Starting 2025 with a mix of feelings.

[holeinthespeaker]

It’s another year of “wait and watch,” but next year I’ll likely begin some kind of treatment, possibly in February. Despite my white blood cell count hitting 113k at the end of November, I’m still asymptomatic, living a normal life, and staying committed to my physical activities.

That said, the prospect of imminent treatment and noticing my lymph nodes growing behind my ear make me feel anxious at times. Still, I feel like I’m gearing up for what might be one of life’s biggest challenges.

Just some year-end introspection. I hope everyone here has an amazing year ahead, filled with good health and happiness.

[Homebody123]

Hello I felt like that and dreaded going onto treatment but actually now that I have started (ibrutininb and venetoclax will be added in next week) I feel much better and the fear of treatment was much worse than the treatment itself (so far at least!). I hope you find the same if and when you start.

[Sepsur in reply to Homebody123]

ditto

[jerryjerry in reply to Homebody123]

I had this same treatment some six years ago. I took the drugs for fifteen months as part of a clinical trial. There were a number of side effects for me. Each was treated by the doctors and nurses with good results. I ended up MRD- in both blood and bone marrow. Today, there is still no sign of CLL, but my doctor at the time thought it would come back some day.

Most of the people in the trial did as well as me. So, hang in there.

Best wishes and a happy new year.

[holeinthespeaker in reply to Homebody123]

Thank you for your message, I hope the same happens here.

[lankisterguy Volunteer]

Hi holeinthespeaker,

You may have many months or years until treatment is needed. WBC is not an indicator for treatment, and if any doctor is using that, or has concerns about blood clots from a high WBC, then you should find a better informed hematologist.

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Although it is from 7 years ago, this pinned post is still appropriate: healthunlocked.com/cllsuppo...

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And when you have time and the patience to self educate on CLL, please follow all these very detailed links to learning opportunities: healthunlocked.com/cllsuppo...

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Please keep us informed, especially since you are in a country where we have very little knowledge of the medical systems and patient experiences.

>

Len

[holeinthespeaker in reply to lankisterguy]

Actually, my doctor said we would make a decision together in February, which is our next appointment. He made it clear that it will be a joint decision in case I’m experiencing any discomfort or worsening condition. For now, I just have some enlarged lymph nodes behind my ear, not a big deal for me.

[Sepsur]

as others have said - expectation that treatment would be cataclysmic was erroneous.

I was so ill by the time I started treatment that it was a relief - I’m not going to lie - it did get hairy at times. Best wishes for the year ahead

[Carmen11]

Hi, I thought I was reading about me....

I wish you the very best of outcomes.

🍀

[holeinthespeaker in reply to Carmen11]

Thank you!

[DancinGal]

It is very natural to be fearful before starting your first treatment. I was diagnosed and had my first treatment at age 41. I'm now 71 and in remission after my 4th type of treatment. Except for having to take precautions against catching COVID and other respiratory illnesses, I've been able to live a rather normal life. You can, too! All the best to you.

[holeinthespeaker in reply to DancinGal]

Wow! Four times! That must not have been easy, but it’s great to know you’ve been on this journey for so long. Thank you for your message.

[DancinGal in reply to holeinthespeaker]

The four treatments weren't so bad. I was able to continue working throughout, rarely needing to take a day off due to side effects. I contacted my doctor whenever an occasional side effect was bothersome. (I saw no point in trying to "tough it out"; there were ways to address most side effects.) I got through each treatment one day at a time, encouraged by the rapid response to each therapy.

As you're aware, there are many CLL treatment options today. If the side effects to one treatment become problematic, another effective treatment will typically be available.

When I was first diagnosed and in a panic about whether I'd be able to raise my then-3-year-old daughter, I couldn't have imagined that I'd get to see her grow up, become a medical doctor, get married and have my first grandchild (3 weeks ago!). I created my bucket list at age 41 and got to do most everything on it. If there is a silver lining to having lived with CLL all these years, it's that I might not otherwise have been as purposeful about my priorities nor as appreciative of every day that I'm still here. Live long and prosper!

[holeinthespeaker in reply to DancinGal]

What a coincidence! My daughter was one of my biggest worries, she was 2 years old when I was diagnosed. I always look at her wondering if I will be able to see her reach adulthood.

[holeinthespeaker]

Thank you all for the messages! I was a bit offline with my family during the New Year, so it took me a while to reply.