CLL IN 40s

[halyard]

I'm 43 and have three young children. I was recently (11/2021) diagnosed with CLL and began treatment with Gazyva. I am seeking out others in my age group to share experiences. Please reach out if interested-

[llamazen]

Hi there,

I am in the same boat as you. Diagnosed last year at 41 and currently in W&W and hoping to not need treatment for a while

[Detroit22 in reply to llamazen]

How can you be treated so soon? I’m 57 and all they have done is the wait and see what happens. My last blood work came back with the largest jump and still my doctor is not doing anything. Please tell me your doctors names so I can talk to them.

[AussieNeil Administrator in reply to Detroit22]

Detroit22,

CLL is an extremely heterogeneous illness. Some of us never need treatment, others might need treatment years after diagnosis - the median is around 5 years and unfortunately a few of us do need to start treatment very soon after diagnosis. That said, CLL is also not that common, (it's officially an orphan disease), so anyone seeing a general oncologist is more likely to have treatment suggested before necessary and may not have appropriate tests done to determine the best treatment for them. That's many of the reasons why it pays to see what we term a CLL specialist - someone who concentrates primarily on CLL and keeping up with the fast changing treatment options, sees lots of CLL patients to become familiar with how to manage less commonly seen issues and perhaps writes papers on CLL.

This pinned post covers several commonly used guidelines for the diagnosis, management and treatment of CLL patients. Halyard can check if he fits the triggers for starting treatment: healthunlocked.com/cllsuppo...

As both of you live in the USA, you can request a free second opinion from a CLL specialist through the CLL Society's Expert Access Program: cllsociety.org/cll-society-...

Halyard,

It would be interesting to know the reasoning of your specialist for treating you with Gazyva, which is an anti-CD20 monoclonal antibody. It's a limited term (6 months) targeted therapy and should quickly bring your CLL under control. Currently due to pandemic concerns, it's more usual for the first treatment to be a maintenance treatment such as one of the BTK inhibitors Acalabrutinib, Zanubrutinib or Ibrutinib (slower acting) or the BCL-2 inhibitor venetoclax (faster acting, but again may require hospital visits). Gazyva brings with it the complications of hospital visits during this pandemic, with the availability of hospital services and infection risk of increased concern. You are also unlikely to respond to vaccinations for up to a year after your last infusion.

Finally Halyard, you've posted unlocked, which means you have an increased likelihood of having responses from new members in a similar situation to you. You may however wish to keep your post private to the community. This post explains the difference between posting locked and unlocked and how to change your post to locked if you wish to do so: healthunlocked.com/cllsuppo...

Neil

[halyard in reply to AussieNeil]

Thanks! I'm heading to Seattle next week to meet with a CLL specialist and I'll definitely ask that question. We live in Alaska and options for specialists are limited. I was under the impression that G&V were the pretty standard route for my diagnosis, but I honestly got very little information from my oncologist here.

[AussieNeil Administrator in reply to halyard]

Ah, this now makes more sense! You hadn't mentioned also taking venetoclax/Venclexta in your post or your profile! (You can amend your profile via this link: healthunlocked.com/profile/... ) Venetoclax+obinutuzumab (Gazyva) is indeed a standard treatment, but to confuse matters, Gazyva was previously approved in combination with a very old chemotherapy drug chlorambucil and it's not uncommon to be prescribed just the Gazyva, which doesn't tend to give long remissions. Good to hear that you are seeing a specialist in Seattle, as it's still worth establishing a relationship with a CLL specialist to support your local oncologist.

Neil

[halyard in reply to Detroit22]

I live in Alaska, pretty sure you can find someone closer My WBC was 176 and climbing. I think that contributed to the decision to treat.

[dfksll]

Diagnosed last year at 47. Started treatment with acalabrutinib a year later. I have 3 kids too, with the youngest ones just out of the elementary school... Hope Gazyva works for you.

[Neblinosa]

I was also diagnosed Nov 2021. I'm 44. I see both a local oncologist and a CLL specialist. I was given a prognosis of 3-4 years before needing treatment.

Glad you are going to see a specialist. I left my locals office with a lot of unanswered questions. I tried to pull info, but he was very vague with response. I could not tell if it was manor or he Judy didn't know. My specialist visit was the complete opposite. She explained most things before I even asked and walked me through each of my markers.

My local had done a very detailed work up that she appreciated. There were only a couple unique tests she added to my blood draw that day.

I wish for you a very informative visit in Seattle. This site is very helpful.

[Teddo]

Halyard-

Welcome to this forum. You will receive much good info and support here.

There is a Facebook group for CLL pts who are young. Sorry I don't know much more than that. I think it may have been started a few yrs ago by two young women in the Chicago area.

[Oblivion85]

Hello,I'm 48 and 3 days ago i was diagnosed with CLL after initially being diagnosed with MBL in 2019 or maybe earlier can't remember anyway i am awaiting a full CT Scan to determine my treatment. My diagnosis came about after my B cell count put me in the MBL category then in the last six months it rose to 19 then 22 when tested the other day. Over these six months i have suffered severe fatigue, bloated stomach, chronic pain in my midriff especially on the left side of my body, palpitations and headaches. These symptoms prompted my GP to send me to a Hematologists hence now i am here conversing with you like minded people. I am still trying to wrap my head around this and feel uncertainty until i have had my scan and given a course of action. The hardest part for me so far is telling my family(i still haven't told my mum and i haven't told my oldest daughter who is currently in training to be a Police Officer as i don't want it to distract her)

[AussieNeil Administrator]

Hi and welcome Oblivion85,

I see that you have just joined our community, so I would recommend you check out our pinned posts section here, for helpful posts that will reduce your feeling of uncertainty and assist you to live well with CLL:

healthunlocked.com/cllsuppo... in particular this post:

Newly diagnosed with Chronic Lymphocytic Leukemia or Small Lymphocytic Lymphoma - CLL/SLL or just found us? This post is for you!

healthunlocked.com/cllsuppo...

Neil