Watch & wait....its a love - hate relationship

It's been a while since I've ranted on, so here goes....I've been watching and waiting since Jan this year, I had the typical diagnoses....I went in for the yearly physical and doc say's holy crap look at those WBC, you better go see a hematologist, and we all know how that story ends. So, into the land of W&W I entered checking in every now and then to see where the blood counts are. Since then, I've had a few bumps in the road, passed a couple kidney stones, FUN STUFF! was told I have basil cell cancer on my nose that needs to be removed along with an odd looking mole on my leg, going in next week to be carved up. I had a nasty case of Epididymitis...that was pleasant.... then lastly had some kind of bizarre cyst on my eyelid that had to be removed.... all fun stuff. I must say turning 50 really sucked! Now I'm scheduled for my next blood check on Friday and am kind of hoping my WBC have gone up from 16K on my last visit so I can as they say.... get on with it! But, then again I'm no fool, I know W&W is the best place I can be and hopefully stay for as long as possible. Since I'm 11Q del, unmutated and complex karyotype I know my time will come soon enough. That's when the real clock start ticking.... so I guess I should be grateful watching and waiting .... but I'm a little sick and tired of looking at my lumpy neck in the mirror trying to hide it with dress shirts and jackets. I'm a little sick of worrying about every little ache and pain I get, is it stomach cancer, pancreatic cancer or just a stomach ache..? Will my kids bring home some nasty bug that I'll catch and try to fight off for months and months....who knows. Since I am high risk and I do have a great CLL specialist, Dr. Sharman... I know what my treatment will be Ibrutinib, today anyway but maybe if I last on W&W another year or two it will acalbrutinib...I hope I make it, seems like a better drug. I'm guessing one of those drugs will last me 4-5, maybe 6 years and then on to the next....maybe it will venetoclax or maybe there will be something better by then...who knows. Maybe if I make it 10-15 years the CAR-T therapy will be my cure, then again maybe I'll get Richter's or some other cancer....it's such an unknown, I hate the unknown! Since I am only 50 years old with a beautiful wife and 4 really great kids I need to stay hopeful and I will. I will fight with all I have and I know treatment whenever it comes wont be all that bad, a little diarrhea here and there, possibly s few cracked fingernails, maybe an extra nap now and then... it could be worse. So with that said, I will see what my blood tells me on Friday and will roll with it either way, maybe it will be another year of watching and waiting.... FUN STUFF!

25 Replies

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  • I know it sucks. Learn to compartmentalize.

  • Oh boy! I know how you feel - been there - done that - but didn't get my Tshirt. But what I did get after 6 rounds of BR was my life back! Yes! W+W is crap but it's the best way - stay with it. Onwards & Upwards!!!!!

  • Hi garrick66

    Rant away my friend we all recognise the feelings that come over you when you get fed up of all those kicks in the butt we were not expecting. There are a few I know who will definitely be nodding their heads and sympathising as they go through scenarios similar to yours.

    You are in the right place to let it all out with your well received rant of frustration, humour and positivity. Well done.

    May your future be kinder to you, and us too

    Bubnjay1

  • Garrick

    Best of luck for the blood tests!

    Great to see the positive within the rant lol.

    Of course with a compromised immune system it is likely to be susceptible to infections and even secondary cancers but that is why watch and wait is so important particularly the watch where your med team can look for,diagnose and treat any interloper.

    Now the wait bit is sometimes very testing as you have demonstrated in your post. My way of thinking after first 5 years of w and w then treatment then 9 years of w and w then treatment now 18 months and counting on w and w is whilst I'm in this stage the research and new drugs that are being tested and used will hopefully improve any future treatment options.

    I see you have a similar outlook too!

    In the meantime enjoy your family and friends live life to the full and look upon your additional trips to the medics as little challenges on the journey.

    You never know if you visit the hospital enough you could get an invite to the Christmas party lol

    Onwards and upwards

    Geoff

  • garrick Im 70 years old this mth. my diagnosis of CLL and being on W&W worries me not at all. I also have Ankyolosing Spodyolitis witch gives me extreame pain every day. My spine is bent and fused as far up as my neck. I also have COPD, witch limits my breathing so far as going out to check the mail on days can leave me breathless. I have my blood tests but as far as worrying about them Im immune to that.

    The hardest part of my life is keeping up with all the tablets on time. the puffers i need to use 3 times a day , the streching to stop further fuseing of my spine.

    i know there are plenty of people much worse of than me and I'm greatfull for that. But My CLL is of no worry at all

  • Someone in another group posted about a newly FDA approved med. for Ankylosing Spondylitis. Do you know anything about it Brad?

    Thanks.

    Pat

  • Hi garrick66, I'm totally with you on this as I know so many others will be. I was diagnosed at a similar time to you and of a similar age. I feel I have been very positive since then but the last few weeks for some reason have really been difficult and mentally I feel I just need to scream and rant, doesn't get you anywhere but often makes you feel a bit better in the short term. I suppose it's the 'not knowing' and feeling it's all out of our control that really gets me. Watch and wait, what a great title when you have been told you have cancer! Well I don't like watching and I don't like waiting but hey ho! that's what we have to do. It's also for me, as you that recently my bloods have stared to drop sooner than I had expected which was a bit of a shock, and these moles, what's that all about!!! Still hopefully we are in good hands and when I look at some of these programmes or news on TV I am reminded that there are many worse of than me and that helps me get my positive head back on. Well that's my rant over and good reading your post as also reminds me that I'm not on my own with this frustrating condition. Good luck with the bloods and life in general

    David

  • I try that - there are so many people worse off then I am - but some days that just doesn't work!

    Virginia

  • Good luck on Friday! I have my bloods this afternoon.

  • Wondering if Dr Sharman maybe thinking acalabrutinib plus venclexta as possible treatment?

  • Garrick glad u can vent. It is important. It is November. We all find it tougher then. I am a doer and w & w is not easy but better than the alternative. We understand your frustration. Friday's results will be easier now you have let the feelings out. Let us know what gives.

  • Yep, all in the day of a CLLer. I also have had basal cell carcinomas removed, last November a benign cyst on the eyelid, etc. I have all the little idiosyncrasies that CLL brings and yet I look forward to each and every day. It's good to blow off steam to those of us who understand. Now get back to enjoying those beautiful kids and lovely wife. Don't let CLL define you. Let CLL be the catalyst that forces you to look forward to each new day. Worry won't change the things to come.

    Kindest regards,

    Sally (USA)

  • I completely understand. You don't want it to get worse, but you want to feel like you are doing something about it. I've been right there with you, waiting on the results and part of you hoping for it to go up enough for treatment or just to validate the fact that you really are sick. And the the other half of your brain is telling you "are you crazy??? You don't want it to get worse". Your ranting helped me to understand that I am not the only one with this twisted logic!!! Thank you!

    BeckyL

  • W&W can be rough if you're a "get it done" kind of person. I was a similar age at diagnosis (47) with young kids, and the worrying was awful. Now it is like a cycle, similar to the grief cycle. When something changes, or my labs are looking worse I seem to repeat the cycle of denial, anger, bargaining, depression and acceptance. Luckily though, each time through, the cycle seems to go faster and acceptance seems to come sooner. After all, what are the other options? I find focusing on what I can do, rather than things that are out of my control give me peace. Good luck on your journey Garrick, we are all rooting for you!

    ~Kim

  • Hi Garrick,

    I think we all know how you feel. I have 11q and unmutated as well and I'm a type A personality and HATE, HATE, HATE this 'worry and wait' but I guess everyone is right - it's better than it getting worse. I was only diagnosed in February of this year so we are both pretty much in line with each other - although I am older than you. My husband and I just celebrated our 50th anniversary and I was so hoping to make that and we did. But like you - since my dx I've had squamous cell carcinoma, basal cell carcinoma just dx, and during my mammo 2 weeks ago I told the tech about a nodule and it turned out that there were 3. So I'm on recall for that in 6 months to see if anything there changes - more 'worry and wait'. I'm a patient of Dr. Weirda at Anderson and saw him on Apri 5,l 2016 and at the time had no symptoms and was told to come back in one year - unless of course something changed. At my physical this week my doctor told me that he would like to suggest that I see Dr. Weirda every 6 months. I wrote to his nurse and told her what my primary said and she said that after Dr. Weirda reviewed my last labs (that I get done at my primary office and faxed over to Dr. Weirda) she would let me know if he wanted to see me more often. I can pretty much do anything else that I want to do and don't feel sick but with every ache and pain it makes me wonder. My family also is oblivious even though they know. I don't look or act sick so I must not be sick. I hate this. Ok, I'm off my own soapbox for now. Please let us know about your blood work on Friday. Best of luck to you.

  • Well said my friend I feel the same exact way I too was diagnosed the Christmas I have been through three hospitals now and MD Anderson just got rid of my college is moving to another one man I'm just tired like you said every love everybody so I understand

  • I knew there were more like me out there in the land of W&W.... thanks! I feel a lot better knowing there are others feeling the same way, not sure why but it helps. I can say I'm in a much better place mentally now than the first 2-3 months after being diagnosed. perhaps even as recently as 2 months ago.... every day gets better. Although, I do like to keep up on the latest and what's happening in the world of CLL.... it's kind of a sick obsession. Nonetheless, I really appreciate the support and knowing others are in the same leaky boat. After my blood tests and mtg with Dr Sharman in December I will fill you all in. I'm sure the good Dr will have the latest updates for me and what he recommends for treatment when my time comes. When I met with him in July he said if he were to treat now it would be with Ibrutinib alone...however he did say the acalbrutinib was like Ibrutinib but better! but since it's only in trials for now he couldn't recommend it..... so maybe when my time comes that will be the drug of choice or maybe a combo treatment, I don't know. I'm hoping he has more info for me in December. I know he has a trial underway for the acalbrutinib so I am grateful to live in Oregon fairly close to his practice. Thanks again....

  • Good luck! One thing I have learned in the last 2 years, is that I can deal with anything! Just take one step at a time. :)

  • I feel your pain and with me being only 35 and in the process of starting my own company, I wonder so many times if I should even bother. The unknown is maddening.

  • Yes, you should start your own company, and do whatever else you desire too. If you think about it, the "Unknown" is always there. People die everyday in fluke accidents, and other sudden ailments that they had no way of knowing they had. Whether you have 1 week, or 50 years you need to be living your life as best you know how and doing what you want to do as best you can. CLL has taught me to live every day to its fullest. My Thoughts and prayers are with you.

  • Thanks Pat , Yes both my sons are doctors And i did have a great specilist looking after my Ankyolosing Spondyolits I was put on a drug called inflictimab This is used to Knock out the immune system and in so doing help with ankyolosing spondyolitis . It helped for near a year but with a weakened immune system I contracted virus pnemonue I was in a coma for 10 days My family were called with the prognosis I was going to die. Im writing this so I got though it but left me with chronic lung problem COPD. I take a coctail of drugs to treat COPD, ankyolosing spodyolitis and it's pain. Sorry for spelling mistakes but at 70 years the mind is weak in that direction some how.

    Brad 7

  • Luke, even being so young the silver lining is there are newer treatments available and more on the way, this keeps me going. I have a great specialist who tells me he is certain there will be a cure within my lifetime and 'm 50 so there is a lot of hope to be had. Cancer doctors don't just say that to make you feel better. I too am just now buying out the current owners of the company I've been at for over 25 years, it's a scary prospect, especially in our shoes. there is a quote from a wise man named Good buffalo eagle who talks about walking forward in life not backwards...it's very profound. I've attached a link not sure it will work but worthwhile. If it doesn't work google Good Buffalo Eagle and you can find it. We are all on a journey and it no matter what our path is, it doesn't make any sense to not keep moving forward and greet our adversity and triumphs head on. that's my view anyway... good luck in your new venture.

    bing.com/videos/search?q=+g...

  • Thank you for the words of encouragement. I use to never doubt myself and had a ton of confidence until my DX. I need to get into a different frame of mind. We all have a lot to live for and I too see a great specialist Dr Keating at MD Anderson, he is also confident there will be a cure in the near future. Until then we must keep the faith and as Good Buffalo Eagle said "keep moving forward"

  • Well it appears I get another 3 months of watching and waiting....hurray! I really am happy I know stable blood tests are a good thing in my position, here is what my results were today......

    WBC 16.7, RBC 4.83, HGB 15.2, PLT 204, ANC 5.3, ALC 10.6, all others were rather normal.... so all seems Ok for now. My LY% was higher than last time at 63.2% and neu % was 31.3% which has me a little concerned but I know it's all about the absolute counts not percentages...I haven't quite wrapped my brain around that one yet but I understand those are the numbers to watch. I am grateful to know my treatment day is down the road at least another 6 months so I will celebrate with the finest Canadian spirits made..crown royal! those Canadians know what there doing! maybe I'll have two.....:) cheers! it's a great day to be alive and well in the great NW.

  • Good news😀

    Peggy

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