Watch & Wait

Hello Everyone

I just wanted to say Hello, i was diagnosed with CLL 4 months ago, i am ( female & 50)

I seemed to be very relaxed about it at the time, but as the months roll by, it is almost always on my mind.

I am stage A, And know at the moment its early days, just difficult to get your head around it.

Not knowing whats around the corner if anything, seeing the consultant every 8 weeks with a visit due.!

will i be more relaxed as the time goes on i wonder?...

I was very tired at the beginning, but have discovered a love of Cycling, and go three times a week.

So the being tired has gone.

anyway nice to be part of a a nice community like this.!

27 Replies

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  • Welcome to the community, one you probably wish you were not in, however, here we are. You'll find support and experience based help here.

    In general CLL moves very slowly, so my key message is don't panic.

    Glad to see you found a new love as part of your journey.

    Rob

  • Many thanks to you Rob, yes quite right!

    It's a case don't panic Mr Mannering!

  • I was diagnosed three weeks ago and also was told to watch and wait. I see the Dr. again in January for more blood work. I don't have the tiredness but my was found because I have had swollen Lymph Nodes for three years. On October 29th they did a biopsy one one under my right armpit. It's all just rather confusing to me as I don't understand what it all means yet. The blood work confuses me and I have an appointment to see my primary Dr. on Tuesday. I am 66 and because of my Fibromyalgia which I have had for 27 years and all my arthritis aches I hope it all gets figured out so I know what I am dealing with. I am not worried about this and I have a strong belief in God and that helps.

  • Hello Carpenters52,

    Good to have you join us, though I'm sure this wasn't the community you ever thought you'd be joining..

    Yes, it is hard to get your head around it at first, though after a while, you sort of get used to it. It takes time and probably most of us never completely get used to it... But we learn to adjust, so it's not always on our minds..

    You say you're only at Stage A, and are seeing the consultant every 8 weeks. If things are stable, then I'm sure you'll change to longer times between appointments. Then it's easier to put it out of mind for a while, specially between visits.

    It's great that you've discovered a love of cycling.. and have the energy for it. Sounds great..

    We look forward to hearing from you again, and hearing how you get on.

    Wishing you well,

    Paula

    P.S. I'm just wondering how you were diagnosed? Was it a routine blood test that picked it up, or did you have some symptoms?

  • Hello Paula,

    it was picked up in a blood test at the Doctors.

    I had gone to see Him, feeling tired all the time.!

    Many thanks for your kind words of encouragement.

    Best wishes

    Kelly

  • Just like you mine was picked up with a routine blood test, I was diagnosed 6 weeks ago and have struggled with the news , but they are so supportive and informative on this site , I have now arranged some councilling with a

    Local support group, first visit next Thursday, maybe you could look into something like this in your area, I take comfort from others on this site that say in time it does become easier to put it out of your mind for periods of time, , good luck with next visit

  • Hello,

    Yes it's a real god send , a wonderful site! Everyone is so positive.

    Enjoy your first meeting next week, you can learn so much from everyone's different experiences!

    Best wishes

    Kelly

  • Stage A is miles from treatment...I sort of think CLL is like being in a lift and Stage A is near floor level. As it gets worse, the lift goes up, until you reach treatment floor, when treatment then sends it right back down. And over you start again.

    I too could not get it out of my hear in the first few months, but after almost 2 years I have periods of days when it is not in my thoughts (even having had a major diversion into AIHA and eventually spleen removal). So in my experience, you will get more relaxed! Enjoy life!

  • Hello,

    You have described it really well, that's a great way to think about it.!

    Hopefully I shall be where your at, 2 years down the road, more relaxed.

    Many thanks to you.

    Kelly

  • CLL is a "strange" illness. After almost 10 years I had my first treatment at 74: Rituximab+Leukeran. Only three times in stead of 8. No problems. How long it will last: never know.

    But every person with Cll has it own history: all different. So it is impossible to tell you how your CLL will be.

    The "good" thing is: probably there are coming very soon better treatments. So I see for you less problems in future than for patients about 20 years ago. Perhaps a medecine in the morning and nothing at all!? will be the near future.

    I think you can be very hopefull for the coming (50 or so) years!!

    All the best and don't worry!

  • Many thanks to you for your kind words, great to hear that in your case

    You managed a good ten years before treatment was needed.

    Very reassuring to have this wonderful site to come to.

    Best wishes.

    Kelly

  • I know just how you feel. I have been 'watch and wait' for five years now. You learn to listen to your body, and to feel comfortable about setting a slightly lower 'job' target [in my case for digging in the garden]. In the past year I have found it hard to throw off the effects of a persistent head cold and have been having a six week interval infusion of immunoglobulin to strengthen my immune system. Apart from the positive health benefits, it underlines what a good NHS we have and the extraordinary quality of care you get from professional staff.

    Keep strong and enjoy each day.

  • Hello there,

    Many thanks for your Lovely comments, and yes you are so right.

    I have had very little to do with the NHS really before this, and so amazed at the level of care given to everyone.

    Regards

    Kelly

  • Hi, I was diagnosed a year ago. I live in the US so I am at stage 0. In the beginning I thought about it all the time, but now it has receded and I don't think about it that much. I try to eat healthy and stay active. Keep up with your cycling. Its fun and if it makes you feel good, so much the better. This is a wonderful site, to be in touch with people in your same situation. You are not alone.

  • Hello,

    Yes you really don't feel alone with it at all, this site is such a wonderful revelation to me.!

    Your so right about eating healthy foods, it really does make you think about everything .

    Thanks for your lovely comments.

    Kelly

  • Hi

    I was similar to you although I was 41, this was 5 years ago, at the start I had a scan and a bone marrow biopsy. I initially saw my consultant every few months but as time went by he suggested I could stop seeing him and simply have my bloods taken every six months, he would see results. I did go through similar experience to you where I was fine and it was my family falling apart from the news at first, a few month down the line I dwelled on it and always wanted to know the answer 'When will it affect me?' which nobody is able to answer, but now I don't really worry, though maybe a bit apprehensive when I have bloods taken just in case there are any significant changes, but so far so good.

    Diane

  • Hello Diane,

    That is great news, the fact that you are 5 years down the line, and all seems fine, makes a huge difference hearing everyone's personnel experiences !

    Long may it continue.

    Best wishes to you.

    Kelly

  • Hi Kelly,

    A warm welcome to you! I was diagnosed exactly a year ago at 54 through routine blood work and continue on watch and wait. Life with CLL can be a roller coaster ride of emotions, never knowing what the next blood results will show and the nagging feeling of wanting to do something about the CLL but sometimes feeling helpless. I have learned to control what I can (healthy eating, exercise, meditation) and let the rest go. I too used to think about CLL every waking minute when I was first diagnosed. A year out now, if I must be honest, I still think about it every day but sometimes it is just a passing thought and no longer consumes all my energy. We need every bit of our energy to stay strong! This site has been a lifeline for me. The information and support here, as you have already witnessed, is amazing. Wishing you all the best!

  • Thank you for your lovely message,.

    Hoping I will where you are a year from now!

    I am over whelmed by the kindness of everyone on the site

    Such fantastic words of encouragement!

    Many thanks to you.

    Kelly

  • Thank you for your lovely message,.

    Hoping I will where you are a year from now!

    I am over whelmed by the kindness of everyone on the site

    Such fantastic words of encouragement!

    Many thanks to you.

    Kelly

  • I was diagnosed 2007 at 55 and I am still watch and wait. I ride a motorcycle and enjoy my grandkids. At first I thought about it a lot now not so much. It gets better and this site helps understanding this cancer.

  • Hello Kelly,

    I'm glad that you have been helped by the replies you have received and trust they have alleviate your worries to some extent. Each one of us embarks on a slightly different journey even though we are united with a diagnosis of cll.

    You are at the very start of yours (as are some others linked to this community).

    Mine started several years ago when I was diagnosed much further down the road than you - yet I still waited almost 5 years before treatment was required. And yes, there is still plenty of life to be lived post treatment.

    May your journey be long and smooth. All the very best to you and your family.

  • Hi, I was diagnosed about a month ago myself at 66 with CLL stage A on a watch & wait basis & I'm going back in 6 months. If I'm more or less the same it was suggested I could go onto to an annual check, as long as my health doesn't change, but I understand what you mean about having to get your head around it.

    Being on here though, gives good information, but it also shows what can happen & I feel for many on here are clearly going through it & battling with the condition a lot further down the line than us.

    For my part I'm following the Doctor's advice to keep myself reasonably fit & health, to try & avoid getting flu or shingles & taking a supplement of Green tea with a view to try & manage the condition, thus delaying progressing to stages B & C for as long as possible.

    Not sure how successful I'll be, but rather than dwell on what might happen I'm trying to focus on what I can do to try & manage the situation.

    Stay strong & try to be positive & don't dwell too long on the negatives

  • Many thanks for your kind words.

    I think you really do have the right approach to CLL, you do have to focus on the good things.

    Wishing you all the best.

    Kelly

  • Hi

    I too am in the same position as yourself and for many there is a pattern of initially being relaxed but as the time goes by reality kicks in.

    Exercise and a good diet seems to be important to feeling OK.

    I wish you all the best!

  • Hi Kelly I was on watch and wait for 4 yrs and then I got Flu virus. Which left my lymphatic system in disarray ie very enlarged nodes in axilla and neck. Which would not recede. So eventually after a course of cortisone which didn't really help I started very reluctantly on chemo. I had quite a lot of side effects to. And am still getting them 1 year on..so the moral iS....make sure you have your annual flu shot.

    Also make sure you enjoy these w&w years as you just don't know how long it will be before you need treatme to. Altho as previously said new drugs are in trials and we're hoping for chemo free medication in the not so distant future

    Sheila in fremantle

  • Hi Carpenters52,

    Having an incurable cancer like CLL is a bad draw of the cards but it is also an opportunity to explore oneself in a way that is deep and unique. If you use the mixed blessing of W&W to learn and strategize while honing the practice of gratitude the journey of your future life with CLL may yield rewards not obtained in an otherwise "normal" life.

    I call having CLL as "dancing with bear" the only way the dance can stop is when the bear stops dancing. The pace of the dance is different for each of us and its dangers can be offset by our ability to develop the inner warrior. We are all on the same quest but our paths can be quite diverse. The opportunities to slow and stop the dance of the CLL Bear have never been better and the patient who is knowledgeable has the best chance to survive a better person than prior to diagnosis.

    You have time to learn and friends here to help with the complexities you will encounter.

    May your path be well chosen,

    WWW

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