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CLL Support Association
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Anxious, worried, and sad

I am the mother of 3 and 48 years old. I was just diagnosed on 5/27/16 and am sick with worry and anxiety. Just wondering how long it takes to finally accept this news and will I ever feel happiness again. At this moment, I don't feel like I will.

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Learn what you can to talk to your doctors and then try and forget it. Will never be forgotten but if symptoms allow - you will be able to live well with CLL.

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Oh bless you. It is such early days for you and I feel every bit of your pain for I was just like you. Please please believe me, it WILL get better. The fright completely took me over but with the knowledge I gained from the wonderful folk on this site and a very understanding Dr, I got through it and so will you. Yes, it's not something to be happy about BUT there is so much out there for us now. Ask any questions here, someone will have a helpful response. Give yourself time to come to terms with it. Learn the basics, don't google too much. I wish I could fast forward you a few months. It's not easy but you will LIVE with this. Sending a big virtual hug to you.

Peggy

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Peggy,

Thank you so much for your encouraging words. It's nice to know that I will eventually feel better. Hope you are doing well.

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Hi Kamsteronovitch,

It's so soon after your diagnosis which no doubt came as a shock to you and perhaps you were psychologically unprepared for it. At this stage you will feel rocked to the core and very afraid.

I've been diagnosed with CLL for 4 years and was 6 years older than you at diagnosis. I remember the days, weeks and months immediately after it like an emotional storm. I had no idea what to expect and it created a fear in me for my future and that of my family. Hell, I almost felt like I should be marking the days off the calendar. My stomach knotted, I felt exposed and vulnerable and imagined that I'd been taken over by some unknown and unpredictable condition that might kill me at any minute! I was sure I'd never feel a moment's happiness and peace again. But you know what, that was an entirely normal response to a life changing diagnosis just as it is with you.

Someone had changed the old rules of my life but I didn't know what the new ones were yet. The blueprint I thought I had for my life had been scribbled on, pages torn out and I didn't know the ending.

Four years on, the sheer terror has been replaced by acceptance which has come out of greater understanding. The raw, paralysing fear has been replaced with a sense of purposefulness. A belief that I can deal with this and ultimately not let it spoil my life and that of my family. I'm not minimising this condition because in reality we all experience it in our own unique ways and I've been fortunate that my brand of CLL has taken a meandering and not galloping speed. It hasn't been without incident and I'd never pretend that a life changing condition doesn't change our perspective. Truth is, it will always be just a heartbeat away from your thoughts but there's no reason it should rob you of future happiness in its wake.

My advice for this early stage would be;

Calm yourself, take comfort and support and share your fears with your partner.

Disclose only to those who need to know at the moment. This can be a condition which lasts decades and there's plenty of time for that when you've acclimatised to it.

Make sure you have a specialist you can trust and work with. Learn about CLL but don't rely on dubious internet sites. There's a wealth of information on here to steer you and a treasure trove of wonderful people who can inform and support you.

We have all felt your fear and uncertainty and are happy to help you anytime you need it. We can't stop you suffering but can bring some balance to the fears behind the suffering. CLL is on the health radar now and there's such a massive range of treatments should you ever need them (and many don't). There's no immediate fear, no immediate changes and no reason not to look forward with optimism.

Warm best wishes,

Newdawn

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Newdawn,

Thanks so much for answering. I definitely feel somewhat better.

I found a really nice oncologist in my hometown and also got a 2nd opinion from Dr. Burger from MD Anderson and they both agreed I am in stage 0, with low risk factors. I still can't keep myself from worrying constantly. Just hoping it gets better sooner than later. I would rather not have to take any kind of anti anxiety or antidepressants but some days I feel that may be my only hope to get through the day.

I have definitely made the mistake of googling too much so I'm trying to stop.

I'm glad you are doing well. Thanks again for replying.

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"Dr. Google" is a fear-inducing busybody. I was diagnosed last September (at a similar stage) and quickly learned to limit myself to this site and one other; so much out there is outdated and unhelpful.

I was simply petrified at first, but can now truthfully say that I often go days without thinking about CLL. Having a knowledgeable CLL specialist is key, as is taking good care of yourself.

Hang in there; it will get better - I promise!!! Hugs!!!

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Dr. Berger's office on my Dr I live in Houston I was diagnosed in December

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Hi Kamsteronovitch,

Oh how I feel your pain, and fear. I am also a mother of 3 and I was diagnosed a year and a bit ago and for me the biggest fear was for my children. I lost both of my parents too young and I didn't want to do that to my kids. Everyone needs a mother. But the days go by, you gain more information and your new reality begins. I'm still scared, but not all the time. And I still worry about my future, but not all the time. And I'm trusting that in time I will get better at living well with Cll. This site is a great place to go to for support and information. I am even beginning to see some silver linings in learning to appreciate the days that we do have and learning to live them well. Hugs to you,

heather

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Newdawn what a cracking reply as always and I've just read it three times myself as it hits all the buttons, certainly for me as you know I am still in the early days of the issues you describe so perfectly. Kamsteronovitch this site has been such a great help to me and so far has answered every question and fear I have had to date. I would echo the point about staying away from doctor Google!!! It's the replies such these on this thread that give me the strength to get through each day especially the days when I'm still struggling to get it all into context. To know from others who are going through the same rather than other people offering what I'm sure is well intentioned advice is invaluable. I hope you come to terms with things soon and can move forward. Keep in touch

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Beautifully said Newdawn.

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My biggest problem with CLL is the constant tiredness. I've always been busy doing something and now I'm lucky if I have 2 good days out of a week. My nodes swell and are bothersome but not having to take any meds yet. I do use oils like frankincense. Has anyone else tried them?

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It takes a little while to accept. What you finally realize is yes your going to die and so is every living animal. You have CLL which many peope live 20 plus years with without treatment. Hang in there, whatever the plan God has for you has not changed and you more than likely will out life a lot of people that do not have CLL. My uncle passed away at 77 with CLL not from CLL. I am soon turning 49 and plan in beating my uncles 77 years. Best of luck and stay positive.

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Thank you!

I will soon be turning 49, as well. How long have you been diagnosed?

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8 months ago and no symptoms.

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I was 36 when I was diagnosed 11 years ago and like you I felt like I had been hit and beaten. To be honest it took me a good few months and during that time I had some very dark says. I felt like I had become the disease and that I had faded. I took all available help I could find. Yoga therapy, counselling, a few weeks off work, talking my feelings through, long walks etc. As others have said it does get better and while most days are good I still have the occasional wobble particularly around hospital visits. My cll is now at the back of my mind rather than a beacon at the front pushing all other thoughts aside. It will get better and this site and the sensible people on it will help. But there is no set pattern to follow. Let your brain and heart deal with this in the way they can and don't feel bad about feeling bad - it's all part of the process of feeling better. Hold in there and joy will return I am sure. Take care and stay healthy.

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Thank you so much.

I will try to have a more positive outlook.

Good luck to everyone!

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I was diagnosed last year aged 48, and I am a Mum of three children. For me the key was finding a specialist I could trust. I have that now. It sounds like you've done really well and you've already found someone. It's such early days and such a lot to take in. And all the time you're thinking of other people's feelings. I know you're going to feel better in time. Hang in there, you've already found this group and I think you're doing really well.

With my best wishes,

Nic

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Hello

Sending you all my love and hope that very soon things will settle down for you .You will I know get your head round all this .Just take one day at a time .Im not going to pretend you will forget about having this decease but I will say like others you will learn to accept it .

There are so many people here that feel your pain and fear and will help in any way they can .

It may be many years before you even have to think about treatment and you may not even have to have any

treatment at all .

If you do ever need treatment it's not all bad you know .

The new treatments out there are so much easier to tolerate ,less side effects ,and there are many new ones in the pipe line too.

Try not to think too hard about all this or you will drive yourself mad .(I know I did I was so frightened it was in my head twenty four seven )

i would wake in the morning and start thinking about what the day was going to bring and imagine myself into all sorts .

Try to just take one day at a time ,enjoy your family and each and every day .

The sun will come out again for you just you wait and see .

Brenda 🌺🌺

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Hi, my husband was diagnosed in 2013. He was 42 at the time as fit as a fiddle and this news completely knocked us for 6 , we had some very dark times but this site was invaluable to us. He had to start treatment straight away. My gosh when I think back to those days ... Can't say anything other than I understand the emotions / fears you must be going through however 3 years on and he's doing great, he doesn't come on here so much these days because he's getting on with life and enjoying every minute (too much sometimes πŸ˜‚) I never thought we would be happy again but we are, I'll be honest it's always there in the back of our minds but it does get better I promise, I can't give you as much support as he could because I am not the one affected but I know he would gladly give you advice if you need it, he got lots of advice from people on here and would love to help anyone in the way he was. One of the hardest things was telling the children but like I am sure others will echo things like this make you and those around you so much stronger.

My husband is a firefighter and he's been back to full duties for quite some time following treatment and has in that time saved a number of lives himself! Its almost like people have forgotten he was even ill now

I could ramble on for ages so I guess I'll stop there but I send my love & support to you & your loved ones and the offer is there for guidance / information should you need it

Lots & lots of love xxxxx

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Thanks for sharing your husband's encouraging post treatment experience. You've given hope to the many members who read an imbalanced view of health challenges from those seeking help and support, which is not countered by those who have gained their lives back sharing their good news.

Neil

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If we can help anyone we would I know my husband would be happy to chat anyone through their difficult times, likewise I know this site is invaluable for partners of people diagnosed so I'm always happy to provide help and support. We are no way experts in treatments etc but our journey was through FCR for 6 months xxxxx

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Hi Neil....I was going to reply to this post but not sure it's locked?

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I so feel for you! It's as though someone has stolen your future and your happiness. I was diagnosed 3 1/2 years ago and can remember the mind numbing terror when I was told I had cancer. I researched all I could about the condition and was determined to be my own expert, having to train my GP and my haematologist .

3 years later I have calmed down considerably and am looking forward rather than worrying about what might happen or indeed what probably will not happen. I re-evaluated what was important in my life and have recently applied for early retirement (at 57) as quality of life and family and friends are more important than using all my energy and reserves in a job where the pressures were mounting on a daily basis.

I told the people who I felt needed to know, be careful however as someone at work shared my secret and I got comments like " you look fine, not like a cancer sufferer". I have not told my elderly in laws as I know that they will worry non stop so this is a big secret in my family. If I receive treatment I will decide then if the time is right.

NewDawn's advice is excellent and you should give yourself time to let this information sink in. There is life after diagnosis and it is good! 🌷🌷🌷

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Hi Kamsteronovitch,

I was told 6th May I had CLL, reading your post and all the kind replies, it makes me realise I am not alone.

We all have different lives , but now share something which to a greater or lesser degree turns our worlds upside down.

The feelings you describe mirror mine and clearly many others have travelled that path too - and more like us are starting or have yet to start.

Having visited my GP with what since May I now beleive to be "symptomatic CLL" (Headaches, terrible fatigue and glands up), for over 2 years - but very low levels on Blood flow cytometery etc. It was almost a relief to be given a reason for it. But then again...what does that diagnosis of CLL actually mean......?

There are all those questions about "Work, family, life, plans and the future etc etc". What does it mean? Its an individual journey , I realise that and we make it the best way we can . Clearly its good for us to share and recognise the journey that others before us are happy to share .

This forum is magnificent, the advice wisdom and knowledge has helped me immensely and this morning for the first time I have had to post. Your heading struck a chord.

I am not out of the woods yet, I cant even see when that will be but with the "HU resource... the community of CLL/SLL" I know it will come. I wanted to say to you in particualr and to all in general thanks for sharing and thanks for being there :-)

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I was diagnosed about 3.5 years ago and have 2 kids (then 10 and 12). Like you, I suspect my CLL is Stage 0, but that got masked by an AIHA complication which did get serious....I did wonder if the end was neigh. Got though that and am now feeling better than I have for years.

However, you don't have this horrible complication! I found learning about CLL really eases the mind - at your Stage 0 you might even never need treatment! Even if you need treatment, there are loads of new ones coming that appear to be transformational. I think of CLL as going up a set of stairs....as you near the top you get treatment to bring you back down to the bottom, so you could well never reach the top! Currently, you are lurking near the bottom of your first ascent and even better you are probably not moving up: so you have ages before you need to be 'reset'.

I also found the kids' general enthusiasm for life and focussing on short-ish term goals has enabled me almost forget I have any disease and life is back to normal....

Take Care

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Hi, Oh my goodness, I feel your pain! I am seven months after my diagnosis and I still think about this damn illness every day. At first I thought I would never feel the same again, (and in truth I think you will probably be a slightly different person than you were before diagnosis) but life does go on and it does get easier to accept. In hindsight I wish I hadnt told everyone when I was first diagnosed, but like most people I thought I was just going to die there and then! People dont understand this illness (and why should they), they just hear what they want to hear and although you tell them time and again that you may never need treatment, they still ask how the treatment is going!!!!

You have to look at what you have in your life to be grateful for, the love of your family, what you have personally achieved. None of us know how this is going to go for us, but then we didn't know before what our fate was going to be so in a way its no different.

My specialist told me in my last appointment that as I am fairly young (55) I will probably need treatment at some point but that treatments are so good these days she will probably just wave a magic wand over me and I will be ok. It was a flippant remark but it made me feel so happy.

Stay strong, hug your family and look forward to a lovely future xxx

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Your post took me back two years ago. You will find your own way to deal with it, however there are some wonderful posts here.

My doctor warned me that with such news, there are two most common responses and the choice is ours: to become bitter or soften. I softened. About 4 months after diagnosis, I began (and continue) to seek out beauty in the simplest of things and ignore time-wasting politics and others' bad behaviour. I was absolute that CLL would not define me. I decided that it was my doctor's job to look after the CLL - he knows more about it than me! My job was to get on with my life. Yes...there are bright days and some days that aren't so sunny. On those days, I 'spoil' myself, watch my favourite tv shows and eat as much popcorn as I darn well please. I call these my 'Eeyore' or 'Princess' days. At 47, I'm well beyond 'princess material'...but who cares. Sometimes, you just have to put yourself first.

Your diagnosis has the potential to add to your life once you take control and put CLL firmly in its place.

Sincere best wishes. You are among friends here. Keep posting.

Jules from Oz. x

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Jules - I love that bitter or soften idea! I also chose softening.

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Hello there,

I am 52 Disgnosed just under 2 years ago, have just started treatment ( some people never need treatment) at all!

You will feel so worried at first i was, but everyone here, is so knowledgable and wonderful

You will soon begin to come to terms with it,.

Besides their are some amazing treatment options coming through now.

I am on a clinical trial as we speak!

Stay positive, read and get informed, learn about your bloid work

And keep smiling! πŸ˜„πŸ‘.

All the best

Kelly

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You got this. With Stage 0 and MD Anderson at your side... MDA is ranked at the top in the world and the frequent news about new treatments is exciting. This site provides peace, daily solace and excellent support and information( new Dawn, Chris Dwyer and Aussie Neill are always spot on!!)

It will get easier to live with this information.... I was Dx'd November 2015- and stayed in shock the first 3 months while pretending that all was well. Please please make sure that you have a good support network; that you take care of yourself and find the slivers of happiness that life gives us. Rainbows, flowers, babies and puppies make us happy for a reason.

πŸŒˆπŸŒˆπŸŒˆπŸŒΈπŸŒΈπŸŒΈπŸ‘¨β€πŸ‘©β€πŸ‘§β€πŸ‘¦πŸ‘¨β€πŸ‘©β€πŸ‘§β€πŸ‘¦πŸ‘¨β€πŸ‘©β€πŸ‘§β€πŸ‘¦πŸΆπŸΆπŸΆ

yoga, exercise, dates with my husband and a little craft beer now and then definitely puts this stupid disease in the back of my mind instead of the proverbial elephant in the room!

Stay healthy and Namaste

🌻🌻🌻

Kate

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At age 42 I was diagnosed with cancer. I had four children ages 7-13. My best friend was a hot shower where I could cry and my kids didn't see the terror I was struggling with. I remember telling my daughter I had gotten soap in my eyes when she asked why my eyes were so red. Cancer did make me a much better mother. I was determined from that day forward I would raise strong kids with knowledge to do the things they needed to survive without me. They were able to cook, clean, iron, laundry, etc. at a young age. They are amazing adults and we are very close. Thank God Dr. Google wasn't around back then or I would have been a much worse basket case. I am now 64 and have 3 beautiful grandchildren. Worry didn't add an extra minute to my life but excellent doctors and wonderful strides in medicine sure have. You have received excellent advice from so many people in this forum. It will get better. Kindest regards, Sally

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Hi Sally,

Thank you. Have you had CLL for 22 years? If so, have you had treatment?

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I had adenocarcinoma 22 years ago and a CLL diagnosis 9 years ago. I have had treatment 2 different times. Seven years ago I received Fludaraben/Rituxin and two years ago Bendamustine/Rituxin. A five year remission with F/R was great. You would not have known I had CLL. I had a harsh reaction on Bendamustine after one dose, however I did continue for 5 more treatments of only Rituxin. My numbers are starting to climb again. I see my oncologist every three months now. I continue to volunteer, enjoy quilting, gardening, family and friends. I travel as often as I can but am very careful when traveling. I visited family in February in Illinois and dear friends in Florida in April. Yoga helps me keep my mind free of worry and my body strong. Only God knows when my life is over. In the meantime I'm going to enjoy everything in my life. CLL has been a blessing in disguise. I take nothing for granted. Everything is still new for you. You will make a few adjustments and get back to living. My prayers are with you. So glad you found this forum. So many kind and loving people dealing with the same thing you are going through. Kindest regards, Sally

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Thank you to all of you for replying and giving me awesome advice to just try to move forward and be happy again.

I know it will take time but I do feel there is some light at the end of the tunnel.

Good luck to all of you. πŸ’™

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I doubt if anyone receives this news with equanimity, and at first it is entirely normal to feel fear and to worry. Everyone's different, but it's probably better to avoid obsessing about it - try to live as normal a life as possible. Focus on your loved ones and interests/hobbies - don't think too much, or often, about yourself and the illness.

With any luck at all, it will be a long time before you need treatment - and who knows, it may even be a curable condition by that time! Live your life and enjoy it.

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It will ease but never go away keep busy as there is lots of new exciting treatment coming soon

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I was just diagnosed at Christmas I'm a 47 year old father of 1. The diagnosis really freaked me out for the first 6 months and depending what your counts are and what your biomarkers are we could settle in and just live your life there are many many great things going on in cancer and Leukemia at the moment so that's why I'm watching wait we've got time for them to develop a cure and the three of us doctors from MD Anderson are all without a doubt in their mind that in three years there will be a cure for cll.

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Dr. Google said I'd be dead in five years. That was 13 years ago and I'm still here and doing well. Start collecting all of your medical information - labs, scans, doctors' notes and filing them. You will start to see the patterns of your particular CLL. Also take a recording device to appointments or use a phone app. It really helps to be able to go home and review what was said, especially technical information. www.cllsociety has a good list of reliable CLL specific sites. Don't try to get through all of them now. Start with something basic like the LLS or LRF booklets. And don't try to master all of the treatments. By the time you need treatment, if ever, things will be very different. You can basically ignore most information that is more than four or five years old. There is new information coming out regularly about CLL and how to treat it.

You will find a lot of support here to get you through the down days and to celebrate the good ones.

Pat

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We've all gone through that initial shock! Yes you will feel happy again! Stay strong, we are with you.

Virginia

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I am glad you found this site! It help me so much when 1st DX . Gave me hope and answers. I was so depressed. Learn as much as you can and believe these people on this site. We are all on the same journey. Love and hugs too you

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