Newbie to CLL

Hello everyone,

Referred to a homotologist for high hemoglobin and they discovered CLL. At this point I am going to have a CT scan on lymph nodes and spleen to see if it is present. The doctor does not think it is from physical exam. The funny thing is now my hemoglobin is perfect. If not effecting my lymphatic system or spleen I will be an a wait an monitor stage.

This is all new and at first was very scary, the first thing I would think about as I awoke was I have cancer, I'm dying. I felt like someone punched me in the stomach, Then I realized everyone is dying and nobody is getting out of here alive.

It's been about a month and I'm already dealing much better. My blood counts are fine it was just a high cluster of B cells that flagged them. I am 48 years old and plan on living another 30 years. I went from waking up in fear to waking up with appreciation. Every smell is appreciated as every smile on a persons face. This has made me really appreciate every day God gives me on earth in a way I have never in the past would have. I have lost my father and a friend to a much more aggressive leukemia so I am thankful that I have a chance to possibly live a full life. As bad as it is, it could be worse.

😉

13 Replies

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  • Welcome Landwell, (and you certainly have landed well finding your way here!),

    I so recognise some of the feelings you describe particularly that awful sense of having been punched hard in the stomach. It's a terrible shock to the system so I'm delighted to hear that you're now starting to find your equilibrium and even being philosophical about it. But aim for 88yrs! Why not?

    Your CLL will have been diagnosed by a flow cytometry test from a blood sample. The CT scan is a test that can show if any lymph nodes or organs in your body are enlarged. It isn't usually needed to diagnose CLL, but it may be done if your doctor suspects the leukemia is growing in an organ, like your spleen. So when you say you'll be on W&W if it's not 'affecting your lymphatic system' I think you mean if there's no evidence of worrying nodal or spleen enlargements. Unfortunately CLL by its very nature does affect our lymphatic system and it's often difficult to quantify the lymphocyte infiltration in our organs. But it's not unusual to have a 'baseline' CT scan at diagnosis and I found mine reassuring. I hope yours is too.

    I'm pleased your haemoglobin is now within range and it sounds like it's early stage for you. This can be a condition that lasts many many years without causing too many symptoms and you'll be monitored throughout on watch and wait.

    Take time to get over the shock, decide carefully who you are going to disclose this to because that's important and feel free to post on here any time for information, advice or just to give and receive support. You'll have your 'wobbly days'. We all understand how this feels.

    Supportive best wishes,

    Newdawn

  • Thank you Newdawn. My hematologist does not suspect it in my organs. She stated that she is confident from a physical exam that it is not as I don't appear to have a enlarged spleen or lymphodes. She did say that most doctors would have overlooked the high B cell count as all my other counts are normal including my white blood cell count. My primary care Dr. Refered me for high hemoglobin. Diet seems key as with anything, losing weight and eating healthy has corrected the homeoglobin within three months.

    She felt that the ct scan is only part of a next step due Diligence to make sure. She does not think I will need treatment short term. I just had an abdominal ultrasound for an unrelated matter and an enlarged spleen was not noted.

    I feel completly normal accept for a few aches and pains as anyone over 40 can relate. That's why this diagnoses really caught me off guard. And yes, I don't plan on ever letting this beat me and I am here to tell you guys you have one heck a fighter on your team.

    It appears that this would have stayed hidden for sometime and I might be on the very early side of CLL.

  • All sounds very positive and early stage for you Landwell. There's a possibility that this may not have been picked up for many years and in some ways that might have been a blessing. My ALC had been rising for many years before the eventual diagnosis and in honesty, I'm grateful for not knowing for those years.

    Glad you're feeling strong and focussed! :-)

    Newdawn

  • Hi Landwell,

    Welcome to the family, I can fully relate to how you were feeling when you found out, its not something that we expect to hear, it was the thought that I had cancer but I looked in the mirror and didn't look any different, I had no lumps no sign what so ever, that was freely thing for me.

    But I'm glad that it's not going to beat you and that you have made that positive decision to stay strong.

    This site has been a God send for me, I can read someone's post and think that's just how I feel or I've got those symptoms, its been my extended family as we are all in this exclusive club together, so if you need to have a rant or need any information, or just to let us know how your doing, there is always a cheery response and lots of words of wisdom to read.

    So please keep us posted on how you are getting on.

    Keep trucking !!

    Take care Jan

  • God bless Jan and thank you. The truth is we will all eventually die and the difference is when you have CLL the reality of this is a little more front and center. Best thing we can do is live every day to the fullest and love like there is no tomorrow because for some there is not. And I'm not referring to CLL patients alone. Sadly tomorrow is not gauranteed to nobody no matter age, sex, race or health condition.

    I have decided to live every day with a big smile and put life in to perspective as this World is not permenant, life here is a vapor for everyone. I for one believe in something after this World. Living in this World as if it's permanent is something too many people make a mistake as this life in our current body is a 100% for everyone, a vapor.

  • Live life like you stole it !! ....that's my moto !!

    So lovely to read your up beat words and your description of us as a vapour, that made me smile..

    Hope your having a good weekend,

    Take care Jan x

  • Lovely to read your post, Jan. So glad to hear from you. I'm still doing well on Ibrutinib and that is due to Anna Schuh in Oxford. I don't need to see her anymore but continue to be monitored in Hereford.

    How are you doing ? Do you see Dr Bloor ? I know he is a very clever doctor.

    Often think about you.

    David. 😃

  • Hi David,

    Great to hear that you are doing well on ibrutinib, I do think it's a wonder drug. I'm currently back on ibrutinib as after my prognosis there was not many options left open to me and as I felt great on it last year when I was on it I asked Dr Bloor if I could go back on it, his response was " Jan you have nothing to lose let's go for it " so 4 months down the line I'm feeling great, have a few aches and pains but life is good so I'm not complaining ...

    Lovely to hear from you David and I hope that life is treating you well too.

    Take care and as always keep trucking !!!

    Love Jan X

  • So good to hear you are doing well, back on Ibrutinib. Keeping my fingers crossed for you. After all you have been through, you deserve some "good" time. All the best, Jan. Let's all think positively. It helps.

    David.

  • Glad you reached out to others with CLL here. This is a good place for support and shared experience. My one suggestion is to get a second opinion from a CLL expert as we share a relatively rare disease and most community hematologist are not well experienced in how individualized therapy must be and how fast treatment approaches are changing. There is good data that those who see a CLL expert live longer than those who don't, all other factors being equal. As others have already said, there really is no need for a CT scan at the time of diagnosis or in fact at most times in CLL. They are not part of any guidelines. Despite that, odds are that you will get many over the many many years that you should live with your new disease, so it is never too soon to start limiting your radiation exposure.

    Take your time to find our more about CLL

    Stay strong and stay in touch.

    We are all in this together.

    Brian

    cllsociety.org

  • Hi,

    I was recently DX with CLL at stage 2. I'm also on W&W. I have a follow up blood test tomorrow and will be back to see my doctor in two days to see if my numbers have changed. I have faith that things will turn out ok.

    Take care.

  • What a great way to look at your diagnosis. It also occurred to me, we are all terminal. But God did not promise us to be free from illness. Sin opened the door to all kinds of disease and cancers that are not discriminatory. The important thing is how we handle it. I had fcr for first line of treatment and was cancer free 5 years. My doctor says it's back a little bit, I don't know what that means, but my next appointment is in December and we'll see. I am not afraid, but I have to admit I have no energy and am down a lot. I have not worked since diagnosis. I was first diagnosed with stage 4 sll. But my hematologist calls is rai 2 cll. They immediately put a port in and started fcr. my kids wondered art 4 and 5 why mommy was so sick. They still wonder, as I tire so easily. Early morning activities are non existent. I believe the chemo gave me nerve damage and I have deep bone pain for which I take pain medication. Thank you for reminding me it could be so much worse. I could be in wait and watch for years. I wish you the very best. I was diagnosed at 45 and I am now 50. Every day is a gift, but I could use some more energy. Lord bless and keep you. Kimsome

  • God bless you also. I try and keep positive although as you know it's not always easy.

    It appears we are the edge of some amazing new treatments and might be on the edge of maybe not a cure but a point where we can be treated for life and stay healthy.

    Keep up the good spirits and God Bless.

    Chris

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