Hi all,
I am new to this support group and wanted to know if there was anyone out there with a similar situation to me.
I was diagnosed with CLL (RAI stage 3) back in July this year after being treated for a missed miscarriage. I am currently on watch and wait, which I am finding very hard mentally.
I just wanted to know if there was anyone else who has been diagnosed of a similar age to me and what your experience has been like?
Thank you
Hi ALS27,
Sorry to hear about your diagnosis. I was diagnosed in July 2019 at the age of 39 - I thought I was diagnosed at a very young age so it must be a complete blow to you as you are so much younger. Feel free to read my other posts or message me.
There is a Facebook group for younger CLL patients - CLL support group (ages 50&under) - see if you can find it, it's totally confidential.
This forum is a great source of information and it is full of supportive, kind and caring people.
The Facebook page is good in the sense that there are lots of people who are going through things at younger age - thinking of starting a family, pregnancies, working with CLL, living with CLL and small kids who need to be immunised with live vaccines, you get the idea...so I do find comfort in hearing others with the same problems like me because we are the same (similar) age - it might be something you are looking for.
The wealth of information you will find here though is priceless.
How are your numbers and do you know your markers? It's a lot to deal with and I have days when I don't think about it ( they are rare I must admit) and I also have very bad days...I have three small children and am a primary school teacher (currently covering a SENCO maternity leave) so I sometimes feel overwhelmed by it all...
Dealing with all of this while living through a world pandemic is sometimes too much - I sometimes catch myself thinking - I would want to have your worries - when I hear friends, colleagues or people in general moaning about things that seem totally irrelevant and petty to me...
Hope you are well.
Petra ❤
Hi Poodle2,
Thank you so much for the reply! I really appreciate the support and advice.
I will definitely try out the Facebook page as that is exactly the predicament I am in. This year was our year for trying for a family and to have gone through a miscarriage and then be diagnosed with this, it has just put a road block into our plans. I know life doesn’t always work out how you want it and of course my health and wellbeing is important but I can switch off my priorities. And then you ask the question - why me?
I’ve had an egg/embryo preservation as a precaution to make sure if I do become infertile I have options so that’s a positive!
Unfortunately I do not know my markers but my WBC last tested was around 250 and my haemoglobin was below 100 so I am anemic. I have an appointment at the hospital tomorrow so they can examine my spleen as it’s very enlarged and they want to know if it has increased since the last appointment.
Have you started treatment yet? Or are you still ok watch and wait?
I’m so glad I reached out, the information and support already is incredible! I am so glad you said that about your friends/families general problems seem irrelevant and petty as I am the exact same.
Thank you again for replying and I hope you’re well too
Amy ❤️
Yes, Amy, I totally get you - I still ask the question too, why...well, it's just what it is and nothing we can do to change it. It's definitely helpful to have a supportive partner, my husband is my rock and loving family and friends get me through tough days too although I don't really talk to them about things that worry me too much as I know it's hard for them too - I think most of us go through the guilt when sharing our fears and worries with our loved ones...I know I sometimes "loose the plot" and freak out and over react but hey, I think we are allowed to when we deal with this diagnosis right?
As for having children - having CLL does not mean you won't become a mum, stay positive. I was 27 weeks pregnant with my third child when I was diagnosed, it was a really sh...y situation (pardon my language but I really felt like I was living the worst nightmare)...but do you know what? The pregnancy was no different to my other pregnancies, our little one was absolutely fine. The labour itself was uneventful, you wouldn't know I was sick...I wished I had known before as I was feeling stressed and guilty that I was putting our baby boy though the stress of the initial reaction to such a life changing situation. The only difference I felt was the fatigue I felt, terrible fatigue and I was coming down with lots of colds that lasted forever, weeks and weeks only to get over it and catch something in a week's time again. CLL and pregnancy both weaken your immune system so the combination of both was just not ideal I guess. I was also given blood thinners that I had to inject for 5 months daily but that was probably specific to me - they told me it had more to do with my age than the CLL itself. Who knows?
I breastfed our little for a year so there were no issues with that either.
Sorry that you had to go through a miscarriage, it's a very painful experience - I went through one myself, it was between our oldest and our middle one. It's hard to get over and the experience will stay with me forever. It does not mean it will not work out next time.
I am on watch and wait although my numbers (lymphocyte count) seem to be trending up since spring. My platelets and haemoglobin seem to be stable and within a normal range. It's hard to deal with when you see the numbers increasing but it's the nature of the disease, I have to get used to it I keep on saying to myself. I am mutated and del 13 so I'm told I have favourable markers - I pray that's the case.
Great news on here today about the new frontline treatment for CLL patients in England and Wales. I like reading news like that.
I take things one day at a time and don't plan too much ahead, you never know what's coming your way, I try to enjoy everything and am grateful for each and every single day when I wake up and am here to kiss and squeeze my three little munchkins (and my hubby of course 🙂).
Make sure you find a CLL specialist, it does make a big difference - not just a regular haematologist - if you post on here where you live (country, area, nearest city) there will be someone more knowledgeable than me who will tell you who to see.
Try to stay positive, easier said than done but it will get easier. I read and read and read about this disease as much as I could when I was first diagnosed. It helped me - knowing more about it, try to find peace.
Post here if you worried about anything, it always always calms me down when people respond and comment.
Hi Poodle2,
Your responses give me so much hope. Thank you so much for the support ❤️
I definitely agree, it’s amazing to have loved ones around to help but we all have every right to react in unpredictable ways and some of us will handle the news differently but I cannot believe how since writing on here it’s made me feel ‘normal’. Also please don’t apologise for your use of language, sometimes is the only way to explain a certain situation or feeling!
That’s amazing to hear about your diagnosis through pregnancy and I really appreciate the advice and to hear your story. It gives me so much positivity to think that I could also have a successful pregnancy and still manage my CLL. It must have been a terrifying thing to go through whilst being pregnant and I take my hat off to you because that must have been tough. I am so sorry to hear about your miscarriage too. That in itself is a devastating experience. It sounds like you have been through so much and I’m so happy to hear you have your family around to help.
Thank you so much for mentioning the frontline treatment for England and Wales! I hadn’t seen the post and will definitely be mentioning this in my appointment tomorrow.
I will take your advice on the not planning too far ahead as I’ve always been guilty to be like that even before I was diagnosed. I’m sure in time I will have accepted it a lot more and built my knowledge up. I need to stay away from google and from now on I am going to use this community to get the information I need.
I think it’s amazing how this support group has been created as I don’t feel so alone anymore. I feel like a weight has been lifted.
I cannot thank you enough for being so open and honest about your experience. I wish you all the best!
Thank you
Amy
Hi ALS27,
I'm not in your situation ( I'm 62!!), but I'm sure other younger members will make themselves known to you. It's extremely hard for most of us to come to terms with the diagnosis at first and the fact that we are put on watch and wait -It's like purgatory!! You will find this community both knowledgeable and supportive, please try not to google, most of the inf o there is out of date. There are many new treatments available now, than even 5 years ago and even more on the horizon. I know this won't help the turmoil in your brain, and you have been though so much this year already, what a year for you. I hope you have someone to support you, but if not, this community will always be here for you 🙏🏼
Hi AutumnJ,
Thank you so much for the response. I completely agree, no matter what age we are, being diagnosed with any type of illness is devastating and the watch and wait is dreadful. It really pains me when people say ‘that’s a good thing, you must be well enough to not need treatment yet?’ And I am guilty of googling and not being happy with what I read. I am so glad I reached out as I do need to build my knowledge up of CLL and the support I have received already is amazing! Yes I do have my fiancé who is doing great at keeping up with my moods swings! But thank you so much for the response! I hope you’re well
Amy ❤️
Dear ALS27. Sorry to hear about your diagnosis. I was diagnosed at 49. Now at 67, I am amazed about how I got this far. Don’t ever give up! Figure out your priorities and go after them. And if you have any questions ask your GP, ask your doctor, or Oncologist and check into this web site for answers. Stay safe. Anna
Hi Ellieoak,
Thank you for the reply. That’s great to hear you have done so well! Have you not had any treatment within that time? How do you feel now?
That’s really great advice and I need to remember that more often. To remember my priorities and go for them without letting CLL take over every thought and decision.
I’m so glad I reached out, the support abs knowledge on here is incredible!
Thank you again for the response and I hope you are well
Amy ❤️
Well Amy, I have had many treatments since my diagnosis. When I was first diagnosed the doctor told me I had 5 years to live. I left him and got another doctor. I did about 9 yrs in watch & wait. Then I did Rituxian and bendamustine. I turned out to be allergic to Rituxian so I did 6mo of Bendamustine. That lasted me about 3yrs then my WBC got to be 465,000 they put me on Imbruvica which held me for 5yrs. Then they switched me to Venteclax which I’ve been doing for the past 2yrs. My WBC count is now 5.4. In the meantime I’ve had many surgeries take place too. I’m still walking my German Shepard, gardening, cleaning and cooking through the pandemic. Stay strong. Anna
My son was diagnosed at age 34. His numbers weren’t high, but he had a huge cervical node, and expecting a baby, chose FCR. That was completed 2 Years ago, and he remains in remission. He is lucky that his job allows for sheltering, Good luck on your road ahead.
Hi Kasren,
Thank you for the response and that’s great to hear he is now in remission and let’s hope he stays there for a long time! Congratulations on becoming a Nanny too.
Really appreciate the support and experiences you have shared! Gives me hope! I hope you’re all well.
Thank you again for the response
Amy ❤️
Amy the CLL society also run an under 60’s group. It is run by Norah Grant who is lovely. I will message her and ask her to contact you.
Colette
Hi mrsjsmith,
Thank you so much for the advice. I will look forward to hearing from Norah.
I hope you’re well
Amy
Thank you yes Amy I am well.
Diagnosed back in 2007 and have been on Ibrutinib for nearly three years. If you should ever need treatment in the future you will have so many more options. There has been amazing advances recently. Most of which I can’t even pronounce.
Colette x
Hello again Amy. Her email is norah.grant@cllsupport.org.uk
Do message her and join in her zoom meetings.
Good luck and hopefully treatment will be years, if ever, away.
Colette x
Dear ALS27, Welcome. I was diagnosed aged 34 and began treatment within a year. I have been on Imbruvica for almost 5 years and have overall fared well. Watch and wait is hard to accept initially, but is really for the best. Wishing you the Best!!
Please accept my condolences on the loss of your child. It is devastating and then combined with the CLL diagnosis! Please do what I do and flip the coin, so to speak. Take the phrase watch and wait to no treatment needed. It helps me to think of it that way. You will find loads of support on here. Best wishes for a long time on No Treatment Needed!!!!
Hi Loweez,
Thank you for your response and for your support! Really appreciate it. It has been a devastating year on top of COVID 19 too. I will keep telling myself No Treatment Needed! I’m sure it will help over time!
I hope you are well and thank you again for responding
Amy
Hi Amy, my daughter was diagnosed at age 29 back in 2015. She is still on watch and wait with visits to her oncologist every 4-6 months. It's a crazy diagnosis for someone so young as it was shocking to all of us. Knowing that the illness usually affects much older people will take awhile to wrap your head around. You will get to that place where you just accept that so many people are living with chronic illnesses and you just have to deal with it and just stay as healthy as you can. You might find this very positive news, but during the 5 years of watch and wait, my daughter had a little girl ( she is almost 3 now) and just found out she is pregnant again. Just keep moving forward, find out your prognostic markers and know that there are so many new treatments out there every single day. Our daughter's doc, Dr. Furman in NYC, told us that you need to kick the can down the road for as long as you can before treatment, as there are so many new treatments being discovered every day. Try to get all the initial information and then LIVE. Do not read the internet sites that are old as well. Look at dates of articles as the early ones address CLL in a very different way. Always check for current information and use this group for support as well. Good luck to you and stay healthy and try to just keep moving forward.
Hi DPhillips,
Thank you so much for your response, it actually brought a tear to my eye as I was reading it. I do appreciate the advice re pregnancy because it’s constantly at the front of my mind and I suppose the way I found out is the cause of that.
I have an appointment tomorrow with my haematologist so I will ask the prognostic market question. I need to educate myself on CLL much more than I already have done as it seems there is a lot I still do not understand.
I am so happy to hear your daughter is doing well and has been able to do the things she wanted. Fingers crossed I will have a similar experience! Wishing your family all the best and thank you again for responding, it has really helped me
Thank you
Amy
Amy tests in the UK and US vary greatly and prognosis markers are usually only done pre treatment over here.
Good luck tomorrow
Colette
Thank you so much Colette! I really need to enhance my knowledge on CLL. I am certain this support group will help as it already has in a day!
Thanks again for the support
Amy
Collette is right although I think it depends on the doctor/hospital. The haematologist from my local hospital where I was diagnosed said they didn't do it - only pre treatment. However, my CLL specialist from St Barts (one of the big hospitals in London) said yes, let's get it done, without any hesitation.
I think it's worth trying and seeing someone in a big hospital might help?
Hope that you will get the answers you are hoping for.
Amy , so sorry I didn’t include In my earlier post that my thoughts were with you regarding the pregnancy loss. Just try to stay positive and just know you’re now alone. After the initial information gathering you will learn to cope and move forward. You are in the hardest part right now. I promise it will get easier with time.
Thank you so much DPhillips and please do not apologise. Your post gave my Fiancé and I a lot of hope and it’s great to hear the good news stories!
It’s also nice to know I am in the hardest part and that things will get easier. I suppose that’s what built my confidence to reach out and it’s the best thing I’ve done.
Thank you again for your support
Amy
Hi Amy,
I was diagnosed this summer at age 34 and began very successful treatment. I absolutely want to encourage you to feel hopeful. It is amazing how far treatment has developed in mere single digit years.
Sending you all the best wishes,
David
Hi BookLovah20,
Thank you for your response and for sharing your experience! I hope your treatment continues to go well and I wish you all the best too.
Thank you again for the support,
Amy
Hi
Got diagnosed at 45 which according to stats ,is quite young,but doing fine. Just got radiated on neck area for 3 brutal weeks. My blood counts are very normal but lymph nodes get enlarged slowly (sll).Haven't slowed down,working full time doing everything.
Good luck
Hi Albion2018,
Thank you for your response and for sharing your experience! I’m also glad to hear you are doing ok after the radiation. I haven’t slowed down either, I think it helps to keep busy with work and every day life. I wish you all the best for your future and thank you again for the support.
Amy
Yes i was diagnosed at 30 years old.
Living with CLL and new complications 
Diagnosed at 40
CLL with CNS involvement 
CLL diagnosis with Obinutuzumab and Ventoclax offered as treatment
Diagnosed with CLL
