Introducing myself to the CLL support group.

[dinkdog]

Hi my name is Karin, I was diagnosed with CLL in January, 2019. I'm currently W&W. I'm here to learn and understand more about my disease. Issues are starting to arise and I'm now trying to understand the many progressions of CLL.

[Pin57]

Welcome Karin! Love your handle name dinkdog, you must be a pup lover? that’s huge in my book. My wife n I have a pair of long-hair weiner pups, they bring a ton of joy 😀.

You’ll enjoy this forum Karin, will definitely learn a lot and the people here are amazing.. very wise n very supportive. Ask away on any questions you have, none are stupid!

You will get a ton of great replies/advice n that says a lot about this community … and when you see an Admin or Volunteer reply they typically come loaded with awesome articles and info to read … truly good stuff n their advice is priceless. There is a special treasure chest of “pinned articles” by cajunjeff “CLL for Dummies” which are great readings on various CLL topics, easy to understand.

Well being in W&W, hopefully your current issues will not be major ones. Do you have a good CLL doc in your corner? … that’s huge.

Hopefully you’ll get a lot out of this forum. Look forward to your future posts/questions.

[dinkdog in reply to Pin57]

thank you for the information.. yes, I have a great doctor in NorCal @ the Comprehensive Cancer Center @ UC Davis. They have been wonderful in helping deal with the CLL.I look forward to learning more about this CLL as my disease progresses. I have had my head in the sand for too long, not really wanting to deal with my symptoms and the disease itself.

[DoriZett in reply to dinkdog]

Front loading your knowledge BEFORE you need treatment is a good way to go, Karin. I find understanding how things might unfold for my CLL Profile and getting my questions answered helps to allay fear and anxiety. We are all unique and things may not unfold for you exactly as they did someone else, but it's good to know the range of possibilities and what to look for and report to your CLL Specialist. Welcome!

[Pacificview]

Welcome, you will get some great info here...

[dinkdog in reply to Pacificview]

thank you!

[Palacialregalia]

Hey Karin! I just started Acalbrutinib in January, I was having a bunch of symptoms. Now I feel really good! Much better than I did before the medication! I can sleep through the night without sweating through three sets of clothes

[dinkdog in reply to Palacialregalia]

Great news.. Im glad to hear you are getting some relief with the medications. I look forward to hearing more about your journey with CLL.

[lankisterguy Volunteer]

Hi Karin / dinkdog

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Welcome to the club that none of us wanted to join.

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Since you said you wanted to learn- here is the syllabus for learning: healthunlocked.com/cllsuppo...

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The many links imbedded may take days or weeks to explore, but keep at it. There are many gems with great advice like:

The CLL for dummies series mentioned by Pin57 healthunlocked.com/cllsuppo...

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And one of my favorites The 30 tips: healthunlocked.com/cllsuppo......

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To decipher acronyms and MedSpeak terms see: healthunlocked.com/cllsuppo...

And go to the CLL Society for the CLL 101 course : cllsociety.org/cll-101/

cllsociety.org/toolbox/abbr...

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You can join one or more of ~30 support groups meeting by ZOOM at cllsociety.org/events/

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Len

[dinkdog in reply to lankisterguy]

Awesome.. thank you! I will read through all of it! Im kind of lost in this disease!! I think that I have found the right group to guide through my CLL journey.

[Phil4-13]

dinkdog, I am glad you have joined us. I am also in W&W 4 years, am 73 yrs young. There is a wealth of information and encouragement here. It is amazing what we learn here. 🙂 Sandra

[dinkdog in reply to Phil4-13]

Thanks you Sandra!! Im excited to learn more.

[Schubert1870]

Hi Karin,

Welcome! This group has been a godsend for me over the course of my cancer treatments. No question is too small to ask. I’m always learning here!

UC Davis is a good place to be at. I almost went there but settled on Stanford.

[kitchengardener2]

A warm welcome, I gain so much from our group here. I also join as many other forums as I can. I try to get involved in research programmes when I see them. I was diagnosed in 2018 and started treatment in August 2021 with Acalabrutinib. I feel that it is working and I feel incredibly well. I shall follow you to ensure I don't miss your posts. Stay safe and stay well Alice x

[dmmck]

Welcome. This group is a great source of information and support. It takes time to absorb so much information. Don’t be afraid to ask questions. Wishing you the best on your CLL journey.

[goldstream]

Hi Karin, I was on W&W for 12 years and now 1 year on Ibrutinib. I experienced the usual progression - increased levels, swollen lymph nodes, enlarged spleen, occasional night sweats, tiredness, sore joints, increased infections that took longer to heal etc. However, I was fortunate, as none of that slowed me down significantly. I did catch pneumonia just before I started treatment which wasn’t fun, but since treatment my levels are back down to where they were 6-7 years ago and I’m feeling great. The one big learning for me on this journey is ... don’t be afraid to start treatment early, before you get sick. Hope that helps.

[Jacksc06]

Hi Karin. Welcome to the family, a great forum for advice and support. Any questions ask away.

[Miggins60]

Welcome to the forum. I too am on W&W, 4years now! I learn so much here, so many knowledgeable people. No need to check on Google as here the info is much better quality and people are so helpful. Ensure you get your Pneumonia vaccines - I didn’t know about it at the start and caught pneumonia less than 4 months after diagnosis. I still suffer a bit from “long pneumonia” and would have avoided it had I joined this forum sooner. Wishing you well. Mags

[New-bee-cell]

Hi Karin and welcome. I am also W & W - since early 2020. Great information here an this forum. Lovely and very well-educated folks with lots of experience and encouragement. 🙂

[Lasweetpea]

Hi Karin, you are in the right place. This group is a wealth of information and support that will offer many perspectives and experiences. Find joy everyday🌻

[Hidden]

Karin

Hello & well wishes to you. Been on the forum since 2020 when my husband was diagnosed. He is currently w&w with most recent bloodwork very steady in terms of slow movement.

I am beyond relieved & enlightened since joining here. You are in the right place & glad you introduced yourself~

Enjoy the rest of the weekend!

Cookie~

[Fran57]

Welcome, Karin, from the U.K.My husband has CLL, but it is probably me who gets the most support and genuine comfort from the lovely, knowledgeable people in this group. I honestly don’t know what I would have done without it.

Someone will have the answer to any questions you may have, no matter how big or small.

Stay safe,

Fran 😷

[bkoffman CLL CURE Hero]

Karin,CLL is extraordinarily variable and many never need treatment. We are all different, and one size doesn't fit all. As other said, learn what you can, get a true CLL expert on your team (we have a list at CLLSociety.org), think about joining a CLL support group ( we have a ZOOM great one out of Sacramento and about in SF). I am 17 years into my CLL journey and it's been many times a wild and wonderful trip in my case. Let me know how I can help.

Stay strong, we are all in this together.

Brian -cofounder, CMO and EVP, CLL Society

[Big_Dee]

Hello dinkdog

I will keep it short. Welcome.