Newly Diagnosed stage IV CLL/SLL 1/18/17

I'm less than a month in with my knowledge of diagnosis so very new to all this cancer language. Extreme fatigue for some time and swollen neck node presented in October. My blood work is fairly unremarkable but lymphocytes in bone marrow are 70%. Multiple neck nodes and supraclavicle plus axillary.

I've read about several who are "watch and wait". I will be starting treatment this week. My initial diagnosis was SLL. No spleen or liver involvement. My dr says my case is like most others "normally abnormal". As in it follows no rules 😠 Anyone else out there that started treatment so quickly after diagnoses?

I'm a 51 year old female with three adult kids and a husband.

14 Replies

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  • Hi jenxgen and welcome to a friendly, supportive community of members who wish they weren't here, but appreciate the knowledge and sharing provided here.

    While the majority of us do have many months or years in watch and wait, some of us do have the misfortune of having treatment started fairly soon after diagnosis. Unfortunately, a few of those would not meet the criteria for starting treatment based on the International Workshop on CLL diagnosis, monitoring and treatment (iWCLL) guidelines: bloodjournal.org/content/11... ), because we are assigned to a general oncologist or haematologist who does not keep up with the guidelines or the rapidly changing treatment options. Given you've had a bone marrow biopsy and presumably had a FISH test with I suspect a 'Normal Karyotype', i.e. the "normally abnormal" reference, you appear to have had a reasonably competent assessment.) However, for your own peace of mind, you may wish to ask for a second opinion if your specialist doesn't appear in these references (which aren't exhaustive).

    cll-nhl.com/p/cllnhl-doctor...

    cllsociety.org/toolbox/cll-...

    At the very least, your specialist should be able to say specifically why you need to start treatment, particularly given your spleen and liver are clear and you only have 70% bone marrow infiltration. Extreme fatigue is one trigger for starting treatment (but not that common) and it is reaching specific blood count levels, such as platelets or haemoglobin under 100, or lymph nodes exceeding 100mm or causing physical symptoms that are the usual triggers, or a fast doubling lymphocyte count with one of the aforementioned symptoms. Some of us have only started treatment when our bone marrow infiltration exceeded 90%, but the actual point depends very much on how rapidly our CLL is progressing (and not all of us have bone marrow biopsies before starting treatment). Seeing a CLL specialist improves your chances of starting treatment at the right time, not to early and not too late.

    I've made your post viewable only by members of our community, so you can share your specialist and where you live if you wish. That way you are likely to have feedback from other members who share your specialist, or can recommend specialists near you for a second opinion.

    I'm sure our membership would be interested in what treatment you are about to start too. Have you searched for other's experiences on your proposed treatment?

    Wishing you well on your CLL journey,

    Neil

  • Neil, is the size of lymph nodes 100 mm? Is that the same as 10 cm--I think I have read over 10 cm is an indication of progression.

    Sorry for my ignorance, but I have been more of a word person, not numbers and since we here across the pond did not use the metric system in my school years--my fuzzy brain doesn't even try anymore.

  • Yes nodes at least 100mm, 10cm or approximately 4 inches. From the Guidelines for the diagnosis and treatment of chronic lymphocytic leukemia: a report from the International Workshop on Chronic Lymphocytic Leukemia updating the National Cancer Institute − Working Group 1996 guidelines - updated December 2008 '4.1.3. Massive nodes (ie, at least 10 cm in longest diameter) or progressive or symptomatic lymphadenopathy'

    Neil

  • Neil - This is not showing up as locked for me?

  • Most people find their diagnosis almost by accident. You were already presenting symptoms which is why you need treatment. You've probably had this for years but it just wasn't noticed so youre concerned at needing treatment so soon after diagnosis isn't a concern......you've been doing the waiting but you just didn't know it !!! The best of luck to you...keep us in the loop as to how you get on.

  • Welcome to the group. Glad AussieNeil gave u a thorough answer. I hope you will continue along the journey with us, and that you find the information, support and understanding we can provide you is helpful. I am watch and wait but I know getting answers to your posts and feeling heard is supportive. Good luck with you treatment and will say a prayer it goes well. Keep us posted.

  • Zenxgen...I'm wishing you a successful treatment and peaceful healing. When you said, "extreme fatigue," oh, how I can relate, as I have been on W&W for 4 years and experience deep fatigue. You'll be in my thoughts during this time!

  • Hello Zenxgen

    Welcome to this great community where you will find the understanding that we all so need,friendship ,and support .

    Even though we have the support from our family and some friends they cannot begin to know how we feel with a diagnosis and for some of us to have to go into treatment just after we have been diagnosed with Cll .

    Like you I went into treatment within month of diagnosis as I had anemia,night sweats and bruising quite badly as my platelets I was told were also not good .

    I wasn't a member of this forum then and so I didn't ask for a second opinion ,just took the advice I was given .

    My treatment is Ibrutinib as first line .I was unable to enter the flair trial as I have 17p .

    All I can say to you is the treatment for me hasn't been without a few side effects but nothing that I can't handle .

    I would be lying if I said I never get low or depressed but when I put my sensible head on I just think how fortunate I am to be able to have this treatment ( and there are many more out there for us now ) unlike some folk just a few years ago who couldn't have any as there was very little available .

    I really do wish you every success with what ever you decide to do .

    Take care and stay strong .

    Brenda

  • Jenxgen, All of here on this site can truthfully say we know how you feel since we've all been there. I am still so new to it myself but have found the members of this site to be so very helpful and supportive and I look forward to reading new posts every single day. I pray that your treatment will go well and hope that you will keep sharing your experience with us. Best of luck to you.

  • Jenxgen, I wish you well with your treatment. I have just completed 1 cycle of FCR and found the advice and support on this forum second to none. Please keep posting your questions as there are many experienced CLL'ers out there who can help. Let us know how you get on. Must have been a real shock for you as it was for me nearly 10 years ago now. All the best, Holly

  • 100% see a CLL specialist prior to treatment. There are some gray areas with all of the new treatments available. A CLL specialist will have the latest data and know about trials that may benefit you.

  • You'll be in good hands with this group! Ask any and all questions. I'm newish as well (my husband has CLL). I don't have expertise the others have, but I do have big shoulders to lean on.

    I'm wishing you well with your treatment.

  • Don't start treatment unless you have seen one of the CLL/SLL specialist first!!! More important than you may realize.

  • I see you live fairly close to me. I've been seeing a really great hematologist oncologist, Dr. Weisenberger, for the 4 years I have gotten my diagnosis. She is a kind and understanding woman. We loved her to death. She is part of OHC and she visits offices in Hamilton and Fairfield. If I have a question, I'll call her office and either her staff or herself will call back the same day. Also a trip to Columbus to see Dr. Byrd is well worth the trip and time. He is a researcher at OSU that specializes in CLL. I have been taking Nuvigil for over a year for my fatigue and what a difference but you cannot have any signs of heart trouble when taking this. I'm going to update my post on Nuvigil.

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