Just diagnosed

[Teddy405]

Male, 58 yrs old and I was just diagnosed with CLL in July 2016. I am on a wait and watch right now. Your comments are comforting compared to the articles I am reading

[neurodervish]

Hi Teddy405, Welcome and sorry. You will find so much help here, both emotionally and educationally. It will be a bit of a roller coaster at first, but we'll on be on it together.

If you're comfortable sharing what country you're in and some info about your health, folks here may be able to steer you toward optimal resources.

Earlier today I downloaded this terrific pdf of acronyms that CLLCanada shared: cllpag.ca/CLL_Acronyms_2015... It only took me 3.5 years to find it and here it is for you.

There are lots of other great resources, like spreadsheets for tracking your blood values: healthunlocked.com/cllsuppo...

Sure, it all sounds overwhelming now, but after a while, it won't. One thing everyone here will caution you about is to avoid Dr. Google. Whatever articles you have come across so far may not be worth your time. My CLL specialist always reminds me that the biggest strides in the field of CLL have been made in just the last 3 or 4 years and not to pay too much attention to older articles (unless they've been updated).

A couple more links:

cllsociety.org/

cll-nhl.com/

[cazza55]

Welcome to our family Teddy 405, I was diagnosed over 7 years ago - in my early 50s, like the other comment avoid Dr Google. I am also on W & W and my readings have actually reduced, why? we don't know but I have quite a laid back approach about it all, yes CLL will always be there and I do have down days and every little ailment I wonder if it is down to CLL - I just try to eat as healthy as I can. Yes it is so frightening at first because we wonder what our future holds for us and it is a bit of a roller coaster with emotions but as you can see from previous posts we are living our lives as full as we can and this forum provides the support we all need from time to time.

Wishing you all the best on your journey xxx

[Cammie]

Sorry you had to join us but you have found a site with a wealth of information and experience.

Ask away about anything that bothers you there are no silly questions on here.

Geoff

[Hidden]

Hi, I was diagnosed with CLL aged 53 over 9 years ago and still on watch and wait. I find keeping positive and reasonably fit helps me.

Dave

[PE1234]

Hello and just to say welcome to the most amazing family that will be here for you and will support you when you have a down day which sometimes you may .

Try not to let this decease take your life over .

I know when I was first diagnosed and had to go into treatment I was so afraid and I couldn't focus on anything else .Then I found this site .

The support here is second to none .

There are people here that have lived their lives with this albatross on their shoulder for many years .You will also find that there is so much knowledge too .

Don't let this destroy your life .

I often think of what Neil said to me when I first joined this forum .Go out and live your life and I really do try to do that .You will too .

Take care

Brenda

[SBMACLL]

Hi Teddy405,

Welcome and sorry. Was in your shoes a few years ago and the best advice I can give you is to find a CLL Specialist as he/she will be helpful in taking away some of the stress and anxiety - resulting in a better life. Also pick and choose wisely the articles you read, even on this terrific, fantastic.... site. Remember, actuarial data and statistics only mean anything for a large group and mean very little for an individual, especially with CLL, we are all different.

Best wishes,

Steve

[lexie]

Hi, I am a year into my diagnosis, and in W&W, too. This is the first site I read every morning and even though I am on a couple other excellent CLL sites this one seems to have the most information on a daily basis that resonates with me. Welcome!

[garrick66]

good day Teddy, I too was just diagnosed recently, January this year. I'm on W&W as well.... but have some high risk markers so treatment could come sooner than later. I am confident when the time comes there are several options that will knock it out and keep me healthy until a better option or even a cure comes along. I had a really tough time the the first 3-4 mos and am just now coming out of the fog..... it's quite a kick to the gut at first, especially after you go home and read all the OLD crap online about it. it does get better ! Good luck to you! I'm 49 with 3 kids living in the wonderful state of Oregon. I would also suggest getting into a specialist to give you peace of mind, I did and it helped tremendously.

[Loves2walk]

Welcome Teddy! And so sorry you had to find this site.

My husband was diagnosed in Feb/16 and is on W&W as well, thank goodness. We were both in shock for a good long time, have chosen to tell only those near and dear to us (thanks to advice from here) and so glad we did! The cloud of CLL is still with us each and every day, but thanks to the information and support I found here, the sun is shining through and we are living life just as we did before. Except we enjoy and treasure the days a little more than before.

This site and my husband's specialist are the only ones I use for information and support.

I wish you a long long long time on W&W, and hope you'll check in here as often as you find helpful!

[Philbeech1]

I was on W&W for 4 1/2 years, with minimal physical effects (still commuting by bicycle). Doctors had to tell me my counts were going up - so try not to worry. I would agree with the general tone of the advice here, althogh there is a range of experiences. Treatments are now very good (if you get to that stage) and they are still producing and devloping them. I have just started FLAIR Trial on Ibrutinib side, and side effects after first cycle lasted about 15 minutes until they slowed it down and gave me hydrocortisone.

My advice would be to let people know for 2 reasons - 1. I found half a dozen other people in my circle of acquaintances with CLL. 2. The biggest shock to some people was that I was going into hospital for treatment for something that they did not know I had. I found it better to tell people when it was not an issue but just there in the background. It is just my experience but to me openness leads to support.

Phil

Southampton UK

[AussieNeil Partner Administrator in reply to Philbeech1]

Whether to inform others is a very difficult decision - once disclosed, you can't un-disclose that you have an incurable blood cancer and unfortunately ignorance and discrimination has caused some of us severe problems, with some members reporting losing their jobs. Good to hear that you have found disclosing your CLL a positive experience, even finding you share this condition with other acquaintances. We conducted a poll on discrimination here: healthunlocked.com/cllsuppo....

In your case, having started treatment, it does become harder to keep your diagnosis private, though hopefully with Ibrutinib that will be much less of an issue. I hope it goes very well for you.

Neil

[Peggy4]

Hi Teddy. Nothing to add to the great advice already given, just to say hi and welcome. I'm sure you'll find this site as invaluable as I have. Lots of knowledge and support available which has certainly made a huge difference to me.

Peggy

[sqjames6011]

Hi Teddy...I have been living with CLL for 8 years and have kept it in check w/ high doses of vit.C IVs... from my naturalpath. They call is "Meiers Cocktail" ..comb. / 25 grams vitC+ B complex + more. My oncologist says it is "astonishing". If you can't get I.V.s go to "Liv -On" for a liquid packaged vit. C that can go into blood stream .

Best. S.