Stage 1

Hello,

I posted last week about my mom being diagnosed with CLL. After a CT scan it was found she does have some swollen lymph nodes but nothing affecting her organs. She was staged at stage 1 and as of right now does not need any treatment. I'm not sure what this means but I do know its a lot better than what I originally thought. Thank you all for your kind words! This is a great community that I have been lucky enough to find!

10 Replies

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  • Hi Prayingformymom,

    Sounds like your mom is in good hands. As she has been told she doesn't need any treatment she is on what is called "Watch & Wait". She will probably have been told to return for a blood test and check-up every three/six months to monitor the CLL. The blood test is to keep an eye on her white cell counts etc, and the doctor will give a physical examination to check for swollen (or more swollen) lymph nodes. Unless there is a crucial change is her CLL she may stay on watch and wait for some time. How long that time is hard to say, it is different for everyone but suffice to say it is good news for your mom.

    Wishing your mom well.

    Kevin - Essex, UK

  • Great News!

    Hope you are feeling a bit more positive than you were?

    CLL is staged from one to three normally three being the stage when treatment is considered.

    As was said above your mom could be on watch and wait for some time. Around 33% of patients diagnosed will never need treatment. This is typical of this chronic condition as it is a slow moving. It does vary so much from person to person,in fact very few have a typical journey with cll we are all different.

    Your mother will now be given regular appointments to check the progress of the condition. It is worth making some records of blood results etc so you can both understand the progression or not of the condition and this will help you understand what is happening in your personal journey through cll.

    My advice to you both enjoy life to the full! Don't worry!

    You have our best wishes.

    Geoff

  • Just to clarify your comment on staging, we really should specify the staging system in use because there are four! Though it is obvious from the stage definition which is used :) .

    SLL: Ann Arbor (Stages I to IV with modifiers): en.wikipedia.org/wiki/Ann_A...

    CLL: RAI (Stages 0 to IV) and Binet (A, B and C with modifiers): cancer.gov/types/leukemia/h...

    Binet is more common in Europe, RAI is more generally used elsewhere.

    There's another system for CLL and SLL that categorises patients into low, medium and high risk, effectively an amalgam of Rai and Binet with a focus on the likelihood of the patient having health complications from their CLL/SLL. It doesn't seem to have caught on that well.

    Treatment at the lower stages was historically proven to not provide a survival advantage, but we are hoping that with the newer drugs, that may soon change!

    Neil

  • Neil,

    As usual you are absolutely right lol.

    As you say it was obvious,however, which was being referred too.

    Tried to keep it simple and stupid,however, for other readers the extra info you give is essential.

    Thank you once again for bringing this all to our notice.

    Geoff

  • Hi there "Son",

    From my own experience, I can only say that being at Stage 1 is "better" than being in the later Stages given the seriousness of CLL. I was diagnosed at Stage One 3 and a half years ago and have remained at that since then. My consultant told me that I could remain at this condition for the rest of my life which makes me optimistic as all my Watch & Wait blood tests have borne that out - my readings have only fluctuated slightly in that time without worsening.

    Keep supporting your Mum which I'm sure you do.

    My best wishes to her.

    Ian :)

  • Hi Diamond,

    Don't worry about asking questions - I have many as I'm still in the dark when it comes to talk of treatment drugs.

    I've never had any abnormalities in nodes or spleen and I'm happy to disclose my last counts to you - they may change next week but for now:-

    Haemoglobin g/dl = 15.6

    White Blood Count x 10 ̂9/L = 13.8

    Lymphocytes x 10 ̂9/L = 7.0

    Platelets x 10 ̂10/L = 20.1

    I hope these figures make sense to you and you can can compare with your numbers - let me lknow please

    Cheers ........ Ian

  • Good to hear about your mom. Keep in touch..

    Regards,

    BC

  • Hi prayingformum,

    Well all that praying clearly paid off because that's a good position for mum to be in with her CLL and long may it last!

    No need to keep that permanent worry hat on...she's at Stage 1, she's doing ok and could remain so for a very very long time!

    Great news and I hope its reassured her and the family a fair bit.

    Regards,

    Newdawn

  • Diamond and "Son" - This is a place where personal questions help everyone here learn. No need to apologize, though you might want to make sure your posts are marked community only for your own privacy and that of answering your original post. ( This can be changed if you posted without doing that).

    A good resource is cllsociety.org which has a list of links to reliable CLL specific resources as well as other good information. The LLS booklet listed there (which can be downloaded) is a good place to start, but just get into the introduction and basic vocabulary. Work through the other resources here and there. You both have time to do that, and much of the information about treatments is changing rapidly, so no need to focus on that in depth for now. Look at the big picture.

    I always recommend taking a recording device to appointments. When new, whether the patient or a caregiver/note taker, one is essentially listening to a foreign language while stressed. It helps to be able to go home and review exactly what was said. Also, start from day one getting copies of all labs and other test results and setting up a filing system for them. Much easier than playing catch up if you need them, and while you won't understand everything at first, you will start to see patterns as you learn more about things.

    Pat

  • That's really good news, we are all scared when you get the diagnosis. The community are great support to us all.

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