I just discovered this forum and I'm very glad I did.
I was diagnosed with CLL in February 2017 after a nose throat and ear doctor discovered some lumps in my neck in November 2016 while treating me for an ear infection. Before that, I never even heard about CLL. It was quite a shock for me. .I was referred to the cancer clinic of the hospital in Windsor, ON, where a very nice doctor took care of me. I was in stage 1 or a bit higher, so I was told w&w as the term is on this site. No treatment until it will get way worse, I was told. I got a second opinion from an oncologist in Amsterdam, The Netherlands. I always look for a second opinion when something serious happens to me and it has been quite valuable over the years.
My last check up in Windsor was in September and everything seemed fine, no worries.
Just this week, I discovered way more swollen lymph nodes compared to September. They are in my neck, throat, armpits and groin now. I also feel way more tires and non energetic as before. I also have a sore throat but I am not sure if that has anything to do with my disease. I immediately called the hospital if I could make an appointment asap, cause my next check up was booked for March 2018. Luckily they could squeeze me in for a cad scan next week.
I am very worried about my disease and my future with that regards.
I haven't done a lot of searching on the internet but tonight I was trying to find some answers and then I ran into this forum and I'm happy that I found it. It looks it's a source of honest information and experiences shared by people that are in similar situations. I will certainly follow all the stories her.
Thanks for reading and look forward to your replies.
Regards,
Jan
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Jan_Zon
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Hello Jan, This is the best place to be if you have CLL. Hubby is in WandW for about 5 months but looking back labs were odd in 2014. He is 70yo.
I have a son who is going to spend the summer in Amsterdam. He has lived in the Netherlands before and said “Amsterdam is the most beautiful city in the world.” I was quite surprised to hear him say that. He is bookish and doesn’t usually give opinions like that. Do you like Amsterdam as much too?
Thank for your kind words. I am convinced this site will help me coping with the disease.
I live in Canada but Holland is my home country and I still love it there. Amsterdam is a great city for tourists, I am more a country side person. My daughter lives close to Amsterdam and she got me in touch with a doctor in AMC hospital in Amsterdam. Only had a phone consultation so far but I hope to meet him in February on our next trip "home"
Hi Jan, I also live in Ontario. I have been to the Netherlands several times - one of my favourite places to visit. Your nodes might be enlarged due to an infection (your sore throat could be an indication of that) you are smart to have made an appointment to see your doctor. I was diagnosed in 2014 and my nodes go up and down. Try not to worry too much and see what the doctor says. You will find extremely knowledgeable and caring people here.
Thank you so much for your reply. I didn't know that the enlargement of my nodes could be caused by an infection of some sort. I also thought my sore throat was caused by the enlargement but it might be the other way around then. As I said before everything looked good until last week and when you can feel all kind of lumps all of a sudden I started to worry a lot I can tell you. Lets just hope for the best then. It's just hard for me to get a handle on all this. I just don't know enough about the disease but I've read so much good information on this site already, more then I ever knew before. What bothered me the most so far is the tiredness that you feel, some days worse then others but it doesn't feel good. I am a farmer and used to hard work but some days it's just hard to get going. But work is the best cure for that. The busier I am the less I feel and the less I worry.
Where about in Ontario do you live and what hospital are you going to ?
I think all of us here can relate to the ups and downs that you are feeling. Sometimes I feel completely normal and other times those darn nodes have a miserable way of reminding me! I live in Toronto and my specialist is Dr. Spaner. I agree with you, keeping busy and being physical is super important as is being in a good headspace. It took me a couple of years to really wrap my head around this whole thing but now I feel at peace with my diagnosis and proactive about my future.
Hello Jan, welcome to our exclusive club! I could feel your shock and pain at your diagnosis. It was the same with me 10 and a bit years ago. I had never heard of CLL either and when I heard the last word, leukaemia, my blood ran cold.
Anyway, now you have found this amazing website, please don't hesitate to use it for specific questions. Also the search facility is very good and will bring up past posts that may answer some of your questions.
I hope your appointment goes well and your mind is put at rest. All the best for a very long W&W time.
Hello Jan-Zon. Welcome to the family. As UK-Sparky says a great source of knowledge & friendship. I have catalogued my journey here from diagnosis through treatment to present day good days & bad. Please feel free to browse & I hope that it is of some help to you.
I already feel that I can make friends here on this site. I've read some other peoples post's and everybody is trying to help another, openminded and honest. I feels good to join the club here.
Welcome to the club you probably did not want to join. As you will see, this is a very good site for factual, patient weighted information. You will learn a lot about CLL just by exploring the posts, both past and present.
Just one word of advice. Find a CLL specialist to consult with about your condition. Make sure they specialize in CLL. The field is presently advancing so rapidly that you don't want to miss out on potential better treatments.
Thanks for your reply.I am happy I found this site and all the nice people on here to support each other.
My oncologist in Windsor is specialized in CLL but I hope to get a second opinion from a super specialized CLL doctor in Amsterdam. I go where ever I have to go.
Thanks for your reply. You are the 8th or so person that replies to my first post on here and I feel very welcomed and very comforted by what you people all told me so far. Complete strangers but it feels like all friends. This is unique
20 Years for you already, wow, you must have gotten used to it. I'm still fresh with this and have a hard time to get a handle on it but it'll come. Try to do my normal things, when busy you don't think about it as much.
Welcome aboard Jan_zon! My first symptoms were swollen nodes on my neck, armpits and upper chest on Labor Day September 2014. My first WBC was 28K and by early February 2015 they had risen to 120K. A lot can happen in a short amount of time. I've certainly had my moments of panic. I too am glad to have found this site. There is a lot of wisdom, support and experience of what it means to live with CLL.
Thanks for your reply. It is awesome to hear from all kind of people like you, complete strangers, from anywhere in the world, that write all these kind words to me. It's like we are all friends here.
I just thought I’d share my experience. I too am on W&W. I had actually gone to an ENT in hopes he would find something wrong because I wasn’t feeling well at all and no one seemed to be able to find anything wrong.I Think I shocked the poor doctor when he told me I didn’t have a tumor! I just broke out in tears! I had been feeling miserable, exhausted,“sore throat”, ears the only word to describe it is UGH! I was beginning to think I was crazy.... then one day a Doc at urgent care who had gotten to know me by name came to me with a pile of papers stapled together and said he wanted me to see a hemotologist. So off I went with my blood work and Finally was with Cll! No treatment, just watch and worry! That was 5 yrs ago. I still have a “ sore throat “which one of our fellow travelers once told me his neck nodes get swollen. I also get what I could swear are ear infections. When I was told by someone on the site he thought it was due to when his body was fighting off an infection it made sense. I have since noticed that for me, my symptoms coordinate with how much stress I am feeling. Yet late at night while lying alone in my big lonely bed I can convince myself I am at deaths door! Thank God we have each other. The difference between knowledge and wisdom is experience.! At least that’s what I have come to believe. Who has more wisdom than my fellow sojourners on this site? I felt crazy again the other day when I visited a new Cll specialist. I posted that night Am I Crazy? Not even my family understands this disease. I am glad you are here! I’ll be sending light your way as you visit your doctor!👼
I also suffer from a soar throat since last week and also experience the feeing of what seems to be an ear infection. At the same time, I felt a lot of swollen nodes and then you scream for answers: WHAT IS GOING ON WITH ME ????
It really takes a toll on your mood and your family members don't always understand it all so that creates even more stress and tension. And you can't get an appointment with your doctor on a short notice either. So all you do is worry and worry. When I'm busy, and that's quite often so, it's kin of OK but lik you said to, when yo lay down in bed at night, it comes to the surface again.
Thank God I found this site with all this friendly people.
Believe me I know how you are feeling .I was diagnosed in April 2015 and went straight into treatment in the May .
I found this forum by chance like you and it was the best thing I ever did .You will find the support and understanding here that you need at the moment .
Things will get easier ,you will see .
Don't worry on your own .There is always someone here that can answer your questions .
It is just so amazing to find out there are still people around that care. Where do you find that nowadays anymore ?
There are always questions popping up in your mind that can only be answered by people that had the same experience. I am sure going to post them on the forum and look forward to read the responses. Now don't HAVE t worry on my own.
Thank you again and if I could, I would give you a big hug.
The best site by far anything you ask on here someone will be able to answer ,even though some of the technical stuff is heavy reading and sometimes hard to understand ,good luck at your appointment .
I am also from Ontario and was dx 2 years ago at 45. As so many have already told you this is a great place for information and support, all the best to you.
Welcome! You will find lots of comfort, answers to questions, information....I am new to the site too. Has helped quite a bit. I am 10 years W&W and may need treatment soon. Going for second opinion before considering chemo. I was told I couldn't have any other treatment. Getting second opinion is so important.
I started with one swollen node on my shoulder around my 3rd year. Nothing else popped up till 2016. Woke up to find huge ones under chin and along neck. Felt like a freak. I saw my oncologist immediately. No staging....been almost 2 years since. Some got smaller, some bigger. My WBC is 200k.
My father had CLL, never needed treatment and lived to 94.
Till I see doc again in January, I am trying to enjoy the holidays and go about my days and not focus on my CLL. I have my moments of panic, but I know stress will not help me.
Jan - Another good site for you is cllcanada.ca Chris, who posts here, runs it. Good information, a list of suggested doctors, and the information is from the Canadian perspective (treatment options vary from country to country).
Thanks for your post. I sure will take a look at that site. It's good to find out what our options are here in Canada because that's where we live. Since we immigrated from Holland, I'm going there for a second opinion during our next yearly visit. I find second opinions always very valuable.
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New to the group. Should I worry concerning my latest blood results?
New to this!
New member
Im new!
Swelling by my collarbone
