Just beginning...

[redhead1287]

This is my first post. I have nothing to contribute so far. Had first visit with hemotologist in Dec. with a follow up visit to be this month. That was cancelled due to coronavirus. The only bloodwork I had showed I was a stage 0 or Stage 1 with a WBC of 16.9. Spleen was mildly palatable. Suggested maybe a scan but so far never followed thru with that. I will make my next appointment after this virus scare is over. He just said I was on "Watch and Wait...or Worry". I'm learning a lot from this group and will contribute more after further follow up appointments.

[cajunjeff]

Welcome redhead. Cll is a confusing and complex disease, it has taken me a long time to get my head wrapped around it.

So after four years of dealing with it, if I had to boil down what is most important to know right now, it’s that it’s not to get freaked out and think your life has changed. It hasn’t. It’s the same it was the day before you got diagnosed. You likely had Cll for a long time before your diagnosis and got along fine. You will get along fine now too.

At its worst Cll is a manageable illness which can be managed for the life expectancy of many of us. At its best, it’s even money it’s curable for a lot of us.

Never has there been a better time to have our illness. It sucks but we have great options to live normal lives. Sorry you got Cll, glad you found a good community to get through it with.

[Madison1995 in reply to cajunjeff]

You’re so positive Jeff. It’s always nice to see your responses

[cajunjeff in reply to Madison1995]

Well that’s a nice thing to say Madison, I am no expert. And while I like to look at the half full glass, I try not to sugarcoat things. I do believe based on what I have read we have a manageable disease.

Here is the more good news. The statistics look at large groups. Most everyone on this forum are proactive people. Our odds get even better when we inform ourselves and make good decisions.

The majority of people who found their way to this forum are people who are being proactive. People on here will, on average, manage better. Just my opinion. I truly see Cll as a manageable or curable illness.

[PlanetaryKim]

Hi redhead. Welcome!

[HopeME]

Welcome redhead! No need to contribute now. You’ll have plenty of opportunities to do so in the future. A couple of general but important points:

1) If you are in a country/jurisdiction that allows you access to a CLL Specialist make the move now. Find someone you like and most importantly trust. If you are in the US there is an expert access program that can be done via video through the CLL Society. Make sure you also have a strong relationship with your GP. Develop these relationships before they are critical. This disease can move slow or fast so it is never too early to develop a cohesive team.

2) Get up to date on your vaccinations while your immune system is relatively strong. Even at the best hospitals this isn’t usually stressed enough;

3) Learn about the disease through groups like this. The idea is to educate yourself so you can ask thoughtful questions. Doctors are human too and as such they forget things in the fast paced environments they operate within. Good doctors like an educated patient and educated patients get better care;

4) Enjoy Life! Stop and smell the roses. Don’t fall into the trap of not living because you are so wrapped up in the disease.

5) Move! Exercise is one of the best weapons against CLL. Start tracking your steps on your Apple phone or similar device. Try to average 10,000 steps a day.

6) Improve your diet. Start with small changes and build upon them. Drink plenty of water!

That is it for me tonight. Good luck and welcome aboard!

Best

Mark

[WinJ3]

Welcome Redhead.

[JigFettler Volunteer]

Hi Redhead1287

Welcome to our Forum.

There is a ton of info, opinion, guidance here, the standards are robustly maintained by our wonderful Admins.

Do take time to learn how the Forum format works, try searching the posts, and peruse the pinned posts.

Importantly many listening ears and sympathetic supporters.

There is a long and winding road ahead. Room for optimism, much learning and new opportunities.

Best wishes

Jig

[Horatio2]

Hi Redhead! I, too, was diagnosed in December 2019/January 2020. This forum has been such a blessing. You are definitely in the right place to learn more and talk with people who care!!!

[Ironj]

Hello Redhead

The obvious is the shock of hearing you have a blood disorder. That being said there is an abundance of treatments out today that were not available 10 years ago.

I say this to people all the time as it helped me cope with my condition when I was diagnosed.

1/3 of people will need treatment at diagnosis, 1/3 of people will need treatment maybe in a decade or 2 and 1/3 of people will never need treatment. You not undergoing treatment at this point so you’ll most likely fall into the other 2 groups.

One very important thing you should do is set up an appointment with a dermatologist as skin cancer risks are much higher with CLL patients.

Best wishes John

[Madison1995 in reply to Ironj]

Hi John. Hope you’re well. We haven’t talked in a while, so wanted to say hello 😊

[Ironj in reply to Madison1995]

Hello Jenny, I’m doing very good. I hope your doing good as well.

[Ghounds]

Welcome Redhead. There's a wealth of useful information here and no question is ever dismissed as trivial or silly. Take your time, there's no rush. You can be completely honest about how you feel and we are always here for you.