After abandoning FLAIR Limbo land

Came off Ibrutinib/Riutximab FLAIR trail almost 8 months ago due to bad side effects, and was warned 2 months ago that more treatment may soon be necessary. However most recent check up showed only slight rise in lymphocytes and all my other blood results remain normal. Consultant very positive. Don't come back for 4 months. I know this is terrific but I am so aware that this could so easily change it is actually quite stressful. So do I just get back to work and forget about it. I find it so hard to make any plans for the future....as if I am tempting fate all the time. And actually right now I am feeling very tired and tearful and I don't know if this is reacting to this news, i.e. I can finally let go, after holding it together for so long, or if it is the dreaded fatigue returning.....

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  • Watch & Wait all over again. For me it's been a little over two years since diagnosis, and much of my time spent at work was used to read and dig into new information on CLL. Had my brain in a spin. I retired last August at 58....a mercy killing of my career. Now I have more time to do this (dig into new information) and other things like guarding my investments, working on and around the house, Hiking / Biking, and spending time with my wife.

  • Love the mercy killing of your career. I did the same at 56. Have returned to do some work but on my terms. I am enjoying life now.

  • Just to send some words of support and understanding romarin. I'm untreated but have always suspected post treatment might almost be harder to cope with in terms of uncertainty. The theme that runs through 'incurable' conditions is a feeling of being in active limbo.

    It sounds like you're doing well however and a 4 month interval is a confident one. It wouldn't be unusual to have a psychological response to this including fatigue so don't let your fears run amok. Essentially you are back to the Watch & Wait state and I'm sure you've been there and done that.

    Go back to work, just do whatever you would have done in the W&W period previously but until the trend is known, don't be making plans like sailing the world just yet. That's for a later date! :-)

    Hope things stay stable and your mood less agitated. Best wishes,

    Newdawn

  • Many thanks for your understanding and supportive reply. It really helps a lot. xxx

  • Not easy for you romarin. You've been built up and pulled back down, no wonder your feeling tearful.

    This CLL is a waiting game, never really knowing what's next. On bad days, I feel the rest of my life will be spent just......waiting. On good days? Waiting's not so bad. It's the way we handle it that differs, depending on how we're feeling on that day.

    Small steps. Just wait in the queue and try to look at the flowers not the weeds. Advice I find hard to follow some days.😀

    Peggy

  • Peggy,

    I might just print out your post and frame it. That is exactly how I feel. You nailed it. Awesome!

    Jeff

  • I look at both flowers and weeds the same way... 🌸🌹

  • Well even weeds can be a pretty sight. There's beauty in most things, if we look hard enough 🌸🌼

  • What most call "weeds" are actually curing herbs.

  • A weed is a plant in the wrong place...

  • I agree. When you are experiencing a LOT of pain whether in W&W or during treatment its definitely harder to cope. I`ll wish to just die and end the pain and the next thing I know is I`m glad to do my housework or spend a day with friends. Go figure.

  • Always always we have a choice. How to deal with it. Thanks for the reminder! xx

  • Feeling down and letting yourself cry now and then is not bad whether u have CLL or not. Just don't wallow in it. U aren't in control of ur disease nor is any one of us. Don't waste ur best times worrying about the worst times or u won't live. Will say a prayer u will feel more positive very soon.

  • I feel for you hope your ok..sometimes the stress can be so exhausting ...which can make you so fatigued at times and be blamed on the cll...I can speak from experience ....The consultant is happy to see you in 4 months so not overly concerned at the moment ...I know it's easy to say but try and cross that bridge when it's time to cross it ..there are other options ...what were the issues which made you stop the trial ?

    Take care

    Stewie

  • I have tried to document my experience here since diagnosis- check out previous posts by clicking on the flower image in the original post above....

  • I'm 59, post FCR (ended last August), MRDneg and back in W&W. What I've learned is that this quote is true... "Life is what happens to you whilst you're busy making plans", or, for us, "Whilst you're waiting, live life like you aren't".

  • For some of us - me, anyway - waiting was a lot more stressful than getting on and having treatment. Afterwards - well, I think we all should do as much as we're capable of, and that will vary.

    If you are feeling strong enough physically, I'd definitely go back to work - even if on reduced time. Doing something - pretty much anything - that stops us from focusing on worry about the illness is bound to be a positive move. And do make plans for the future - at my worst point, I stopped buying new clothes, as I didn't think I'd get to wear them much! Now, I buy what I need and don't think about all that. Get on with your life and enjoy it as much as you possibly can.

  • I think everyone would agree that in the midst of treatment there is support for every aspect. I didn't have watch and wait prior to treatment and am just getting my head round it post FCR. I read an article written by a psychologist which talked about finding my new normal, post treatment. Still working it out.

    It has involved taking temporary contracts for work. Not rushing into any decisions re other things. Though have booked a holiday for the whole of July with hubby!

    Take you your time to look at what normal will look like.

  • You get full rights to let go for a little time, even a quick wallow. The stress of recent months then the unexpected release is bound to have taken its toll. How about a bit of relaxing time doing what you used to particularly enjoy or even a day or two away? Then you can begin to get your head around how you want to enjoy your life now - best bits of your normality plus a little planning of what you want to do?

    It's not necessarily easy but you CAN do it - and you have the opportunity. All good wishes as you move forward.

  • Did you do FCR or ibruvica arm?

  • Ibrutinib. see all my previous posts for full story.

  • when I was on just ibrutinib I had to come off just shy of 2 months but evidently it was enough that my lymphocytes dropped twice and had normal range rbc numbers and stayed stable for about 5 months until my wbc doubled. So sit tight maybe you will have a stable period also. I just went on with my life with the" when will it start again" in the back of my mind. I was wiped out also from all the pain ibrutinib inflicted on me but I got some herbs and acupuncture and after a week I was better. I was wondering if rituxan would lessen inflammation side effects of ibrutinib- guess not from your experience. I`m on RX/ zydelig and I don't have those side effects when on ibrutinib-sigh of relief. I agree that it is hard to make plans on or off treatment. Go on vacation if you can. I actually knew without a blood test that my count went up-- when I have rushing noise in ears I knew. If you don`t have to go to work enjoy the time--do relaxing things. Hope this helps

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