Just diagnosed

[Jhoover1014]

Just received my diagnosis today of CLL. So glad I found this group. Now the future doesn’t look so grim.

[Cllcanada Top Poster CURE Hero]

A warm welcome from a 20 year veteran.. 😃

[Jhoover1014 in reply to Cllcanada]

I put my comment in the wrong spot I guess. 😊. Have you not had any treatment for CLL in 20 years?

[Cllcanada Top Poster CURE Hero in reply to Jhoover1014]

I had a 14 year watch and wait... then treatment... its considered pretty good, but I know a few patients who haven't been treated in 20 year and one or two haven't been treated in twenty five...

It varies tremendously .. some patients require treatment inna few years, others in the 5-8 year ranger and others at 13-15.

~chris

[Cllcanada Top Poster CURE Hero in reply to Cllcanada]

Here is an excellent patient guide... take it slowly... it's not rocket science, 🚀🚀🚀but most days it seems like it is... CLL is a work in progress, we actually know very little about it...

nccn.org/patients/guideline...

[Jhoover1014 in reply to Cllcanada]

Thank you for the booklet! Very informative. When do Dr’s normally suggest treatment? Is it a certain WBC count or symptoms or something else?

[Cllcanada Top Poster CURE Hero in reply to Jhoover1014]

Its a mix of things... forget your white blood cell count [WBC] its a poor indicator of CLL progression use the subset count or 'differential' called absolute lymphocyte count [ALC] ... not the percentage, the absolute count.

B symptoms, node involvement etc. play into the mix, as do falling blood counts like Hgb, and platelets, CTscan results etc.

It the overall big picture that starts a treatment discipussion and things don't get rolling until you absolute lymphocyte count [ALC] gets higher than 30K.. then your doc will look for the absolute lymphocyte count [ALC] to double in under 6 months.. or so...

Test to test counts are interesting to track but variations mean little, its the big picture over time, often years...

Its part art part science...

~chris

[sun_flower in reply to Cllcanada]

I have had indolent cll since 2006 so long may it last. Welcome

[Ironj]

Hello Jhoover .. glad you joined this Group. It was a blessing for me to see that there’s people I can ask questions. When I found out a few months ago it was the world ended for me, I thought the worst. Until I seen my oncologist that same day. I was put at some comfort level after meeting him and having him tell me, don’t be alarmed. You have SLL/CLL that’s a VERY VERY Slow lazy type of cancer. He indicated that people can live for decades and some may never have any symptoms. And if I need treatment at some point the drugs are very effective up to 90%. In controlling it. There’s great people with a wealth of knowledge on this forum that have always been very helpful for me. Best of wish’s John

[Cgolen99 in reply to Ironj]

Welcome! My Oncologist told me all of the above exactly, and she added, “you will be ok, with the treatments being so good now, you are very likely to die of something else.. “. I hang onto that everyday.. (diagnosed in 2013, probably had it since 2010, just started treatment in April, age 55, FYI)

[DMary]

Welcome! I've found this a helpful and forgiving place to jump into the online support world. Glad you've found us too!

[YelvertonDevon]

An amazing group with a wealth of information and mixed with huge amount of encouragement I too am blessed to have found this site.

[TimHB]

Welcome to the club no one wants to be a member of! The first things you should know are no two cases are the same, and it essential to get as many opinions from CLL specialists as possible, not just hematological oncologists. If your doctor isn't facilitating this for you, you need a new doctor. I've traveled to Columbus Ohio, Boston and San Diego and my diagnosis varied wildly from Stage 0 "probably" mutated, watch & wait to Stage II, UNmutated and rushed into immediate treatment - and it's only been 12 weeks.

[thb4747]

Hi there and welcome from a 17-year veteran. I haven’t had an easy ride but I’m still here and new treatment options just keep coming. A story I’m fond of telling is that an accountant friend of mine went to live in the UK in the late 1960s. He was recently married and set up a business there, and life was pretty good. He got a phone call from his mother one day to tell him that his 70-year-old father had been diagnosed with CLL and that maybe he should return to New Zealand so he could spend some time with his father before he died. His father died 24 years later in a car crash!

[G1llHa1n]

Welcome to the club no-one wants to join. If you must join, it is a club probably more optimistic about prognoses than it ever has been and it is always helpful. Our hope for you is that you will live long and prosper - as the saying goes. When my CLL specialist diagnosed me he also told me that around a third of patients never need treatment - here's hoping.

[Kokobean]

Welcome! I think you will get a lot of hope and encouragement here. There is so much progress being made on the CLL front. I’m so glad you found us!

[SMS-not-cll]

Welcome from a four-year CLLer, but a newbie to this site. Wonderful information, links, knowledge, insights, and compassion are shared daily by many members of this community.

Wishing good days and good health to all.

SMS

[lynnsb6754]

I received my diagnosis on April 10, and must say that the supports available online are remarkable... I've gone from feeling scared and distressed to feeling like I'm on a journey with a lot of kind and generous people who make for good company. Have you found the CLL Society? They run support groups, and I already found one in a nearby location that begins this month. The person running it, herself a CLL patient, contacted me within a day of my inquiring. Patient Power is also a terrific resource and I've learned a great deal from the videos on there that explain different aspects of this disease, testing, treatments, etc. I'm scheduled for a conference outside of Cleveland on June 7 run by the Leukemia and Lymphoma Society, and on June 20 am starting participation in a "natural history study" run through NIH. Don't mean to overwhelm (would be happy to elaborate if you're curious about any of those things), but welcome to this journey that none of us would have chosen!

[BeckyLUSA]

Welcome! You will find a wealth of information and encouragement from this group. They are the greatest! Would not have made it nearly as well without them. Try to learn as much as you can about the disease and use your knowledge. You are your own best advocate.

BeckyL USA

[Mwagne]

Welcome. You will find a group of caring and knowledgeable folks

[mhpetvet]

I am also new to the group. I signed up a few days ago and this is my first time posting. I was diagnosed 7/7/16 and I'm also W&W. Glad to have found this group!

[Ironj in reply to mhpetvet]

Happy to have you with us ! John

[Jhoover1014]

What’s your WBC count like?

[GMa27]

Welcome!

My dad had CLL for 30 years...never needed treatment. Lived to 94! I have been on w&w 12 years. During a routine physical in 2006 my WBC was 10.3. My doc suspected CLL. Went to hematologist oncologist immediately. After BMB and FISH, Flow tests...it was confirmed. Fast forward 12 years, still feeling great, I am 63 and starting treatment next month. Treatment was suggested last year due to HGB dropping. Went for second opinion with a CLL expert and he agreed with my local hematologist oncologist. Just had CT scan and BMB (bone marrow biopsy) In 2 weeks will go over final results and see if my doc still thinks I am ready.

Important to have a hematologist oncologist and if your lucky enough to live near a CLL expert. My WBC around 210. HGB 9.0. Platelets 120, mutated and 13q deletion.

You will also find out thru testing if you are mutated or unmutated. If you have deletions.

Lots to learn but take your time and glad you found us! I didn't seek sites till 9 months ago.

Alice USA

[Jacksc06]

Welcome to the family, a great source of support & information.

[kay9hayes]

This group has been a blessing. Diagnosed less than a year ago. They are so knowledgeable and down to earth.

[Mystic75]

Welcome to the forum - you definitely came to the right place! My husband was Dx in 2009 and started his first treatment in early March. Currently he is on ibrutinib and doing very well.

There is a tremendous amount of research going on - it really is amazing