CLL

[Louiseleech]

Just been diagnosed with CLL, any advice would be very welcome x

[AdrianUK]

Louise, first of all know you are not alone. We are a community who all share this strange experience. And whilst you may feel alone, you are not. Your friends and family can be a Great support to you. Consider who you want to share this news with. Not everyone all at once. Start with those closest to you. Then, give yourself some time. Take tomorrow off work. Realize this is a major life event. Don’t let anyone fob you off with comments like “it’s the good kind of cancer...you should be relieved”. It’s still cancer. And by definition it’s in every drop of your blood by the time you are diagnosed. And what’s more, they may well say that they don’t think it’s right to treat you. That, plus the uncertainty you now live with after every blood test, and every PET CT, will take a while to get used to. Have a chat with someone who has the condition today if you can. Because there is a commonality to our experience that non sufferers won’t get. Make sure that you are referred to a top CLL Center. You want to be treated by one of the real experts even if it is “watch and wait” or “watch and worry” like some of us call it. There are various tests to do to help predict whether you will more likely be a slow progressor or more rapid. But don’t think that those tests are the be all and end all. You could be a rapid progressor but respond really well to meds and feel better than a slow processor who had symptoms. How did you hear the diagnosis? Have you been staged yet? Who have you told?

[AdrianUK]

Oh and beware of Dr Google. There is outdated info out there that might make you more anxious. Things are moving fast in this illness, and treatments are improving.

[Hidden in reply to AdrianUK]

Yes I always check the date on any articles and videos I discover and I skip by the ones that are outdated.

[manzelka]

I always go to appointments with my husband two pairs of ears are better than one.

Make a note of things you want to ask as we found the minute the doctor said "is there anything you want to ask me" all the questions we wanted to ask disappeared from our minds.

I find this site a great support.

[Hoffy]

I hope you're doing well. No need to move quickly. Get a second opinion from here CLL expert Dr.

The CLL Society web site has a lot good information as well.

30% of people at CLL never have to get treatment .

[Jacksc06]

Hi Welcome to the family. As you are asking for advice you are now in the best place for advice & support. You are probably in shock as it is indeed a big thing to take in. My advice - Stay calm, be positive & look after yourself & I see there is excellent advice from others already. We are all different & react/respond to this differently. I have catalogued my journey from start to present day, Warts and all Good & bad. Please feel free to browse & I hope it is of help/comfort to you. Regards.

[lankisterguy Volunteer]

There is a wonderful series of videos by Dr. Susan LeClaire on Patient Power that you can watch over days or weeks. She has a wonderful way to simplify the complex discussion.

patientpower.info/video/bre...

patientpower.info/video/blo...

patientpower.info/video/web...

then you can choose from many other subjects at:

patientpower.info/bio/susan...

If you learn well by reading text- try this CLL101 course:

cllsociety.org/cll-101/

follow all the subjects down the left side of the page, exploring each one in order, then use the boxes across the bottom of the page to find reference information to use in the future.

And please remember this is like getting a University degree- it takes time to absorb all the info.

chew new information thoroughly before swallowing

and take your time - it's like learning science in a foreign language.

Len

[Hidden in reply to lankisterguy]

Thank you.

[Cllcanada Top Poster CURE Hero]

Welcome... from Canada🇨🇦

Here is a just updated Patient Guide well worth reading, but take it in small pieces.. CLL can be overwhelming...

Also note this is a U.S. publication and CLL clinical approaches and its treatments varies by country...

The basic science is obviously the same...

nccn.org/patients/guideline...

Long and winding road.. take time to enjoy your life...

~chris

[Lily_Pad_Master]

Louis, so sorry to hear of your diagnosis. You found the right place to connect. This will be a long journey, but take heart. Treatments for this disease today are vastly different from what they were even five years ago, as are the outcomes. You will live a long life. My doc shared his excitement with me when I first saw him and reassured me with "We have you on the 40-year plan." I was 52 at the time, so that's fine by me. I guess the one piece of advice I'd offer would be this: Use Google to locate the very best center of excellence for this disease that's within reach of you. I live equidistant from NYC and Boston here in the US, so I consider myself privileged to have been able to choose between Sloan and Dana-Farber. I chose DF. A local doc would have started me on chemo immediately and, by this time, I'd probably be ready for a second, and riskier, round of treatment. Even if you can only make the trip occasionally for a consult, let the world's best advise local docs if you plan to seek care locally and you're away from one of the most well-regarded centers for treatment of this disease. Also, getting that consult (and going back) might make it easier to get into clinical trials, which can be really great for those of us with this disease. All the best.