CLL Support Association
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Merrily's CLL

My doctor suspects a CLL diagnoses.

I am 64, good health, married and love life to the fullest

My general Dr referred me to a hematologist ( I chose to travel to Dartmouth Hitchcock , as this is where my husband was treated with his Mantel Cell Lymphoma) . I was able to see the same doctor. I have no symptoms other than a slightly raised lymphocyte count. I don't feel any real panic at this time but an anxious to get the "real" diagnosis. I have told my adult daughters and am not sure that was a good idea. How have others spread the word or do most save info for only close family?

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Ive only told my wife and brother and sister for the past 6 years. Have not told kids friends co workers. I see no point. Unnecesarily scare them. You could go a lifetime with no treatments. Also dont want my relationships to be focused on " how are you doing". Also dont want "sympathy fatigue" but im also a very private person. Just my approach right for me.

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Hi Merrily .. welcome to the group we didn't expect to join.

As for who to tell about your CLL, there is no right or wrong way ...

Personally, I didn't see any need not to let people know.

At diagnosis, the doctor asked if I would like to ask my son to leave the room ... ( Thinks - this is not so good ) ... I said no, it's alright, he's old enough to know how the world turns ... " Your blood test results show that you have CLL " .. ( Thinks - Bugger ! )

I have a couple of other things that concern me more ... So recently my GP asked how I was keeping ... I just said ... " I'm alright - it's just that my body's knackered " ...

That's my attitude, I told my family and friends that if they have colds/flu etc, that it would be practicle if they would stay away due to me having a compromised immune system ...

Nobody treats me any different ... my line was ... " We won't let a little bad blood come between us .... will we ? )

" good health, married and love life to the fullest " ... that's what we like to hear ... and being anxious is natural, we all remember 'the "real" diagnosis'

It's also good that you have a consultant you trust ... On here there are no stupid questions, so if anything is bothering you just ask ...

We all remember how it felt when we heard the word Leukaemia, and I certainly recognise the person in your post .. on here you are most certainly not alone with your CLL.

I was diagnosed with CLL stage 0 aged 47 in 2006, and have not as yet needed treatment. ...

stay well

ygtgo

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My understanding is that 47 is quite young for CLL! Thanks for the info!

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Such early days yet Merrily and as yet no confirmed CLL diagnosis. With only a slightly raised lymphocyte level, it could possibly be MBL (monoclonal B cell lymphocytosis).

I'm 5 yrs post dx and am still largely undisclosed which is right for me but doesn't suit everyone. It's understandable that may have wanted to share with your adult daughters and have their support but having lived through their father's mantle cell, they may over-react to your possible diagnosis. Reassure them that this is a chronic condition and at a very, very early stage. Absolutely no reason why you can't go on loving and enjoying life for a very long time before there are any issues.

Hope your CLL diagnosis isn't confirmed but there's great support on here should you eventually need us. Perhaps a good idea to restrict your posts to the community if this is your real name.

Best wishes,

Newdawn

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I told immediate family first (by email) so they could get over the initial shock before I spoke to them and then friends. I found it difficult to talk about Cancer on the phone at that time.

It is difficult for many to understand because people don't understand that we live with cancer and not die from it.

I call it a blood disease as cancer scares people. They think your hair falls out and you die early. NOT US!

My neighbours eventually got to know and were supportive throughout treatment as I live by myself. Yes. It could be years before treatment, so should others know? Perhaps not.

Dentists etc will need to know. You have a label now. Life will never be quite the same.

Many enrich their lives as diagnosis gives us a rethink. We appraise and renew.

You are at the start of a long journey it may be slow and uneventful or twist and turn but you will be looked after and one day there may be a cure.

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Hi Merrily.....it's very confusing at the first, isn't it? And you haven't even had your diagnosis confirmed!

My husband was diagnosed Feb16, completely out of the blue, just after he retired.

We told our adult daughters and two very special friends. We have since told a very few others. If I could change anything, I wish I'd found this forum before we told anyone. I fear we caused them upset and anxiety that could have been avoided had we know more about CLL.

Wouldn't it be wonderful if our specialists could hand out this site to all those they've just diagnosed!

I wish you many happy healthy days ahead!

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I so agree with you, I wish I had found this site before mentioning anything to my girls. There is no need to frighten them as there is no way they understand CLL, I'm just learning about it myself.

Thanks for your kind words!

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We told family and friends as soon as it was diagnosed. My adult children have been great, and each of them have been to a hem/onc appt with me and my husband. People have been very supportive and even my grandchildren know that Nana has something wrong with her blood that makes her catch colds and other nasty things very easily. They know to hug me around the body and they know not to get close or even come around if they are sick. For me, letting people know has helped a lot especially with church and social activities. My fatigue is severe at times. People know why I can't attend every single activity, and I don't have to constantly tell them why I can't do something. Also, I have told several people who then told me about friends or relatives that also have CLL. I have made some new CLL friends. For me it has worked well, but every one is different. Good luck!!

BeckyL

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It is a highly personal choice. Having a niece who is a doctor and a son-in-law who has a doctorate in microbiology when I told my family they both warned me about the need to avoid infections to which I have a definite susceptibility. Given that I am ur age and I have grandkids building their immunities and there are lots of colds and germs around I decided to tell those whom I would see often about my diagnosis. They then could be aware not to come near if they felt they were coming down with something. That together with becoming "Mrs Lysol. Wipes". has helped me be germ free since diagnosis in Feb 2016. I also informed my friends and relatives about CLL and that it was chronic not a death sentence. Both my niece and my son-in-law were very reassuring in the beginning as was the hematologist. I believe the figure is 60% of people with CLL die of something else but infections should definitely be avoided. My ten cents worth. Whatever works for u.

To recount something cute. I told my grandchildren that grandma has to be careful not to catch germs. I made my five year old granddaughter a dress last week. and when I was leaving her house she ran out after me and said "I am not sick grandma and can I give u a thank you hug. "

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Grandkids are great!

I don't regret sharing this with them but don't want them to worry. I will have to re-consider taking care of the little ones when they are sick....

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And let me tell you it is hard to stay away when you want to be with them and they are full of a germ. My germs hung on a lot longer before my diagnosis and I didn't know why. It has been nice to be germ free for a good while now. I would love to do what I want and say damn the torpedoes but I realize that is silly. I do where a mask now and then and attend anyway if someone has a cold at a family birthday.

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Morning - it's a tough call and I have been doing a lot of overthinking - but there it is .. we are all different and so are our loved ones so there's no right answer . I've been diagnosed stage 1 for a year and still haven't told my adult children. I live alone and just have a gut feeling that I'll know when the time is right. It's taken me this long to get my head round it and have some peace

Go well and try not to worry

Anne

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Thanks Anne!

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Hi, Merrily.

I too have struggled with this problem and have adopted a tailored response according to the person's capacity to absorb the news.

I did not tell my mother until i felt she was strong enough to take it. I told my wife right away. Together we told our kids but used "soft" words. I told my surgeon brother as clinically as I could. I had to tell my boss at work so that health insurance would kick in; in hindsight I wish I hadn't as colleagues did not cope well and I eventually felt isolated. Five years on from diagnosis, I tell my close friends but do not tell total strangers.

Something I noticed is that telling dos not necessarily attract sympathy or understanding. Some people are in fact scared and run away, some write you off while others over-compensate. Act natural.

I hope this is of some help.

Lapo

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That's my worry that people will not understand and conversations will not be the norm. I guess time will tell, kids needed to know because they knew something was not quite right!

Thank you for sharing

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I think "understanding" is on another level. I am not sure I truly understand my CLL.

In truth, communications will not be a one-off but an ongoing conversation as and when needed, mainly for your benefit so that you can get comfort from it.

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From day 1 of diagnosis I told people. I don't regret it. Every now and then someone will ask me how my health is but I don't think that people remember than I am a "sick" person. We told my son right away.- is he concerned - of course. Hiding the diagnosis would be very stressful.

Virginia

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Hi Merrily, I agree that there isn't a right or wrong way. I think a lot depends on your lifestyle and what's going on in your life and what you are involved in. For me, I'm actively involved in gardening and garden clubs so I felt I had to tell those friends so they would understand when I couldn't participate in something. It has worked for me and nobody has treated me any differently - along some that I rarely see do ask me how I'm doing. You don't have to make any decisions immediately so think about it a while and then decide. Welcome to our group!

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Hi Merrily I was diagnosed about two years ago and have told nobody, not even my wife. I know many will be very surprised by this but I know she will be devastated when I tell her and she has a very difficult time hiding her emotions so it will only be a matter of time that others close to her find out. My thinking is that I currently have a very slow progressing disease and am living a normal life and don't want to change her life any sooner than I need to. I also know that once I tell her she will worry every time I get a cold or slight fever. When the day comes, hopefully many years down the road, that I need treatment I will tell her of course. At times I do feel that I am being dishonest by not saying anything and do struggle with that but I see little upside and tremendous downside to saying anything right now. Of course this makes it much more difficult for me, going through this alone, so thank goodness for sites like this one.

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There doesn't seem to be any right or wrong, I do understand you wanting to protect her. I'm happy you found this sight as it would be difficult not expressing your feelings to someone. Sure glad I found it!

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Dear Merrilly. and everyone reading this:

I an 5yrs post dx, still on Stage 0 W&W, with only a lightly elevated WB count and some tiredness in the afternoons, and on the basis of my visits to the CDMX General Hospital Oncology and Hematology Depts where I have been treated since, and watching all the sick people affected by the hundreds of kinds of blood and other cancers, that I thank G-d that I got CLL and not any other much more serious sickness, since at 80 I was due for something, and as someone said close to 2/3 of CLL patients die of something else, whenever their time is up-

As to telling someone else, each case is different. In my case, I was open with a lot of people, and was surprised with a lot of people who were not even close, who flooded me with all kinds of attentions and kindness. I was certainly ery pleasantly surprised.

So count your blessings, even if they appear to be somewhat disguiss.

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I await the call from my doctor tomorrow to confirm what he believes to be CLL.

I do count myself very fortunate with this disease as I have watched my husband as he fought the fight to get into remission from mantel cell lymphoma.

Thank you for sharing your journey thus far.

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