Just diagnosed with CLL, How do I cope with th... - CLL Support
Just diagnosed with CLL, How do I cope with this this devastating news? Have felt nauseous since Lost appetite. Very anxious. Help.
Hi Maureen,
How we all understand and feel for you at this time. I can remember so well those immediate feelings last year following my CLL diagnosis and I felt plunged into a dark, scary world with a knot in my stomach that wouldn't subside. But it slowly does and your appetite will return and the panic will ease.
You don't tell us about the lead up to your diagnosis or whether you're on Watch & Wait but my advice at this stage would be to seek reliable information and support, take strength from loved ones and don't imagine that you've been given some kind of death sentence! The advances in treatment (should be ever need it and some don't) are immense and people can live long lives despite the CLL.
Decide whether you want to tell people because once out, it's a genie you can't put back into the bottle. And there are pros and cons to that particularly when you may continue to be well and symptom free for a very long time. It's a hard cancer to understand because it doesn't follow traditional patterns that people understand about immediate treatment being best.
Others will be along with support and vital information. Please tell us more about your particular situation because that helps us to tailor the advice (and where you're from because services differ from country to country).
Sending you a reassuring hug, support and understanding. People on here understand how you are feeling. We all have CLL/SLL and are at different stages but we all remember the feelings you are now experiencing so well and want you to know you're not alone with this.
Warmest regards,
Newdawn x
Dear Newdawn, thank you for your reassurance and useful info. I am on watch and wait after being
diagnosed on Tuesday. Apart from my white cell count of 164 I have no other symptoms. My doctor referred me to the haematologist after I presented with very swollen glands in my neck. They have since reduced .by about 25%. I live in N.Kent, UK. Once again thanks for your reply. It's much appreciated.
Best regards
Maureen x
Hi Maureen,
Based on living with the same news as you for a year (June 2012 diagnosis), including treatment starting in July 2012 I'd suggest the words of Corporal Jones "Don't Panic". The news at first seems devastating to many, for me it was a it of a numb moment. There is alot to take in and you wont be an expert overnight, however it is important to understand CLL is not fast acting, so start understanding where you are and how to handle the future.
This is a good place to ask people's experiences and take on board their views, some we agree on, others we have different approaches to. What you will get is honest support based on our experiences.
Make sure you are clear in your mind about your support organisation (GP, hospital etc.)
Make sure you are clear on your diagnosis, what stage you are at, some (most go on for years).
Understand what you need to know, what you'd like to know and what you'd prefer not to know. Many here like all the details, I for one don't do as much reading as some of the others. I've taken a different approach, my medical team will guide me (yes, we are a team). In the meantime I'm going to live life to the full - be it a few years or a few decades.
Oh, and if you are in the UK, try to get along to one of the UK CLLSA meetings.
Ask questions, I know we'll all be supportive in our own ways.
I look forward to talking to you again, this year, next year and into the future.
rob
Hi Rob
Thank you for that reassuring reply. I need to wait 8 weeks before I have my second blood test. At this point I will ask many questions. I will try to copy your positive attitude and live life to the full. At the moment it's hard because I feel sick and am losing sleep. How do I stop myself thinking negatively?
Thank you
Maureen
Hi Maureen,
Yes it is very hard not to dwell on the new unknowns and so easy to get into a vicious circle of worry, not being able to sleep because of that which of course gives you more time to worry and then sleep if it ever comes is hardly restful...
While 8 weeks until your next blood test seems like an eternity, take heart in the fact that the medical system sees no urgency in your condition. If it had been an acute leukaemia, you could well be starting chemo treatment right now!
This site will help you find the best questions to ask at your next appointment. You should get some results from some prognostic testing that will give some indication of how gradually your CLL is developing and this will be further determined by regular blood tests and follow up visits with a specialist.
Also bear in mind that now that you have a diagnosis, you are in a much better situation than before. You now know what you are living with and here you'll find tips that have helped many of us improve our quality of life. Many of us have actually found our diagnosis has helped us re-evaluate our lives and work out what really is important to us and with CLL, we have the time to get our priorities aligned with that.
Check out the past polls on this site to get a feel for the wide diversity of experience we share in living with this condition.
Click on the 'Browse all' button here:
healthunlocked.com/!/#cllsu...
I hope you find this reassuring and you know if you have any questions, just ask if you can't find an answer from using the Search feature.
Neil
Hi Maureen
I am really sorry that you have received this news and I am sure that you must be feeling all over the place. I can relate to the very high anxiety levels you mention and as Newdawn says, most of us will remember those feelings, when first diagnosed.
Things will get easier and I am so glad that you have found this place. Here you will find much sound information and great support. Anything you want to know, just ask and people will come to help. If you just want to let out how you feel, this is also a good place.
Be careful not to overload yourself with scary stuff - only use reputable sites for information, as it is easy to get freaked out. You will find info and good links here.
CLL really is not like other cancers and you do have time; nothing is suddenly going to happen.
Keep talking to us - there is nothing you can't say here.
Warm hugs and thinking of you.
sparkler x
Hi Sparkler.
What a lovely reply. You have really made me feel much better. I will certainly follow your advice and keep in touch.
Big thank you for the hugs.
Warmest wishes
Maureen x
Hi there Maureen
Sorry about your diagnosis, but glad that you found your way here.
I think that you will find that you have taken a forward step already, you found this site, introduced yourself, and started to ask questions ... and remember that there are no 'stupid' questions, if something is bothering you, just ask, you won't be ignored.
I am a 55 year old male up here in Scotland, and I'm in my 8th year of Watch and Wait. ( No Treatment )
Just as there are no stupid questions, there is no right or wrong way to approach CLL.
Like Oleboyredw says, some people like to know all the details, for myself, I do the routine tests, talk to the consultant about my general health and leave it at that.
I've left it to the consultant to let me know if things change.
I remember all to well the feelings of first being told that I had CLL, I couldn't sleep, my stupid brain wouldn't shut down for the first few night's that followed, but you will find yourself coping before long, and if there is anything bothering you, let your GP and Consultant know about it.
Like the wee smiley face by the way, and what part of Scotland did the McKeown's come from .....
Hi Maureen
Well done for finding us, everyone here remembers their own diagnosis, I did not handle my own well and remember well the knot and sick feeling to my stomach and was walking in treacle for a while. It is a great shock.
Here are a few UK links to current and reliable information written in patient friendly and understandable language that may aid you understand the condition and prepare you for you next consultation in two months. If you register with the CLLSA you will be forwarded an information pack that includes these patient information booklets.
Pick out what you fancy and take your time and read what you feel you can and skip what you don't wish too ,. CLL/SLL will give you time to go back and read more as you begin to understand the new language and living with a diagnosis that is not a sentence. It takes time but it did get easier for me and these days often is far at the back of my own mind some days.
Register for a patient pack: cllsupport.org.uk/php_files...
CLLSA : cllsupport.org.uk
Leukaemia & Lymphoma Research: website ( Is a good place to start your learning, very recently updated information is available in booklets, Audio and videos and an extensive website written in an understandable manner.) leukaemialymphomaresearch.o...
INFORMATION BOOKLET PDF DOWNLOADS
Chronic Lymphocytic Leukaemia (CLL) :
leukaemialymphomaresearch.o...
Information for those newly diagnosed with a blood cancer:
leukaemialymphomaresearch.o...
Watch and Wait: Monitoring While Treatment Is Not Necessar
leukaemialymphomaresearch.o...
This is brief easy read and current introduction to and overview of CLL written by Professor Pettitt for the UK Lymphoma Association also a good place to start.
Healthtalkonline, uses video snippets from CLL patients and medics to support information you can listen to others and their
Reactions to the diagnosis healthtalkonline.org/Cancer...
Other people’s reactions to your diagnosis healthtalkonline.org/Cancer...
Watch and wait healthtalkonline.org/Cancer...
Living with the symptoms of CLL healthtalkonline.org/Cancer...
Nick
Hi Maureen
Sorry to hear your news but welcome to the forum and you have found a good place to be. I was diagnosed in Feb this year after a routine blood test and can understand your devastation and shock. It does get easier believe me and I see Nick has already given his pointers to you so I have no more to add to that.
Just remember you are among friends here who understand totally your feelings and condition and we are all very supportive of each other. Use it as an information source and a shoulder to cry on, we all have the need to rant at times 
Just remember, it can be quite scary at times with the information out there, I have found CLL Support and Macmillans to be my main sources of information and you will find us all there.
Keep your chin up and together we will beat this
Kirk
Hi Maureen,
Really sorry to hear your news, but Welcome to CLL Forum (hope that doesn't sound too odd)
As you can see from all the replies there are some great people here on the forum who will I'm sure, point you in the right directions on any questions you've got.
Biggest challenge is probably reading all the info (but CLL is often very slow)
Start with Nick's links above - see "Hairbear".
One thing we all need in life is hope.
CLL is (hopefully) not at all as bad as it might first appear (I'm not sure what you have read or been told so far - excuse me for that)
There are at last some great new treatments coming online (that has been promised for years, but I think it is now a reality)
For "Health Unlocked" the name is on the tin
A few sites the folks here have pointed me to (and to many others) that I find really useful in terms of my morale (these appeal to me as I'm a technical kind of person, but with zero Medical expertise, so it's a whole new world):
Dr Jeff Sharman:
And Dr Brian Koffman (also a patient who proves you can survive CLL and look just totally healthy)
Look back though Brian's posts and you will find online video interviews with some of the great researchers and experts at the yearly "ASH" and "ASCO" conventions.
Another new member to HU we have recently (but well known to us) is Andrew Schorr, a medical journalist, who also has some great videos:
patientpower.info/about/and...
Here's one that might be good when you get into the technicalities of trying to understand your blood counts (sorry this may not be the best link, I just found a copy by Google for "Dr Susan Leclair CLL)":
youtube.com/watch?v=bfcYedv...
Perhaps don't read the above in detail just yet (start with Nick's), but in a while, once you are looking for longer term answers give them a try - if only to get a flavour of what is going on - and tell us your worries, to get a balanced view
The appetite etc. will come back, and get replaced with lots of Q. which I know those here on Health Unlocked will give us some amazing answers - I am always truly humbled by their efforts
The above is a little of what did the trick for me (thanks everyone) - Just ask your questions - you will feel different to how it all feels right now
Best Regards,
Ernie
Hi Maureen,
Welcome! You are not alone. This group of individuals are caring, compassionate friends. I live in the United States and came across this site when researching CLL for the first time a little over a year ago.
I was diagnosed accidently, June of 2012 as a result of blood work to help resolve leg pain I was experiencing. I was in complete shock, considering I am female and was 54 at the time, two factors that are considered less common. There were a lot of tears. I not only shed them for me, but for the loss of my sister to breast cancer in 1996. She was 46. I finally knew first hand what she must have been feeling when she was first diagnosed. After much soul-searching, I decided to tell my two sisters and best friend. I did not tell my 28 year old daughter and 25 year old son as since it is a watch and wait situation, I do not want to create worry for them. I may (hopefully) never succumb to this illness and I did not find any justification in having them worry about this unnecessarily. If I ever need treatment, that is time enough to tell them.
On another note, I found my way to a hematologist at Memorial Sloane Kettering in New York, USA. He advised me take two supplements: Mushroom Wisdom - Maitake D-Fraction Tra, 360 capsules and Source Naturals EGCG 350mg from Green Tea, 120 Tablets. I purchase both online at amazon.com. Since taking these, my levels have continued to improve.
In June, I went to a CLL specialist whose name I found on a list of CLL specialists on this site. According to the post, he is the "godfather" of CLL. While at his office, he discussed the green tea and was unaware of the maitake mushroom regimen. I continue to take both. My blood results showed more improvement!! He asked me to return in 6 months and he will take more blood tests, He suspects I may not have CLL after all, but rather, MBL. I came home and went right on this website but found no information. Ironically, a few weeks later, Dr. Sharman posted an article on MBL. Here is the link:
healthunlocked.com/!/#cllsu...
I am hoping that this is the case and that I was prematurely diagnosed with CLL. I will keep all of you posted.
Please know as many of our CLL friends have said, the shock wears down, the nausea subsides. You must keep calm and stay focused on staying well. Stress is the worst thing for any illness. I don't want to minimize our CLL as it certainly is real, however, as a teacher who sees so many young children sick with cancer, I try every day to keep things in perspective and thank God that treatments for CLL are advancing everyday.
Hugs from the United States!!!
LEGO
Hi Maureen,
I can only echo the comments and advise above, and send you a big hug and reassure you that we all understand how scary the diagnosis was. I took it more in my stride because while waiting for the results of my 2nd blood test (having been told that I appeared to have too many white blood cells) I convinced myself that that I would be diagnosed with a leukaemia that would be far worse than CLL. But it was still scary !
I struggle to find the words that will help you through these first few days, but promise that with the help of us all who share on this site, it will become easier, and will not overshadow your every waking moment as I suspect it does at the moment. Investigate as and when you feel like it. I had been diagnosed for 2 years before I started to seek information. Welcome to the site where you will find you are not alone.
Bub
Hi Maureen
I was diagnosed just over a year ago and what you describe is 100% my reaction as well. When I heard the word Leukaemia I felt like I had been punched in the stomach, and totally missed the 'chronic' bit. Like you, I couldn't eat or sleep. I knew I couldn't continue like that so went back to my GP 2 days later, and was prescribed some mild antidepressants to get me over the hump, and 'Maggies Centre' was recommended as a wonderful source of support. I am very lucky that we have one close by, but they have centres right across the country: maggiescentres.org/
They are a charitable organisation - there is no charge, you and others close to you who are affected by your diagnosis can go along and simply chat to someone with a sympathetic ear. I did this initially and then my husband and I booked some sessions with one of their Psychologists. She was marvellous and helped both of us to talk through the issues worrying us as well as helping with stress releasing strategies, but they offer support in lots of different ways, if this isn't your thing. The most important thing I gained from her was the ability to stop thinking negatively. I've been back since when things have got tough again, and I really can't recommend them highly enough. If you have a centre near you, then you may well find it beneficial to give them a call, or to simply drop in - you don't have to have an appointment for that. A year down the line, I'm now in need of treatment, but thanks to 'Maggies' I'm approaching this with optimism and in a very positive frame of mind.
You will get over that initial shock and get back to some sort of normality, but be kind to yourself. It will be a while before CLL isn't the first thing you think of in the morning, or the last thing at night, but that does come in time.
Take care and find something to smile at every day - it helps!
DC
Maureen - My story is a little different than most. I was diagnosed 10 years ago after telling my then doctors for over 5 years that something was very wrong. Hearing that I had cancer was almost a relief, because I thought that I finally had an answer and I could come out fighting. Everything I found googling told me that I'd be dead in 5 years. I'm still here 10 years later, and after fairly minor treatment for my kidneys, which is where my CLL presents, I am doing very well.
I was just updating the patient support file for a facebook page and had posted a message to Nick (aka Hairbear) about good resources in the UK, as I am in the US. I found the comment about supplements from a US doctor interesting, as I have never heard of a doctor recommending the first, and green tea is controversial. My advice about supplements is to always ask your doctor. It is worth getting your Vitamin D and B levels checked, as some of us - I'm one - don't process them the way we should, but if your levels are low and you do supplement it is important to have your levels checked every 3 months or so until you reach a stable count and dose.
The most important advice I have, other than to start educating yourself, is to take a recording device to appointments. You are, essentially, going to be listening to a foreign language for a while, and if you have the doctor's comments recorded you can go back to review them and formulate your questions for the doctor or people here.
Like everyone else here I remember how frightening it is to get a diagnosis of CLL, but you have a lot of living to do. Focus on that, and educating yourself. One thing you will learn is that there are some very exciting new treatments in trials.
Pat
Maureen
Sorry to hear your news, but this is a good band of people to support you. All has been said above.
All I can add (having been diagnosed last New Year) is that CLL is a very slow moving disease (as said above, the fact that is is 2 months before your new bloods also shows this), with a huge range of developing treatments when you need them..
There are a lot of treatments for and a lot of new treatments on the way. There is a huge amount of information.....take is in bite-sized chunks. After 6 months, I think I have a grip on blood results (what, why, how etc) and indicators for when treatment might be needed....I just have not dared to enter the information on treatment yet: way too much! When you get to your haematologist, they will be able to answer your questions too.
And we only get one go at life: so find something every day to make you smile! A lot of people have said on this site that CLL has actually made them appreciate life more! Nothing will happen quickly, but it is a wake up call to enjoy (lots more of) life!
Andy
