New To This

[62Panhead]

I recently found out from a routine blood test that I needed to see a hematologist. After she reviewed my blood work I was told I have CLL. Of course this is very concerning, and I'd love input on what I am in for

[neurodervish]

Welcome Panhead (the 62 is quite a classic Harley!). You will find lots of help, info, & camaraderie here.

The pinned posts section has a wealth of info for newly diagnosed folks. healthunlocked.com/cllsuppo... It includes answers to questions like “How long will I live?” and “When will I need treatment?” healthunlocked.com/cllsuppo...

Routine bloodwork doesn't normally confer a CLL diagnosis, but repeated blood tests showing abnormally high lymphocyte counts suggest that a specific CLL test (called a Flow Cytometry) should be given. Have you gotten that test yet?

[lankisterguy Volunteer]

Hi 62 Panhead,

In addition to the great answers so far, you may want to read this: healthunlocked.com/cllsuppo...

and all of the other answers here: healthunlocked.com/cllsuppo...

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Welcome to our group (none of us wanted to join either) but take a breath and a few calm steps - it's a long journey and learning curve, but you will have many years to study and absorb about your own future.

Len

[Vizilo]

You may be lucky and never need treatment nor have any symptoms. I, for example, did not require treatment for the first 6+ years and still have no symptoms after 10 years. If you do need treatment, it will likely be 1-2 pills a day.

It will be useful to exercise, watch your diet and have social supports for your journey.

Welcome to our club!!

[That1Guy]

"But this is not the "C"ancer we grew up scared to death of, it's cANSWER. A chronic inconvenience that is affecting your immune system. "

I needed to hear that just now, and I didn't even know it. "A chronic inconvenience."

TY, Jammin.

[SofiaDeo]

Another analogy I like is it's similar to being given a diagnosis of Type 2 Diabetes. Can people die of diabetes, can people choose to do things that aggravate their diabetes? Yes. Can people make choices so that their diabetes impacts them very little? Also yes. And like people with diabetes, some have few symptoms/problems, and some have many. What we CAN say, is if you've been making generally unhealthy life choices, choosing healthier ones tends to lead to fewer problems. Eating well, staying hydrated, exercising, avoiding/mitigating stress, all help us similar to how it helps others with chronic diseases.

I am wondering if you heard the hematologist correctly, because this diagnosis doesn't come from a hematologist reading routine bloodwork. It takes specialized bloodwork that isn't done during yearly physicals. Did the hematologist do extra bloodwork, and that's how you got the diagnosis? Or did the hematologist say "I think/suspect you have CLL" and you are doing a followup?

[Katie-LMHC-Artist]

Good morning. Welcome. I found this site last April and it has been extremely helpful with my journey!I was in wait and watch for 12 years before talk of treatment. Of course I was a little freaked out when I was diagnosed. There is so much support on this site. I started treatment with Acalabrutinib last December. I am no longer fearful and live my life in the present. I work P/T which helps me to keep going. I believe the key is to try not to sweat the small stuff and have a purpose in life be it volunteering, spending more time with children and grandchildren, taking classes, or continuing to take off on the weekends and ride. (I had my own motorcycle years ago and loved taking off to ride the country side with others!) Good luck with your journey!!!

[Jespere]

Hello! I'm new here too. White counts about double normal and my doc sent me off to a hematologist. He ordered more bloodwork (including a flow test) but otherwise didn't seem terribly concerned since I have no other symptoms, no spleen or lymphnode enlargement. My flow test came back as hairy cell leukemia, rare but as indolent as CLL. The treatments are different but prognosis similar. I will see an HCL specialist and have more blood work next week. BUT all the advice here is good. I've only told a couple of close friends/family. I've done a lot of reading and follow this group. As you can see, everyone is upbeat and supportive and I'm amazed at the knowledge base. I wish you well!

[Phil4-13]

62Panhead, you are definitely in the right place. I'm 74, diagnosed in 2019, doctor thinks it started in 2018. I feel good, still work, 4 months ago WBC was 85,000, the rest of the labs are not where they should be, but not a concern. I've never had treatment. I'm glad you are doing well.🙂 Sandra

[Astro617]

Hi Panhead, I was diagnosed in 2005 at the age of 51. I have been very fortunate and remain in watch and wait. The pandemic did change my lifestyle but before that, CLL was something I hardly even thought about (once I got over all the anxiety over the diagnosis - that took a few months!). Wishing you an easy course! This is a great place to learn a lot about CLL. The moderators are VERY knowledgeable.

[Agiledog]

62PH

Great advice so far from this deeply knowledgeable group of CLL fellow travelers. Not physicians, but remarkably trustworthy in experience and knowledge gained through their own journeys. I will be 80 next year and was diagnosed at the age of 67. I was like a deer in the headlights, having had only routine blookwork out of whack, revealing what the oncologist said was “probably a low-grade lymphoma or CLL”. The next immediate step was FISH and Flow Cytometry genetic analysis which confirmed CLL. Next was “locate a CLL specialist for second opinion and guidance”. Very important! Dx was confirmed and plan recommended. So here I am in my third line of treatment, still sailing along, living a great life, very few bumps along the way, supported at each step by these wonderful folks at CLLSA, and miles to go!! You got this!

Take a breath, easy does it!

Bud

[TartanAlum]

TO give you some additional reassurance, I am about your age, and had a different experience from the others who posted- I went from initial diagnosis to requiring treatment in about 6 months, because of the rate of increase in lymphocytes. I a also on acalabrutinib, and, except for minor illnesses taking longer to get over, and some minor fatigue, I have seen relatively little change in my quality of life. The tests mentioned by others to identify your specific blood mutations will help determine your treatment, when needed, but your life will not be changed in a big way.

[Jacksc06]

Hi. Welcome to the family. You probably have a lot of questions. The good people here will support and advise you on your journey. This condition affects everyone differently. I was diagnosed in November 2015 and have catalogued my own journey on this forum. If you are up let us know, if you are down let us know. Any questions ask away. Best wishes.

[BaseballGardener]

There has been excellent feedback provided here. 3 recommendations: 1. carefully watch your weight. There is a good chance you will lose weight, even during the "watch and wait, (W&W)" period. If you currently are taking any medications, then the doses may have to be adjusted due to weight loss. For example, if you are diabetic and taking insulin, the dose may have to be lowered. 2. If you do end the "W&W" term, be aware that the medication may cause bruising or inflammation which can lead to clots. 3. your immune system has been impacted and your body may become less responsive to vaccinations. My mom was 91 when diagnosed with CLL, ended W&W when she was 94 and passed at 96 and 8 months. My mom never responded to the Covid-19 vaccinations, despite repeated attempts. My mom passed due to cardiopulmonary complications but I believe the CLL was definitely a contributing factor. I wish you all the best, you have found an excellent support group here and the technology for treating CLL is always improving.

[InFlorida]

Good day:

Reading the information here, one needs to consider the location. The treatments vary between the US and UK. Remember, each one of us is different so don’t get hung up on some of the posters “info”. For example, I have gained weight where others have lost. I started treatments immediately, where others Watch & Wait. To avoid prolonging this post, research your particular situation and work with the doc’s toward a successful benefit.