Hi I'm David and I have recently been diagnosed with CLL, a great shock at first but I'm gradually getting my head around things due in no small part to the support network and online community. I am in the early stages and like many people was only discovered after my blood tests, felling a little tired so went for a health MOT as I hadn't had one many years. I now have appointments with my consultant every eight weeks which he says may increase in length after the first few if things stay settled. Reading all your info and watching the excellent videos I guess the best advice is look after yourself, carry out an active life and enjoy life as much as possible! Any other advice regards living with CLL is greatly appreciated
David
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Salohcin
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Sorry that you have been diagnosed with CLL, but happy that you have found our community.
Take your time and browse through the site, and I hope that you make good use of the goodwill of the members on here if anything is bothering you ... there are NO stupid questions, only good people who are more than willing to help.
I was diagnosed with CLL stage 0 aged 47 in 2006, and have not as yet needed treatment. ... my experience was of being checked every three months for a couple of years, then it became every six months, and now every year. Others on the site have reported the same pattern.
Of course this is a worrying time for you, we all can relate to the ' shock ' of being told that we have CLL.
There is a lot of experience and goodwill on this site, I hope that you make good use of it, if you are unsure about anything just ask, you will not be ignored, you are not alone with your CLL.
Thanks yet go for your reply and good news re your lack of treatment which is very encouraging. I'm 55 and have been in good health being one of those luck people who have enjoyed very good health hence when I went to the docs he jumped on me fast to get my health checked which frustrating at the time has obviously been a good thing. It's good to get good free advice on hear from people who are in the know. I soon found out that checking in on Dr Google can sometimes do more harm than good especially when you have little understanding in these early stages. CLLSA has been the only site I have found that made any sense.
Did you start dosing yourself up on any vitamins etc when you were diagnosed? It seems to me the more you can do to keep healthy the better. I hadn't considered the potential effect on the bodies immune system and subsequent ailments that a normal immune system would fight off.
David, I'm sorry to hear of your diagnosis. It's quite a shock at first, isn't it?
My husband was diagnosed in Feb, no symptoms at all, just had routine blood work. We read and re-read the "reliable" sites on CLL, which we didn't find very encouraging at all. I found this site by chance, googling "anxiety over husbands CLL" and knew I'd found the help and information I needed. We now feel so positive. We aren't alone.
I have learned so much from this site, and am always encouraged by the positive responses.
You seem to have gained a fairly level headed approach very quickly.
Glad you have found this site because the experience and knowledge here is beyond compare.
Have a look at the posts in respect of what questions to ask on your first consultations as these can help you get your head around things. One suggestion write down what you need to ask so you don't miss important questions.
Greetings David, and welcome to our community. Sorry (in the best possible way) to see you here.
I hope you stay i w&w for a long time. However, if you do need treatment sometime down the road there are good options and better ones coming along.
This is a great place to ask questions of others with CLL, however be aware that different countries have different regimes so sharing your country helps with responses sometimes. You used 'MOT' so I guess UK.
Welcome! I love this forum and the sweet compassionate and helpful people that reach out to help us. You will find a lot of helpful information. I was diagnosed 9 years ago and have endured treatment two different times. I don't let CLL define who I am. I continue doing as many of the things I have long enjoyed. I do believe I enjoy every day far more since my diagnosis. Keep your positive attitude and stay mentally strong as well. Be ready for the CLL battle.
Welcome to the group, that no one wanted to join but we’re all glad to have found.
You ask for advice re living with CLL… Well, last year I compiled some lists of simple, practical things we can do to improve our prospects. Many folk say they wish they'd had such information when first diagnosed... I hope you find something helpful there.
You summed it up very well when you said “look after yourself, carry out an active life and enjoy life as best you can.” I think most of the points in my lists, are practical ways of actually doing that.
I keep meaning to re-write the posts, making them a bit more concise and punchy. They sort of grew over time, incorporating lots of useful points added by others. Which was great, but it did make them a bit rambly in places. I haven’t got round to re-writing them yet, but I have updated some things, especially about vaccinations.
Wishing you all the best, as you start on your CLL journey…
I just read your lists, Paula and know I'll be referring to them often. I'm glad to say that after being in the shocked state the diagnosis can put us, my husband (he has CLL) and I have dragged ourselves out of it, and are living life again. We have already incorporated so many of your suggestions into our life. We next see the specialist in June and boy will we be equipped with questions! We won't be two stunned people sitting there nodding.
It's good to hear that you and your husband have emerged from the shocked state the diagnosis put you in. I hope all goes well when he (and you) see the specialist next month.
I agree that being on this site helps us know which questions to ask our doctors. Like you, I can remember how hubby and I started off as two stunned people sitting there nodding and saying very little... Now it's very different...
Thanks for thanking me for making the lists. It did take a lot of time, but it's been worth it to see how people have appreciated them. They were very much a collective effort, with so many points gathered from different people, then more people adding other things.
Thanks David. Yes I thought it would be helpful to gather up that sort of info and make it easier for folk to find. Your asking for advice reminded me that I'd meant to do some editing of those lists - tidy them up and repost for the many new folk who are arriving all the time. Maybe by the time you've come back from sailing round Scotland, I'll have done it!
Hi Paula, I have had a quick read through your posts and yes, some useful advice in there thank you.
I am just curious as to your qualifications on giving nutritional/dietary advice in Part One and psychological advice in Part Two. I'm not judging but for how I process the information myself, it's important for me to know where it's coming from and the knowledge behind it.
Hi Bexsue, I'm glad you found some useful points in "Coping Strategies".
When you asked about my qualifications for giving advice it did rather stall me... Defining one’s own “qualifications” isn’t always easy, but I can understand your need to know where information is coming from.
Most of the points are a collation of what others have already said on the site. They are generally evidence based, fairly basic and mainstream - nothing controversial. The content was read by several other knowledgeable CLLSA members and their feedback incorporated. It was quite a long process...
I realise that the section in Part One starting “Think about what we’re eating” is very sparse. I’m not an expert - I was just giving a few basic ideas, similar to what I might have said to my patients when I was a community nurse. Healthy eating is an enormous subject – people often feel very strongly about it, and can have opposing opinions.
The psychological effects of cancer are also very complex, and I could only scratch the surface in Part Two - sharing what I believe are some helpful insights from the personal experiences of several forum members (as well as some of my own). I always encourage people not to be afraid to seek professional advice in such matters.
My background does of course influence what I write. I was a Registered nurse prior to my retirement in 2007, first working on a variety of hospital wards, then 14 years nursing in the community. I did 3 months psychiatric nurse training as part of my general nursing course. These things were a long time ago now, and science moves on, but these experiences still influence the way I filter stuff I read. I ask a lot of questions, and don’t just accept what everyone says. Studying for a degree in Zoology also gave me something of a scientific approach to processing information.
But I like to think that my most relevant “qualification” for contributing to this site is just being a listening, learning human being who is interested in all aspects of people’s health, and who reads a lot. I have read oceans of material during my years on the HU site, where there is an abundance of information (including many interviews with CLL specialist doctors).
Medical knowledge is changing constantly, but I’ve tried to keep those posts up to date as professional advice changes. (The section on vaccinations is probably the most edited). I’m hoping to do a major revision in future, and any suggestions for improvements are very welcome – from you or any other members.
If there’s something specific that you want to know the source information for, feel free to ask me (or any other writer) the background to that particular info. Please let me know if there was something particular in the diet/nutrition section and psychological sections that you are uneasy about.
Whatever we read on HU, and whoever may have written it, we need to remember the HU guidelines.
"Information posted on HealthUnlocked can support, but will not replace the relationship between you and your doctor or any other healthcare professionals. Information from this site may inform your discussions as well as the exploration of treatment options with your healthcare professionals. You should always consult a healthcare professional if considering changing your medication or treatment."
Hello again David. Just to say that one of the best pieces of advice I read here is 'don't waste what you have today by worrying too much about to tomorrow'.
Easy words I know. You seem to have accepted your diagnosis far better than I did. This isn't the end of the world. It's not the best news but it's far from the worst. Make use of this wonderful little association and it's community spirit. I've said many times, it's not the club I wanted to join but I feel all the richer for doing so.
Hi Peggy, that's the way I intend to carry on. It's very early days for me but already I hit a wall yesterday I think because since being diagnosed last week I kept on with the too positive attitude if for no other reason than to try a stop family and friends worrying. Also once I was told that I wasn't going to pass away just yet anything else seemed to be a bonus. It hit me like a big wave yesterday as the reality kicked in so I started my research and came across this excellent site which has been such a strength in such a short time. What a comfort to speak with all these people who have one thing in common. I now feel like I'm back on track (for now anyway) but I know it's going to be a long haul with so many ups and downs. What a comfort this site is to know when nobody understands how you feel there are plenty of people on here who do and are so willing to help. I always have a positive outlook on life which will come in handy now. I'm off sailing around Scotland for the next few days which is always good for the body and soul.
Remember it's ok to mourn the lost 'you' but the new you is good too, just a little different. Allow yourself bad days, we need them, just remember to always bounce back.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
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