Mom was recently diagnoses

Hello,

I came across this page was frantically searching the web about CLL. My mother was diagnosed a few days ago. She has lived a fairly healthy life and is only 60 years old. While telling me it was positive that she had CLL she seemed pretty positive but all I heard was "cancer" she kept saying if she was going to get cancer this was the best one to get.. However my anxiety is through the roof reading different things on medical websites. I don't know much other than her doctor said she doesn't need treatment right now.. However she does have swollen lymph nodes and will be have a CT scan within the next few weeks. I feel so lost trying to find answers to all of the questions that I have. I'm assuming the swollen lymph nodes aren't a good sign but I'm hoping somebody can tell me some positive outcomes of CLL or something to make me feel somewhat better with this rather shocking news. I am wondering how long some of you have lived with CLL?

Thanks,

Confused

20 Replies

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  • CLL is a chronic cancer and about 25% of us diagnosed with this generally slow growing blood cancer never need treatment. Importantly, the best medical advice is not to treat people with CLL until necessary, because while treatments improve the quality of life, until recently with newer treatments (and there are lots of new treatments under test and some very good treatments recently approved), treatment didn't extend life expectancy and it's too soon to tell with the newer treatments. That's because it takes 10 years or so to really be able to tell the difference - which gives you an idea of how slow growing this cancer generally is.

    There is lots of misleading and outdated information on the Internet about CLL, but you've come to a knowledgeable place with 2,500 of us either living with CLL or caring for someone with CLL. Many of us have swollen lymph nodes and it depends where they are and then how large they are when it comes to considering the need for treatment. Your Mom's CT scan will find that out. Incidentally, the current trend is to NOT have CT scans at diagnosis. An experienced CLL specialist can usually assess how we are doing without needing one.

    Here's a poll of our community from several years ago that will give you an idea of how long many of us have lived with CLL before needing treatment:

    healthunlocked.com/cllsuppo...

    Have a look at the Pinned Posts to the right for more information you can share with your Mom. Your Mom has good reason to be positive for reasons other than to allay your anxiety! There's plenty of information here that can help your Mom live well despite her diagnosis and if she does eventually need treatment, we have members from all over the world that have experience with the various recommended treatments. CLL can cause serious consequences - but education can help us avoid or at least minimise some of them. This really is an encouraging time for us with the possibility of a cure seemingly imminent.

    Neil

    PS I was diagnosed with stage IV CLL over 6 years ago and I'm still untreated.

  • Neil, when I read your posts I always feel better! Your advice to all of us is so helpful. Thank You for what you do, and for what you don't even know that you do for all of us here. Maria

  • Hi there,

    It is a shock to hear someone in your family or a friend has cancer. This forum is an excellent site to get answers and support. I'm your Mum's generation and have been toddling along with CLL for nearly two years. I was in a state of shock too but with an increase in knowledge I have been able to put it in perspective (mostly) and now just get on with life and stay as healthy as I can.

    It sounds like your Mum has a positive outlook on life, I think you go one step at a time and learn as much as you can.

    Take care

    Lorraine

    pS

    There are no stupid questions here so ask away!

  • Hi, I'm similar age to your mom and was diagnosed nearly two years ago. So far I'm on wait and watch so no treatment other than regular blood tests. I do have swollen lymph nodes, and lumps and bumps. I seem to catch every cough, virus but other than that I'm ok. It's the word cancer which is scary and hard to take it. Be positive for her and hopefully we will both of a long time in wait and watch. It can be harder for family members to take in than the patient x

  • I know it is hard to get your head around all of this. The "watch and wait" phase was hardest for us. My husband was diagnosed in 2006, he was 64 and he is still here. There have been remarkable strides made in the treatment of CLL since he was diagnosed. It is very possible to live for many years with the disease. I don't know where you live, however, if it is near Orange County, CA, one of the worlds experts in this disease, Dr. Susan Obrien is now at UCI. She was at MD Anderson for 29 years and is wonderful.

  • I've had CLL since at least 2001, and am still on W&W. I have niggling symptoms, but quite often find these are more a case of assuming every little thing is caused by CLL, rather than the normal things that everyone gets. Try to stop worrying, this is something that is very slow growing, and your Mum may well be one of the 25% who never need treatment.

    The one thing this disease does make us do is to appreciate what we have here and now, every day, instead of worrying about the future. Today is all anyone has!

    Chris inWales

  • If you have time to watch a very well done meeting presentation (3 hours)...

    Look at these.

    It will serve to relieve you somewhat of the issues facing your Mom.

    CLL Town Meeting morning / afternoon Sessions in Houston, Texas

    vimeo.com/144033980

    vimeo.com/144121426

  • Hi Prayingformymom,

    Very sorry to hear about your mother's CLL diagnosis. It's hard to know what to say to patients and their family to try and put their minds at rest. CLL is normally very slow in progression and many patients live long lives with it. Over the last couple of years there have been tremendous breakthroughs with new treatments for CLL, especially with non-chemo types. This fact alone gives us a lot to be positive about. The more you study CLL the more you will realise how different it can be for individual patients, so there are no hard and fast treatment regimens or do's and don'ts. Your mother's haematologist will know a lot more after the CT scan. In my case I had swollen lymph nodes at diagnosis (2008) but no spleen enlargement. I was put on watch and wait for nearly three years after which my CLL had progressed far enough for treatment. In 2011 I was placed on what they term the FCR chemotherapy Regimen. I am pleased to say that four years on I am still in re-mission and feeling well although a little fatigued, one of the more common side effects of CLL. So try not to worry too much, there is a lot that can be done with CLL and there are lots of willing folk on this forum that can help you with day to day questions and concerns.

    Wishing your mother all the best

    Kevin - Harlow, Essex, UK

  • Good to hear Kevin. How was your remission determined? Blood tests or bone marrow. I'm trying to figure out if I am in remission and can't get a clear answer. Thanks!

  • You may need someone more experienced than me Fenway to answer this one. I had blood tests and a CT scan at the end of my chemo treatment and was told that my lymph nodes and spleen were back to normal size, and my bloods were near normal I believe. I don't know what my actual bloods were or what exactly they based the "remission" diagnosis on? but remember my haematologist saying something along the lines of "you are under 30%, so in complete remission".

    This link given by Chris a few days ago may help explain.

    bloodjournal.org/content/bl...

    Kevin

  • thank you! The study is over my head but helps me figure out questions to ask doctor!

  • As others have said cll is a chronic disease many of us live with it for years!

    I've been part of the club since 2000 with initial treatment in 2005 then 9 years in remission until January this year. Further treatment this year now back in remission hopefully for a long time.

    Your mom seems to have the right attitude whilst you are obviously worried.

    As you see from the replies to your query all is not doom and gloom!

    Your Mom will react individually to this condition because we are all different but she is in watch and wait at the moment which is a positive position.

    Ask away of any question I am sure our wonderful community will be of help.

    Geoff

  • I am truly sorry to hear about your mother's recent diagnosis. As some of the other posters have noted, CLL is chronic and tends to be slow moving. It is a lot to process for anybody, both patient and family. Early on, there usually is a lot of testing to understand the nature of the disease, status, and assessing progression.

    While nobody is fortunate to have cancer, any cancer, there has been a revolution in the treatment of CLL in the past few years. Additionally, there are many communities and support resources such as HealthUnlocked, Patient Power, CLLPAG, Brian Koffman's Blog, and LLS for you to draw upon.

    I would strongly encourage you and your family to reach out to these, much as you did with your HealthUnlocked post, for support. We are all in the mix with you.

    Please check out this link as well.

    patientpower.info/blog/pati...

  • I’m 18 years next month...treated in 2012...

  • I was diagnosed Feb 2006 ... untreated - Watch & Wait

  • Well Sweety, I've had it for 15 yrs and am still on 'watch and wait'. I'm almost 66 and feel just fine. The best thing you can do is enjoy each day,no point in wasting our time with worry...about anything,....eat healthy,exercise moderately,get lots of sleep and get your blood checked when the doctor says and let him do the watching. Your mom is right,could be so much worse.

  • All of the above plus...

    Only use this site from now on. I did the same as you and googled my poor self crazy !

    Whatever you need to ask this is the place!

    Maria xx

  • Hi,

    Sorry to hear about your Mum's diagnosis. I was only diagnosed in June of this year with SLL,which is much the same as CLL,only my Cancer is in the Lymphatic System as opposed to the blood.

    It is very scary being given this news, and I am still trying to get my head round it, and Trying to remain positive, which is hard at times, as everyone will agree, but you couldn't have found a better place than this site, where there is always great advice to be given, as well as support.

    Best wishes to your Mum

    Elle

  • I was diagnosed at 50 and 7 years on still watch & wait thankfully x

  • Welcome to the place no one really wants to join. There are good people here with good information, so just ask away & you'll get answers.

    It can be very scary when you're first diagnose with a cancer, even CLL, but in the year since I was told I've come to appreciate that by trying to stay reasonably fit & health can help you stave off the need for treatment for a good while.

    As with so many things there are no guarantees & in some cases they find it at a stage where treatment is needed, but if your mom wasn't showing symptoms like loss of weight or extreme fatigue then there's a good chance she can put off the need for treatment for sometime.

    Help her stay positive & strong & I'm fairly certain she'll be around for a good while yet.

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