nuboy
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Adjusting to the news

nuboy
Posted by
30 Mar 2015

First weeks after a diagnosis of CLL

Good morning, world!  It is 10 days since a hematologist-oncologist told me I have early stage CLL.  I am a 70 year old male living in Florida..  This diagnosis came as a complete surprise.  I am very conscious of my health as I have several other conditions that I have been watching for years:  plaque build-up in some arteries (no heart attacks) and prostate cancer (no detectable cancer for 2 years, following a tiny lesion found in a biopsy). The CLL frightens me because I don't know anything about this kind of illness.

But knowledge is power, so I guess I will have to learn about it.  I have emailed the local leukemia society to contact me for telephone counseling with regard to learning about your diagnosis, but I have not heard from them yet.  I played down the significance of the disease when I informed 3 close friends last week, but I now realize I need some support.  Those friends were not too concerned, and so quite naturally they don't even mention it, LOL!  But I need to vent, to jawbone with someone who understands the disease, so I can get a better idea of what I am facing.  I feel healthy and my only possible symptom so far is fatigue, but this is not too bad, and this site advises staying active and not giving in to this symptom of fatigue.

I'm a little worried because my next appointment and testing with the oncologist are not scheduled until early June and I am leaving in 2 weeks for a 6-week holiday in Holland and England.  He told me not to worry, but I'm concerned anyway.  I NEED to talk to someone about this.  

At this point I guess the only active thing I can do to fight the disease is keep up my exercise of walking and swimming, and my healthy diet of good food.  

 

Comments

01.04.2015

Hi Jay,

Really sorry to hear about your recent diagnosis. Diagnosis is a confusing time for patients with so much to try and come to terms with not least the shock and understanding where you stand and what it all means.

As you say knowledge is power and in the first instance we'd recommend that you get in touch with your oncologist with any questions or concerns that you might have. However, there is also lots of information out there to help you make sense of CLL and the options available to you. Our section on the website about CLL is a good starting point. (https://leukaemialymphomaresearch.org.uk/information/leukaemia/chronic-l...)

We also have a number of downloadable booklets and general information available that might be of interest including a section for newly diagnosed patients: https://leukaemialymphomaresearch.org.uk/information/all-blood-cancers/i...

In regards to support it sounds like you're already making all the right steps and I'm sure that your local leukaemia society will be in touch in due course. However, again there are other options available to you and we're here to support in any way that we can.

We also have a number of CLL patients in our online community at various stages of their CLL journey who have written blogs that you can contact by leaving a comment on their blog. Here's a link to our patient experiences section, you can use the filter to find people with CLL specifically: https://leukaemialymphomaresearch.org.uk/patient-support/experiences

In addition, we have an active patient community on Facebook who are incredibly supportive and will be more than willing to talk about your understandable concerns. With that in mind, would you be interested in us sharing your story with our Facebook supporters?

Stay in touch and remember that you're not alone. 

 

Anonymous
01.04.2015

Hello Jay.
I hope you have had time to look at my blog (Christopher Faulks) which tries to tell similar sufferers about CLL and if you should ever need it, one of the treatments you may receive.
Do not feel you are alone in having this disease. There is so much help out there, not least from LLR, who will aid you through these early stages and even through to treatment should you need it.
One thing you can be sure of there are treatments available that are very successful and Charities like LLR are doing even more to further improve these.
Enjoy your visit to Holland and England and do not hesitate to start dialogue with people on the LLR site who have also overcome the same doubts and confusion exactly as you are experiencing .
All the best Chris Faulks

Anonymous
02.04.2015

Hi Jay! i,m an Argentine general physician and my father has been diagnosed with CLL 13 years ago. I,m willing to help you in any way, i know how stressful your disease is for you and for your family! Please let me know how may i help you in any way! Maybe i could chat with you or Skype, whatever makes you fell better.
Best wishes!

Anonymous
02.04.2015

Dear Facundo,
Thank you so much for writing to me. I am touched that you are willing to chat about CLL with me, and I invite you to write to me at my regular email address in order to arrange to talk on Skype. My address is nuboy@comcast.net
I look forward very much to hearing from you again!

02.04.2015

Thank you so much, Andy.  It is a bit overwhelming.  But I'm trying to explore this excellent site.

I have received some nice responses, even inviting me to contact them to chat,

which I would greatly enjoy.  But I don't know how to reply.  Should I simply use the

Comment box as I am using now?  Thank you so much.

Jay

02.04.2015

Thanks so much, Chris. I hope somehow you will receive this response. I have already had several very generous responses like
yours. I would love to read your blog, but HOW CAN I ACCESS YOUR BLOG? I've looked on the whole site but cannot fathom how to locate your blog. Sorry to be so inept, but could you inform me?
I want to respond to your blog--once I have read it!
Sincerely,
Jay

02.04.2015

Dear Dr. Facundo,

Thank you so much for your generous response.  It is most encouraging to me.

And yes I would truly appreciate chatting with you on Skype.  Could it be

convenient for you to drop a line to my home email--nuboy@comcast.net and I can share my 

Skype nickname with you?

Thanks again and best wishes to you.

Jay

04.04.2015

Hi, all!  Well, it's already Easter weekend.  Since I wrote my first post I heard from the local Leukemia and Lymphoma Society support coordinator in Tampa, Florida, and told her that I would appreciate chatting with someone who has gone through a situation similar to mine.  By that evening I had a wonderful phonecall from an Englishman living in my city, Sarasota, who offered loads of encouragement and information.  What an amazing phonecall!  We agreed that it's wise to study up on the disease, CLL, but also to try not to let it take over one's day to day life and activities.  

I also had an appointment with my internist/family doctor, and he pointed out that my thyroid score was elevated. So we may need to treat this condition.  In a sense I hope so, because the fatigue I have been feeling might be due to hypothyroidism, which is quite treatable.  I should know more from a second thyroid test today.

I want to thank those in the UK who have so generously written to me on this site.  I am having a bit of trouble figuring out how to answer their messages, but perhaps they will write again and tell me how to answer them on this site!

With most cordial wishes,

Jay

 

04.04.2015

Hi Andy, I appreciate your communication so much, thank you!  Of course I would be glad for you to share my story with your Facebook supporters.  How can I find this community on Facebook?

 And could you tell me how I could reply to the messages I have already received from

patients on this page?  I can't seem to figure this out!  

I'm glad you're there.

Jay

Anonymous
06.04.2015

Hi Jay,

I was diagnosed with CLL six years ago aged 40. I have been well in those years. CLL is a weird disease where you live in a kind of no mans land which outsiders struggle to understand. I hope you soon find the 'new' you and begin to live life as before as best as you can.

Anonymous
06.04.2015

Hello Jay, I can't really add much to what others have said. You are absolutely right to say knowledge is power and the LLR booklet about CLL was handed to me when I was diagnosed and proved a great help.
Don't feel you are alone in having to come to terms with this diagnosis. I was diagnosed at the end of January this year. On the plus side, I'm asymptomatic at the moment. On the negative side, I'm only 58.

Read all you can, You may be surprised how positive and optimistic people are today. Research is advancing in leaps and bounds and a bright light is being shone into the shadow this disease casts on so many lives.
Enjoy your visits to Holland and England, I'll try and arrange some good weather in the latter for you. :)

Anonymous
06.04.2015

Jay, you're right to realize that you've got some studying to do. The learning curve is steep. There is an American site you can access through doing a Google search for ACOR. I also traveled soon after diagnosis but be careful to avoid infection! You will learn that immune disorders such as CLL really take a toll, and one doesn't recover from illness very quickly. I took an antibiotic prescription with me when I traveled to Europe, but that was a winter trip when everyone seemed to be sick. Best of luck, and feel free to contact any of us. I'm in Georgia, by the way.

Anonymous
06.04.2015

Dear Jay,

Someone very close to me has had CLL for a number of years now.

He does a lot of exercise, eats well & has a very positive mental attitude towards life in general.

He is now part of a Clinical Drugs Trial & is getting on very well on it.

There is a lot of help available & it is a manageable condition.

Plus advances are being made treatment wise all the time, so it's all very positive.

Take good care of yourself x

Anonymous
06.04.2015

Well Jay if you have to get Leukaemia CLL is probably the best, my husband was diagnosed 9 years a go in his early 50's he continued to work for a very long time as no treatment at that time he was on 'watchful wait', don't get me wrong there have been bad days but he survived a triple heart by pass 4 years ago and yes it took it's toll and his bloods never got back to what they were before the bypass but we stayed strong supported him knowing at some point treatment would be needed. That time is now he's having monthly IV chemo and 5 days of tablets, he's half way through his 6 month course and yes he's sickly and off it with the tablets for about 10 days but the time till the next treatment he's been transformed, I can't remember a time when he could wash the car, potter in the garden sweep up outside, and generally take an avid interest in things. I'm really hopeful for the future so take fear not Jay I'm sure you will be fine, sending you love hugs and healing thoughts to you and your family. x

PS enjoy your holiday we have never stopped holidaying despite the CLL

Anonymous
06.04.2015

hi i was diagnosed in 2009 with M.D.S i was lucky enough to get a donoer early i am now 5yrs. cancer free thank God. i went through alot i wont lie but it was well worth it. may God carry you through your journey as he did for me. God bless you !!

Darlene

Anonymous
06.04.2015

My husband was diagnosed with CLL over 4 years ago. He remains generally tired but well. His appts are every 5 to 6 months. A lot depends on how your white count behaves and how quickly it doubles. Over 12 months is often a good sign.

It does help to seek the right support and this site has been good for us.

Enjoy your trip and good luck with everything.

Anonymous
06.04.2015

Jay
I've had CLL for the last 7 years. If you wish to talk, just give me a shout. P444ete@me.com

Anonymous
07.04.2015

Hi Jay
Sorry you have entered my world. My Diag. came at 48. I am now 58
My best advice is join CLL forum.
http://www.cllforum.com/
Almost 7000 members all have CLL or their care takers.
Everyone there is very helpful.
Anything you need to know can be found there.
As for your trip if your Dr. says its ok to go then by all
means go .
You may never get to the point of needing treatment.

Anonymous
07.04.2015

Hi Jay,
It is such a shock when you receive this diagnosis and then they tell you the treatment is watch and wait! I have had CLL for 16 years since my early 40s. At first I just wanted my doctor to do something which would have given me something to focus on. I found doing nothing about it very hard. It is not like a diagnosis where you fight the disease. You have to go along with it. I first had chemo treatment in 2007/8 then again in 2011. I am now on Ibrutinib and feel very positive about the outcome. Fatigue is an issue as well as infections. My best advice is to get in tune with your body and recognise when you may need to rest. When you are tired you may be battling a bug! I found this very hard at first as I was so young and otherwise fit. Go with it - it really isn't a fight like it might be with acute disease. I hope this helps and I wish you all the best.

Anonymous
07.04.2015

Hello,
It's nice to meet you. I am in Melbourne ,you look like a very healthy guy and I suppose your friends think that too so they don't seem concerned or don't know what to say maybe??. I have been touched by your illness recently as one of my School Pals has also been diagnosed, 5 years ago. I know you are going on a great trip soon, maybe you can see an oncologist in ENGLAND Or Holland - take your reports with you - you should be able to book an appointment b4 you get there ...I don't think you should WAIT till JUNE (that's a very long time)....Apart from that I wish you a happy time exploring on your holiday and send you a hug.
Sharon C

Anonymous
07.04.2015

Hi Jay

I am an Acute Myeloid Leukemia survivor. My treatment was different from what you may encounter soon. However, it does not stop me from being a listening ear. Wylliemcgruder@gmail.com is my email.

07.04.2015

Hi Jay,

I’m really sorry to hear that you’ve been having so many problems trying to reply to all the fantastic comments on your blog. The response is one of our best yet and also saw lots of people provide messages of support and advice on our Facebook page which you may also want to take a look at: https://www.facebook.com/beatingbloodcancers/photos/a.426601478242.21463...

I know Kate has already been in touch but I thought I’d email to help clarify how you can reply and can only apologise for not getting in touch earlier due to the Easter Bank Holiday Weekend here in the UK.

The best way to reply to messages you’ve received on your blog is to do exactly what you’ve been doing already which is by pressing the reply button by the message that you want to respond to and typing your comment in the comment box that subsequently appears.

If you want people to know that the reply is from you and ensure that you receive a notification should anyone subsequently reply to hour comment, don’t forget to log in before posting your message. A number of people who have posted comments on your blog (including Christopher) forgot to do this and as result will not receive notifications of any of your subsequent replies (although they will appear on the page).

All very confusing I know but we are looking at making the process clearer to ensure that people are reminded of the need to log in in the future.

It’s fantastic that so many have responded and are happy to speak to you directly while it’s also wonderful news that someone from your local society has also been in touch.

I know that you were unsure of how to contact Chris so have included a link to his profile page so that you can read about his experiences with CLL: https://leukaemialymphomaresearch.org.uk/people/christopherfaulksntlworl....

The best way to get in touch with Chris would be to leave a comment on one of his blogs. If you want to speak to him offline then you’d have to ask him for his email as we’re not allowed to give out supporters email addresses without their permission.

I hope this clarifies things somewhat and removes some of the obvious confusion and frustration on your part. If you have any further questions please don’t hesitate to get in touch and remember that you’re not alone!

I hope you had a good Easter,

Regards,

Andy

07.04.2015

Hi Christopher,

You are so kind to write to me, I don't feel like a stranger here anymore.  You touch on something I have started noticing:  i.e., that outsiders struggle to understand, and that means that they often do not really understand how it feels to live with this uncertainty.  But I don't hold that against them   I know that my special ones do care about me, even as they usually "close off" the subject of my CLL.  That's why this community of insiders is so important and valuable--we can speak frankly.  Please feel free to write me if you have any concerns to air...or just need someone to vent to.  Spring is here!  --Jay

07.04.2015

Dear David,

You're a brick to offer those consoling thoughts. I agree that we are living in a period of rapid scientific advances, and that's encouraging. I am getting into my stride of reading up on CLL, but I'm also trying to remain who I was before the diagnosis: someone who did not medicalise my whole existence. I definitely want to know what's what with this disease, but I do not want to turn into a total patient. So, as I'm sure you are doing yourself, I am redoubling my efforts in the areas of exercise (fitness), travel when possible, and enjoying my friends.

Please keep me posted on your own progress. I'm interested!

07.04.2015

Thank you, msuteg, for the tip about ACOR, which I'll check out.  I'm packing all my many supplements and would be able to see a doctor in either Amsterdam or London without any difficulty.  But I hope for a smooth trip.  At least I know I have a good comfy bed to sleep in in both cities!  I will do all I can to avoid infections too.  Thanks a lot.  Ah, those Georgia peaches!  I wish you good health and the continuing support of your friends wherever they are, including on this wonderful site.  --Jay

07.04.2015

Thank you, dear Helen, for writing to me as I adjust to my new diagnosis.  I confess I DO feel encouraged by all the research, and truly treasure the human support offered on this site.  Best wishes to you.  --Jay

07.04.2015

Thanks, Helen.  Your husband sounds like one tough nut, a guy you can be proud of.  And you have been beside him all the way.  I do think we all have a lot to be grateful and hopeful for.  Thanks for your hugs and healing thoughts, I need em.  And good for you for continuing to take holidays!  It's an engrained habit with me too, LOL!  --Cheerio!  Jay   

07.04.2015

Hi Darlene, Your words bring encouragement to me, thanks so much.  Thanks for your good wishes and prayers.  May God bless you too.  --Jay  

07.04.2015

Hi Kerry,Your comments are very helpful, thank you!  16 years with CLL is encouraging news indeed!  I have some experience with "watchful waiting" as I had prostate cancer several years but had no treatment for the tiny lesion, only gave up red meat and followed a rigorous diet and exercise regimen.  For the last 2 years the MRI has revealed no cancer.  I don't feel passive in the face of CLL because I can exercise, eat right as I've been doing for years, and do my best to avoid infection.I'm learning about handling fatigue.  One interesting twist is that I've just learned that I have an underactive thyroid (hypothyroidism), the symptoms of which are fatigue and depression.  The doc has put me on a replacement medication and already I am feeling less fatigued, even after heavy exercise.  Who knows?  Maybe my fatigue was caused by hypothyroidism rather than by advancing CLL?  I am not being Polly-Annaish about it, but I can only state that so far I feel normal, nay better after starting the thyroid medicine.  I am super aware of my health and watch closely for bugs etc., but I appreciate your saying it's all right to monitor this like a fanatic.  And it's encouraging to hear you say it's CHRONIC rather than ACUTE.I wish you all the best and would always be happy to hear your advice, or even just schmoozing.  --Jay

07.04.2015

Hi Sharon,So nice to hear from Melbourne, thank you.  I shall follow your lead and take my reports with me on holiday. I am seeing a doctor friend while in London too.  Thanks for your holiday good wishes and the hug.  I love my Aussie friends...they really know how to HUG!  :-)Jay

07.04.2015

Thanks, Wylie.  I like hearing from any survivor, and I'm keeping your email address in my directory.  If I need a listening ear I will feel free to pester you.  In the meantime, let me wish you continuing good results from your treatment.  Your generosity is a good instinct which probably helps keep you healthy.Jay

08.04.2015

Hello again, world!  Well, time marches on and often good things happen along the way.  As I pack for my holiday to Holland I am feeling a diminution of fatigue thanks to a medication my internist prescribed for my recently discovered thyroid deficiency.  The main symptoms of hypothyroidism are fatigue and depression, which I've experienced since January, despite best efforts to keep up my strenuous swimming.  Almost overnight the fatigue faded, and I'm convinced it is from addressing the thyroid problem.

Of course fatigue is also a symptom of CLL, but I think it was important to distinguish between that possible symptom and the very real and present symptom of hypothyroidism.  Anyway, these are early days, and my docs are keeping vigilant eyes on both challenges.  I thought I'd mention it in case anyone else might want to check their thyroid function.

I've been splashing around quite a lot at the beautiful big Olympic pool here in my city.  This is my favorite way to exercise--swimming laps--and there's a great spirit of camaraderie at this pool.  Since January I found myself hating those laps that I once loved doing.  All I wanted to do was creep into my bed, but I forced myself to keep swimming.  Now, suddenly starting this thyroid replacement medicine, I actually WANT to swim again and am enjoying it again.  Who knew?

I'd like to add a BIG Thank You to everyone who responded to my original post.  I'm so glad I found this community because you have given me incredibly useful information in addition to other intangible forms of support.  I am quickly learning that reaching out to others is a very positive contributor to health.  

It's time for me to study in much greater detail the known facts of CLL.  I now have an excellent small bibliography of articles and studies to read.  Research is the professional acitivity with which my life has always been filled (though admittedly this subject is new to me, LOL!).  I'll be on holiday for a few weeks, but don't forget me, as I'll be back.  Thanks again, and heartfelt best wishes.

Jay

11.04.2015

Hi Ray
You are kind to write to me.  It’s encouraging to hear from you.
I’ve just signed up with the CLL forum, and look forward to learning
more there after my trip.  Looks like a nice bunch of people.  And
a lot of great information. 

My internist discovered that I had a thyroid deficiency and put me
on a good med to bring it up to par.  I almost instantly felt less fatigued.
I know that CLL produces fatigue, so it was good to separate the
thyroid fatigue from the CLL fatigue.  I’m swimming a lot almost every day,
and this is a form of exercise I enjoy.  Have you any tips for fitness?

Thanks again, and good wishes to you.
Jay