TO TREAT OR NOT TO TREAT??

Hello Everyone,

While I only post from time to time, I do read my HealthUnlocked almost as soon as I get the notification in my inbox and so I know there are amazing people on here, full of compassion and knowledge, hence I wanted to post and get your advise on the following:

So, I am 17p delete on W&W but the w&w is now more by me and not so much by my specialist, who recommends I should start treatment!

Well, somewhere- somehow I have become a bit of a "treatment phobe" because I've come to view treatment as the equivalent of getting on a Rollercoaster ride that "doesn't end well". Which I know is crazy because things do get better, (at least for a period of time) and obviously no treating will not "end well" either and a lot sooner.

Maybe is not that I fear treatment as much as I thought things had to look a lot worse, including the numbers which don't quite seem "horrible" just yet; just to mention a couple-- wbc=70's plt=106, hgb=11.0

When I was diagnosed (Jan this yr) I started with a wbc of around 34 (so I guess it has already doubled at 10 mos) but it spiked to 50 by March and stayed 50' for 3 month, then 60's for another 3 and now 70's.

My neck, armpit and groin ache from the lymphnodes but they're really not big at all. The ones I can feel are on my neck but they feel like they're pea size.

The mornings are difficult to get going and do feel tired during the day, but on quite a few days I might not even take a nap...(which I know can be a big accomplishment for some us, right?--lol)!

I have not gotten a cold since not sure when, I am however, experiencing some palpitations, abdominal-digestive pain and having difficulty maintainig weight due to said pain, which I dont know if its the gallbladder, an ulcer or what, but it has me eating less, cutting down on fats, dairy, meats, juices, sodas, etc, which, had I been overweight, it would've been perfect but not so much since I was already thin.

My Doctor says that the above will improve with treatment, but I also wonder if just finding/treating the digestive issue could be good enough because obviously, I would recover my weight, feel better and perhaps go a little longer w/o cll treatment??

So not sure what to do, are there specific numbers I should be looking more closely?

I hope I'm not being unfair but I think my Specialist doesn't like to give bad news; well, I say that because I found out I had the 17p mutation only after I asked him for the characteristics of my cll, so maybe I need to keep asking more questions as to why he feeIs I should start treatment, because he doesn't seem emphatic about it either (?), maybe it's just the doubling of the #'s ??

A while back I read some article (don't have the reference), where it said treating early could be a plus, especially for mutated cll?

Don't really expect for anybody to tell me to do treatment or not, since we're not Doctors (most of us, anyway), but maybe just thoughts, info, points of view, similar treatment fears, etc.

Anyway, sorry for the long-winded post and thank you all in advance for your reply.

Best Regards.

17 Replies

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  • Hi Que-sera-sera

    Sounds to me like a second opinion is called for.

    This would put your mind at rest and stop any misunderstanding one way or another.

    Whilst your counts are not the worst I've seen it really depends on how you feel and the troublesome symptoms you are suffering.

    In relation to stomach pain you will be aware that this can be due to an enlarged spleen which is a common symptom with cll. Could this be the cause of your pain?

    At the very least ask your doctor what criteria he is using for recommending treatment. I am sure Neil or Chris will post a link for you to study the protocol used for starting treatment so you are well armed with info.

    But if you can get a second opinion I am sure that would ease your concerns

    Geoff

  • I agree with Cammie. If you have questions and aren't sure about treatment and you don't feel you're current doctor is right about treatment, seek another opinion. It certainly won't hurt to do that. Are you seeing a CLL specialist by any chance?

  • I further agree, a second opinion with a CLL specialist in a CLL research hospital is in order. Whith 17p deletion you need to be under the watchful eye of a doctor extremely well versed in CLL and hopefully someone running clinical trials, so your treatment options are expanded.

    If you give us your city, we can probably make a few suggestions about doctors and institutions. You may have to travel, so look into the limitations of your insurance etc. Specialist will often guide your local doctor, so frequent visits are not required.

    Here are the iwCLL guidelines for CLL as mentioned before...

    bloodjournal.org/content/bl...

    17p- patients are special cases, you need a CLL specialist going forward...

    ~Chris

  • Not a doctor and understand your fear but I think most specialists look for doubling of the numbers, lymph node involvement, weight loss etc in determining when to treat. You have all of those and within ten months. If you can get a second opinion soon that would be great. In Canada it takes time to see a specialist let alone get to see a second one. I understand your fears they are real and we all fear the unknown. I think you might want to talk about expected outcomes and how quickly you can feel better with the specialist or the second opinion person. You don't want to be too far down going into treatment I would think. My thoughts for what they are worth. Quality of life is my goal. I don't want treatment if I am only am going to be miserable. If I can be better then I will give it a go. I realize there may be some pain for eventual gain when the time comes. But if there is no gain then I would stop treatment. The road is very individual.

  • Hi Que-sera-sera

    Excellent advice as usual given by others, the #'s ? you queried are lymphocytes commonly referred to here as ALC (absolute lymphocyte count). It is these that double but it is only one factor when considering treatment.

    Wishing you clear direction to end your confusion, and also wishing you well on this journey.

    Bubnjay1

  • Thank you all very much for your input and advise; we often have an idea in which direction we should go, but just need a little extra reassurance from family, friends and peers.

    Best Regards to all!

  • I have 17p deletion and though I did have a bad cold, I was pretty fine from diagnosis for about 4.5 months and then I dived. The reason they treat 17p earlier is things can spiral downward quickly which happened to me (I delayed treatment recommended start date by almost three months waiting for a clinical trial to open). Honestly, I didn't think I felt that badly before that and everyone kept saying you'll feel better after treatment. Now I'm on treatment and I do feel a lot better. I'm was also treatment phobic and everything is fine kind of person, but the reality is I forgot what it felt to be really feel good (which I do now). Yes, it's the beginning of a roller coaster ride, but at some point, you need to get on, strap yourself in and hold on for dear life literally. Hope this helps in a small way.

  • This really resonates especially because I also was recommended treatment originally back in June and I even got the medicine, put it in a drawer and have been dragging my feet, not wanting to take the plunge while hoping maybe my numbers would "unexpectedly" improve, but I guess that's not "quite" the way it works...So Thanks for replying.

  • The 17p deletion mean our body has lost ability to destroy cancer cells, so unfortunately, it would be literally a miracle to see the numbers reversed. I'm sorry you are part of this subset of the "club" but as I said, I'm really doing well thanks to the meds and I got over my pill aversion. I take 10 pills in the morning (7 are immunochemotherapy and 3 are support meds) and don't think about having cancer the rest of the day.

  • When I saw on your reply you were 17p and had started treatment I assumed you were also on Ibrutinib and so wanted to see how you felt initially and how long it had taken for you to feel better. May I ask also if you are able to hold a job? That's kind of one of the main things I wonder about, but I guess is different for everybody.

  • I am doing a clinical trial that requires frequent travel to Columbus, OH (from Philadelphia). It is obnutuzumab, ibrutinib and ventoclax. I am an entrepreneur with a 2 year old company and 12 employees with a pretty demanding work schedule, and have only missed work the day I was in the hospital thanks to my hemoglobin tanking to 5.5 right before the trial. Everyone is different, but after starting ibrutinib, I had all my energy back within the first three or so weeks. I do have flexibility because I'm self-employed but I would also be able to hold down a typical office job.

  • Oh yes ...I recall now reading your updates from each trip and for the most part sounded like you had no major issues and even now reading your reply, makes me feel encouraged you're doing so well with not just a job but running a Company!

    But yes, that's the trial that sounds really promissing, so I'm hoping for the very best for you!

  • IMHO I'd opt for treatment. I'm also 17p. Was only 6% at diagnosis but then accelerated. Platelets and hemoglobin dove and my neck was immense. Ibrutinib has normalized everything. I didn't want to start treatment but sometimes there is no choice.

  • Yes, one of the things that came up recently is that it is quite possible for the disease to jump from stage II right into stage IV !

  • I think many of us deal with this issue including myself. It's almost as starting treatment starts the clock running towards a very uncertain future. Also any unconscious fantasy that we have that we are not fighting this disease will vanish if we start treatment. I thinks it's normal human psychology. My determination will be based on how I feel. The more crappy I feel for extended periods of time the more motivated I am to start treatment. Supposedly medicine should treat the patient not the numbers so if this begins to impact your life in a meaningful way treatment is indicated. But for me it's hard to pull the trigger. It doesn't help that even the experts don't agree which treatment to start and that the longer you wait more insightful data may come out.

  • Sounds like you have not started treatment either and it's interesting what you say about starting the clock because that is exactly what I told my Dr. and he said that treatment doesn't start the clock...it "resets it"!

    (I guess he was ready for that one. lol!)

    I mean, maybe not exactly but I suppose we can choose to look at it that way :-)!

  • Thanks for that point of view. Interesting. Hope our clocks are Swiss and not knock offs!

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