So much to learn

I was diagnosed with CLL about a month ago. I just turned 47 in August. I was having stomach pain and thought it was just acid reflux. My wife told me I should go to the doctors so I did. The doctor gave me medicine for acid reflux but decided to have a blood test done. The next day I received a call from my doctor and he said I had a critical increase in my white blood cell count. He referred me to a specialist and they told me that I may have Lukemia. They said they wouldn't know for sure until they ran more tests. I had a CT Scan done and more blood taken to send to the lab. I will never forget I was at work a few days later and my phone rang. When I answered it it was the doctor. She said I'm sorry to tell you this but...you have CLL. When I went back to see the doctor she showed me my X-ray and everything looked ok accept for my spleen was enlarged. She said I was at stage 2. I felt like I had been hit by a train. I was in shock. I had a bone marrow done a few days after that and the DR said I had 25 % in my bone marrow..I have no idea what that meant. I am on watch and wait for 30 days and then I have to go back to have another blood test to see if there are any changes. I'm glad I found this CLL support website. I have no idea what my future holds for me now. But reading some of the other CLLrs posts on here has given me strength. I have posted on here before asking about flu shots..but I wanted to tell my story. There is so much to learn about this disease. I know I am not alone. I will be seeing my doctor again soon and wonder if I will have to start treatment. I may also go to MD Anderson for a second opinion. Maybe some of you that read my post can tell me what to expect.

31 Replies

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  • BCTEXAS

    Sorry you had to join the club no one wants to.

    Firstly with only 25% bone marrow infiltration you will probably have a fair time until you need treatment. Just to give you an idea mine was 97% infiltrated when I had treatment however it does also depend on other symptoms.

    You will find a great number of posts from newly diagnosed patients and answers given by those of us more experienced in the topic Recently Diagnosed.

    Don't panic !

    Learn what you can at your own pace. Ask any questions you may have there are no stupid questions on here!

    Hope all goes well at your next consultations.

    Best wishes

    Geoff

  • Thank you. I will stay positive.

  • Sorry to hear your diagnosis... I was 52 when diagnosed... almost 18 years ago...

    Watch and wait, commonly goes on for years, it is one of the many oddities

    of this slow moving cancer...

    So, unless you are having other issues, chances are you won't need treatment

    for some time, and treatments are changing rapidly and for the better...

    ~chris

  • Thanks Chris.

  • Welcome to our site, you will find loads of information and advice here, and it's good to know we are not alone with this cancer we have.

    Take care

    Elle

  • Thank you.

  • Most people do not get a bone marrow so early in the course of CLL but most people do not need treatment until their marrow is 70-90 percent CLL. You appear to be no where need treatment currently with only 25 percent involvement My marrow was 70% involved when I entered a clinical trial with ACP-196 due to intractable ITP. Good luck you have time before treatment perhaps years.

  • Thank you for your reply. Good to know I'm not alone in this fight.

  • You're certainly not alone BCTexas but only one month after diagnosis, you must still be in a state of shock especially as the diagnosis seems to have been unexpected (I had abdominal pain too leading to diagnosis just over 3 yrs ago).

    Give yourself time to come to terms with things and gain knowledge that will inform rather than just unnecessarily spook you. It seems like early stage for you and you have the immense advantage of MD Anderson for a second opinion. You've already received diagnostic tests that many don't receive at this stage (certainly in the UK).

    Feel free to post anytime and let us know how your initial consults go as your baseline is established and things are monitored. I hope your CLL journey is uneventful but with this community support, it won't be taken alone.

    Regards,

    Newdawn

  • Thank you. I will make sure to update my situation after my next doctors visit. Everyone on here has been so helpful.

  • Hello. It seems we were diagnosed at about the same time. I'm stage 0, and the CLL was discovered following routine blood work. My primary care physician just didn't believe I had it, as I was/am totally asymptomatic and my other blood test results were perfect, aside from the high WBC and lymphs. I'm over here in Alabama and have a wonderful hematologist at a university-connected cancer center.

    I can't urge you strongly enough to go to M.D. Anderson; it seems to be the "mecca" for cutting edge CLL research and treatment in the US. It seems a good idea for you, especially as treatment (which you may or may not actually need) was mentioned. If/when the time comes that I need treatment, I will seriously consider heading to Houston. All the best to you!

  • If I have to start treatment I will definitely get a second opinion by MD Anderson. Take care.

  • I can relate as I was just told 4 weeks ago. I know this is cancer and horrible and I wish none of would have this disease or any cancer but compared to my friend who had an aggressive Type of adult leukemia, I feel very lucky. My friends leukemia was a type that required immediate in hospital chemo and he passed away within 4 months of diagnosis at the age of 44. My father had the same Leukemia and passed away within 5 months at 46.

  • I'm sorry about your loss. And I wish the best for you. I have 4 young children..twin girls 7 years old and two boys an 11 year old and a 14 year old. I want to be around for them as long as I can. Take care

  • Thank you BCTexas. I have a six year old daughter and I can tell you this cancer will never take me without a fight that it will be shocked at my will to win.

    I will never give up and each obstacle might change my strategy but this is a Battle I will not accept anything but victory.

    I am confident that CLL is extremely close to being at a point it can be managed for life like so many chronic diseases. Let's fight like hell until that time comes.

  • Amen to that . As long as I have air in my lungs I will fight....and I will win!

  • Amen indeed. I have a chronic disease, I don't plan on going anywhere for a long time. Thank God it's 2015 and not 1995. We are at a point of cutting edge medicine and we are very fortunate.

    Every day is a gift and let's stay focused on the positive.

  • Hi BC Texas, I am Corin, male, in England. I was 38 when diagnosed with CLL. I'm 47 now. My understanding is that CLL is much more often found in older people. Over 60. You're nine years ahead of where I was, so hopefully your illness doesn't grow as fast as mine. I'm still here 8 and a half years later. I remember when I was diagnosed I asked my doctor what my life expectancy was, and he suggested 20 years. There was a logic. Within the next five years there may be a cure. The drugs have come on massively over the last five. I know being diagnosed is massively shocking. Take care

    Corin

  • Corin, thank you for sharing your story with me. Take care.

    BC

  • Welcome to the club BCTexas that no one wants to be a member of, I was diagnosed at 49, four years ago, I understand the shock, I am still on Wait and Watch, there are many different dna varieties of this disease, just take it in baby steps there is a lot to learn. Dr Sharman is a wonderful specialist his blog really informs you, this is his link!

    cll-nhl.com/

    it is mostly a slow moving leukaemia, exhaustion and low immune tolerance and many lymph nodes is my biggest complaint. I wish you all the very best along this journey, cll@listserv.acor.org is a wonderful connection to other CLLers and there are some great people to give advice and to make friends with, I highly recommend to get connected through this list server you will be welcomed. If ever I have any worries etc they are usually answered here at cll@listserv.acor.org

    Regards Heidi 13qdel

  • Thank you. Do you get headaches? Lately have had headaches and lower back pains. My lymp nodes are swollen in my neck as well.

  • Hi again BCTexas, I have always had headaches but don't know about them being related to the CLL, you should definitely speak to your CLL specialist about any of your worries, just make sure you have a really great specifically CLL specialist, GPs don't know enough about this! All the best Heidi

  • Hi BCTexas, welcome! I was diagnosed at 48 and have been in watch and wait for over a year 1/2. I did get a second opinion with Dr. Weirda at MD Anderson. That was the best thing I have done for myself. I waked out feeling very good and positive about CLL. I also come to this site and everyone here are so friendly, helpful and very knowledgeable. Remember try not to worry too much.

    😀

  • Thank you. What stage are you at? I was told I on stage 2...I have my follow up appointment with my specialist to check my blood again tomorrow. I'm nervous about it. Wish me luck.

    Take care.

  • I always get nervous before getting my blood checked. I would definitely find a doctor that specializes in CLL. It helps a lot! I think I am still at stage 0 but my numbers continue to go up each time. I have apt in a few weeks I will ask. Good luck tomorrow!! 😃

  • BC,

    I was diagnosed a year ago in August. In our part of Texas we have a two season climate "Heavy Mosquitoes and Light Mosquitoes". I have 50% of bone marrow that are making the defective B cells. My oncologist said they would start treatment when that number gets to 55%.

    I am planning to get a second opinion from M D Anderson before I start treatment. Currently I am stage zero with no lymph nodes involved. I have a good oncologist but he treats all kinds of cancer. There are doctors at M D Anderson who specialty is CLL.

    Also. M D Anderson runs clinical trials of new drugs. You can check on MD Andersons website and see if you qualify for any ongoing or upcoming trials.

    I will but you on my prayer list.

    Best Wishes

  • Thank you. I am at stage 2. I had my follow up doctors appointment today and the good news is my white blood cell count went down. My platelets are low at 108 but not critical so I continue on watch and wait for three months and then they will check my numbers. If and when I have to start treatment I will definitely get a second opinion from MD Anderson. I don't live too far from them. My lymp nodes are a little swollen and I do have a little pain in my abdominal but I guess I can live with that for now. I have 25% in my bone marrow and my spleen is enlarged..everything else looks good..liver..kidneys. I'm trying to eat better and exercise. Other than that it's out of my hands. It's good to know there are fellow CLLrs here in Texas.

    Best wishes to you,

    BC

  • Hi Harold,

    Thanks for giving an excellent personal example of why it pays to go to a CLL expert rather than a good oncologist that treats all kinds of cancer.

    I'm very pleased to hear that you are going to M D Anderson for a second opinion, because I've never heard of exceeding a specific bone marrow involvement percentage as a reason to start treatment, particularly one as low as yours. Coincidentally at diagnosis my CLL bone marrow involvement was found to be 55% - and that was 6.5 years ago when I was found to be stage IV. I haven't had a bone marrow test since then and while I'm approaching the need for treatment, I've avoided the risks associated with treatment for all that time and enjoyed over 6 years of living without being impacted by possible long term side effects of treatment.

    There's definitely a good case for starting treatment before bone marrow involvement becomes too high, but that can be assessed without bone marrow tests by monitoring trends in platelet and haemoglobin levels per internationally recognised standards drawn up by CLL experts. I've heard CLL patients stating bone marrow involvement into the 90's prior to starting treatment.

    Given you are stage 0 and only 50% bone marrow involvement, I hope this means that you can go at least 6 years and hopefully many many more before needing treatment!

    Neil

  • Neil,

    I am at stage 2 with 25% bone marrow. My platelets are at 108. My white blood cells are down. Is it possible I could be on watch and wait for many yesrs? Also is it normal to have pain in your abdominal and an enlarged spleen? Do you have any of these symptoms.

    Best Regsrds,

    BC

  • Hi BC,

    With CLL being so heterogeneous, anything is possible. :) Seriously, CLL experts are still trying to find a reliable prognostic indicators, so even the best CLL experts can only give you some rough indications of what your path may be.

    In your case, given your platelets are at 108, if they continue to trend down, then that may be the trigger for you to start treatment, but platelet levels are just one of the many factors that are regularly assessed to determine whether starting treatment is appropriate. My platelets dropped to 101 over 3 years ago and have bounced lower and higher since then. I expect falling platelet levels will trigger my need for treatment, but it could well be some other factor.

    Spleen enlargement is common with CLL and it would be a factor in you being assigned to stage 2. My spleen was found to be enlarged at diagnosis, but my haematologist says its size has hardly changed in over 6 years. It's not usual to have pain associated with an enlarged spleen, but some report a level of discomfort when it becomes very enlarged. You should work with your doctor to discount other causes for your abdominal discomfort before accepting that it is due to your enlarged spleen.

    Neil

  • Thanks Neil. I'm glad I found HealthUnlocked. Feels like my second family. :)

    Cheers.

    BC

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