CLL/SLL Ongoing

[uide3095]

Hi all, I was diagnosed December 17th 2020, been told I have had CLL SLL for a while.

My only symptoms and still are that I have large swollen lymph nodes in my neck and groin hence it’s SLL.

I go to the gym and go into work although I’m now working from home again, I’ve had 3 vaccinations against COVID as well as the pneumonia vaccine and flu vaccine.

Will be starting on Acalabrutinib soon but still feel good in myself although sometimes my mind does wonder on what the future holds

[Walkingtall62]

Hi, welcome. Did you manage to get both pneumonia vaccinations. I wasn’t sure if I had ever had one, so had to have the two, taking the childrens one first, then after a while, the adult one. Take care and enjoy the festive season

[uide3095 in reply to Walkingtall62]

I had the pneumonia vaccination last year, it lasts 5 years apparently my flu vaccinations for the past 2 years and 3 COVID vaccinations so 🤞Merry Christmas to you all and your families 👍

[hope-73]

Hi, your situation seems similar to my husband's. Can I ask what is driving the decision to start treatment? Are your nodes affecting your wellbeing? Many thanks

[uide3095 in reply to hope-73]

Hi, no not as such but they are around 50mm to 80mm in my neck and groin and seem to be getting slightly bigger. My consultant has said treatment should help push it back and hopefully keep it at bay before I do get some of the other symptoms / illness. I would have been on treatment a few weeks ago but 4 of his other patients he is treating have ended up in hospital with COVID as treatment reduces your immunity still further, I’m back to see him on the 22nd Dec now so I’ll see what he says

[hope-73 in reply to uide3095]

It makes sense. I wish you all the best with your treatment. Take care

[BobbyFour]

Unfortunately I don’t have an answer for you, but I am in a similar situation. I started in July with maybe 6 grape sized nodes in my neck, and have maybe a dozen now - my neck is definitely now looking very lumpy. So I assume my treatment is around the corner. Otherwise I feel perfectly fine! I have searched a lot on the forum, and the vast majority of folks see their nodes shrink once they start treatment, often quite quickly. For most the medication is quite tolerable. I know. as I made a list of all the positive stories to cheer me up when I need it 😀 For folks who start one of the inhibitors as first line therapy, the results are extremely impressive. The majority are still on it approaching a decade. I cling to this hope 😀

[New-bee-cell]

Hi! I was diagnosed with SLL in March 2020 by biopsy of persistently enlarged couple of nodes. Blood results all still in the normal range. My nodes swell and shrink depending on recent immunization or when fighting off infection. CT scan showed mildly to moderately enlarged nodes in many places (all still under 2 cm) but no enlargement of spleen. Hemo-oncologist guesstimated 5 to 7 years before I would need treatment. Approaching the 2 year mark now, with no major changes (incremental decreases in platelets but still in range/ increasingly ridiculous reactions to mosquito bites). Spending my Watch & Wait time getting the pneumonia, shingles, influenza B etc. immunizations up to date (before starting immune suppressing treatment) and finding a dermatologist to watch for secondary skin cancers — and, of course, all the Covid vaccines I can get my hands on!😁

Stay safe and enjoy the support on this forum!