conditions, primarily against blood cell types. So for some of us, our anaemia, thrombocytopenia (low platelets) or neutropenia can be caused by lymphocytes making antibodies against these blood cells, so that our immune system destroys them.

    Incidentally , this is why quite a few treatments used for CLL are also used to successfully treat auto-immune illnesses like Multiple Sclerosis. Reducing the number of B-lymphocytes in such auto-immune patients reduces the severity of the condition - but at the cost of a lowered immune system, something we also experience with treatment for the same reason. There's still no way to selectively kill CLL cells and leave healthy B-lymphocytes untouched.

    Neil

  • Suzejc,

    I was diagnosed in November 2015at age 38; 4 days before my son turned 3. I suspect that I had it before I was pregnant because I remember blood tests that showed elevated white cells but my doctor always shrugged it off as my body fighting a virus or infection.

    I see a CLL specialist and also have a local hematologist whom I trust. I see my local hematologist about every four months and see my specialist once per year. I've had all of the FISH testing and mutation test and everything points to my flavor of CLL taking an indolent course.

    You have gotten some great advice already so I can't add much except to try and not let this run your life or fill your days with worry. It has taken me a long time to follow that advice and some days I still struggle but it does get better :)

    All the best to you!

    Kelly

  • Hi Kelly, thank you for your message. I just read your profile and one of the first things I said to my consultant in the blur of receiving the news is I would like to have more children. His response was you should have more children and said we should discuss it at my next appointment. Since coming away I have all the same questions and fears as you. I'm requesting to see a CLL specialist at my next appointment to ask him all the questions I have. I've also asked for him to make contact with any other CLL specialists in the UK who have experience of CLL and pregnancy. My consultant's view is that lymphocytes naturally increase during pregnancy and should come back down. Please keep in touch and let me know what you decide to do and how you get on. Best wishes x

  • I was just diagnosed this month too. I'm told that I've had it for "years and years". I'm in my 40s so I take that to mean I must have had it in my 30s. Have your markers returned?

  • Hi, I'm so sorry you have been diagnosed. Thankfully I don't have any symptoms. In terms of detailed blood markers my consultant doesn't normally check for these at this stage as they can change over time. That's what I've been informed anyway. I hope you're managing to come to terms with the shock and continue your normal life.

  • Most importantly......Congratulations on your baby! I was diagnosed in my 20's when my daughter was 18 months. My first thought at diagnosis was of her. I had no complications or anomalies throughout my pregnancy. 2017 is my ten year diagnosis anniversary and I am desperate to add to my family. My daughter asks for a sibling on a weekly basis but I have just been too frightened with the lack of information out there on CLL & pregnancy. I spoke to my consultant and he says go for it. My counts are stable, I'm relatively healthy, and he's saying it's now or never 😃

    I wish you the best of health and all the very best for you and your wee bundle ❤️❤️

  • Thank you for your reply and sorry for the delayed response. Thank you for the baby congratulations - he's the best thing ever! :) that's fantastic that you're still on watch and wait after 10 years and that your consultant is positive about you extending your family. Are your lymphocyte levels very low? Please let me know what you decide to do and how you get on. I wish you the very best 💕💕

  • Suzanna, my daughter was diagnosed with cll after giving birth 2 years ago. We went to Dr. Byrd at OSU and he says it's MBL and she's in a gray zone. She is now 37. Who do you see? Where? She had an enlarged lymph node under left arm. Removed and biopsied.

  • Hello, I'm technically in a grey zone between MBL and CLL at the moment as my consultant is unclear about whether pregnancy has caused an increase in my lymphocytes and whether these will decrease again. However, without running the detailed tests again, he was pretty sure that I have now crossed into the CLL category. I live in the UK so go to a local hospital in England. I don't have any symptoms or noticeable nodes. I'm seeing a CLL specialist next time. Are your daughters lymphocyte levels low? I wish her all the best with her health.

  • Wow your story sounds very similar to mine.

    I was diagnosed with cll while pregnant at age 36 . I was so perplexed when read more common in older men, and not common in woman under 55.

    I understand those fears of not being around for children. My baby had his own health issues and I was dealing with my diagnosis so the early months was hard emotionally. My dr suggested treatment right away but I choose watch and wait, and that is still the case.Now almost 11 yrs, I am now 47. I have learned to think of it as a chronic illness, live life to its fullest when you can there will be good days and bad days where you are exhausted. I have a good community of support my family, friends and my Faith in God and trust God with whatever He wills. I do take vitamins, supplements and herbs and I am health conscious with my diet, it seems to keep me feeling better. If i slack on those I tend to feel worse. Over all I have learned to accept my condition and not let the disease control my emotions, but sometimes it controls my activity because I am busy and blessed and its hard to stop and rest.

  • I'm so sorry I've only just picked these messages up. Thank you for replying. I can relate to the emotional early months. We had a few scares with our little one too and it was incredibly hard emotionally. The worry about him at that time was far more overwhelming than anything else. Could I ask out of interest what vitamins and supplements you take? Also out of interest did you have any pregnancy related conditions? Your post has also given me hope. Thank goodness you chose to watch and wait.

  • Hi is anyone still active in this forum?

  • Hi Jackjack, the forum is a bit slow presently but yes it’s certainly still active. Unfortunately, your post from a few hours ago was a response to a very old post so it has been buried in the number of older replies.

    Perhaps consider posting your own situation and questions to elicit a better response.

    Why is CLL suspected but not confirmed in your case?

    Best wishes,

    Newdawn

  • Hello and thank you for responding! I'm going to try and explain without being so long lol had my daughter August of 2014 everything was normal expect halfway through pregnancy I was diagnosed with cholestasis they just gave me meds and had my baby at 37 weeks do to still birth chances ..a year or so after I went to get a physical and doc said everything was fine except my wbc but he said it was no biggie it was my body fighting off a virus so a year later went to another doc for a physical and he said everything was fine except my wbc at 12.5 I think and high reactive protein at 16 but he said the same thing it was my body fighting off an infection or virus so he didn't seem conceded so neither was I..got pregnant with my 2nd baby Nov 2016 and did a cbc w/diff in January 2017 everything was within normal range but in May had another cbc and my wbc was 14 but normal lymphocytes and everything else ...had my baby July 20th through c section (breech baby) everything went well the doc just said I bled alittle more than usual because I was alittle anemic but it was normal ...so this past September 14th went in for another physical and I had a wbc of 11.1 with high 4.7 lymphocytes the doc said she wanted to retest me and if it was abnormal again she's refer me to a hematologist...so it was abnormal of end at 12.8 and lymphs of 7.1 ...went to the hematologist he wanted to rule out cll and lymphoma but since my insurance was already over the test would've cost me over $1000 money I don't have at the moment so my father said we will takea trip to el salvador where he has family doctors and I'd get a full screening since it is cheaper there .. I'm hoping for the best but it's all in God's hands ...would highc reactive protein have anything to do with leukemia ?

  • Hi, I'm sorry for the delay. I haven't been logging on as often. I also had cholestasis and was induced early with my baby who was born at the end of last year. I also had other complications but no links have been drawn to me having CLL. My bloods shot up after my pregnancy and did not come back down again. I hope that everything has settled down for you and you haven't received an official diagnosis of CLL or MBL. This forum is fantastic if you have further questions. Feel free to message me also if you have any questions about my case.

  • Hi Jackjack,

    Sorry you have this worry at the moment when you should be happily enjoying your babies without this extra concern. It’s a shame the testing cost proved to be prohibitive because it’s absolutely necessary that you have further haematological testing including a flow cytometry test which can detect blood malignancies if they exist.

    Your ongoing raised C Reactive Protein is curious without evidence of obvious infection or inflammation. CRP is a widely used systemic marker for diagnosing acute and chronic inflammation. Mine was well over 100 when I had pneumonia and the recommended levels are between 1.0 -3 mg per liter of blood. CRP does appear to be higher in people with malignancies however from everything I’ve researched possibly implying a close linkage between inflammation and malignancy. However, there are many other reasons for raised CRP levels and there could be inflammatory factors at play which you are as yet unaware of. It could very well be that the cholestasis detected during your pregnancy may well be playing a part in raised CRP levels. There may be undetected inflammatory reasons.

    Your absolute lymphocyte levels have bounced around with a raised WBC but this doesn’t lead to a definitive diagnosis of CLL. It needs further testing because there is a condition, sometime (but not always) a pre-cursor to CLL called MBL which is Monoclonal B Cell lymphocytosis. This excellent article will explain this in detail;

    cllsupport.org.uk/cll-sll/s...

    The important fact is this;

    ‘However we now know that in any given year only 1-2% of patients with MBL progress to CLL compared to 5-7% of patients with Rai stage 0. Thus in 10 years only 10-20% of MBL will progress to CLL.’

    I appreciate that your ALC (absolute lymphocyte count) has bounced around slightly under 5 but is now over 5 (5,000) which is why it’s imperative that further diagnostic testing is done in a reliable clinic. You also need follow up with a haematologist skilled in these matters. I couldn’t possible know whether pregnancy or recent birth has had a temporary effect on your levels but for your peace of mind, I think you need to know whether blood levels have settled. I really hope they have gone back into range.

    You’ll appreciate that CLL is statistically very very rare at your age so medics are not necessarily primed to it’s possibility.

    Wishing you well Jackjack and a good outcome. It seems quite wrong that you are unable to receive adequate diagnosis as the result of financial reasons but being from the UK, I’m in a privileged position with the NHS.

    Best wishes,

    Newdawn

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