Hi all …just needed to put it out from my mind as anxiety is sky high…..
I have Chronic myeloid leukaemia ('CML') diagnosed 2023 and stable …taking dasatinib but have had missed doses due to side effects and work commitments…much better now and working with clinical psychologist to practice compassion focused therapy …
Anyway I have new swollen lymph nodes on my right side of neck. Been there over 2 weeks…not unwell..no sign of infection…lump is firm and painless…over last few days more swelling under that one …feeling nauseous…
I keep telling myself it’s nothing but anxiety running away with me …been trying to get to gp but no appointments..haematology have agreed to see me tomorrow…
Has this happened to anybody else?
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Hi @Beagle
I’m not dealing with Chronic myeloid leukaemia ('CML').
My diagnosis was Myelofibrosis.
While there are no other signs of issues I would definitely suggest bringing to attention of your clinical team.
One thing I was told was to flag any issues asap.
Don’t worry if it turns out to be nothing your clinical team will just be glad you have flagged.
Hope that helps
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Thank you …my bloods are fine and I don’t want to waste their time and worried just my anxiety
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Hi @Beagle, I’m hoping you’ve been able to get to your haematology appointment today and that it’s brought some reassurance.
Do come back and let us know how you got on if you feel up to it. We’re thinking of you.
Take care,
Ceri - Blood Cancer UK Support Services
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Good luck with your team. Let is know how you get on..Sometimes our anxiety gets the better of us but sitting back and worrying is worse. So be positive get checked out and get results xx
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They moved it to see my consultant tomorrow so another day of anxiety:(
I went to go surgery and saw ECP who checked my ears nose throat sinus and chest nd aid no evidence of infection said keep my appointment tomorrow with my consultant
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They moved my appointment to tomorrow
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It’s understandable that you are going to be worried and anxious.
I’m really glad your consultant has agreed to see you. It’s always better to get these things checked out.
Please let us know how you get on tomorrow.
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Hello there @Beagle, I’m really sorry to read of that sky-high anxiety. Can’t anxiety be rubbish?! Just wanted to say it’s great that you didn’t let the worries freeze you in place and instead you sought information. Good stuff. I’d say it’s to be expected to feel anxious when new or different health issues arise as living with a chronic type of blood cancer can already be so anxiety-provoking! I’m sorry you’re feeling this.
What might your therapist say to help manage the anxiety, do you think? Have they shared any techniques or tips for slowing down anxious thoughts and breathing? I live with PTSD and anxiety is its main symptom. If you’d like me to share an exercise or two that helps calm anxieties then just ask, nothing to be ashamed about.
Funnily enough, I occasionally get swollen lymph nodes, like right now. I realised I’m kind of feeling a bit run down from some poor sleep and overdoing it elsewhere and my body is showing me. Prior to my diagnosis with Polycythaemia vera ('PV') in 2023 I had painfully swollen lymph nodes which I had checked out and were likely a sign of my immunity being affected by a virus and not by the undiagnosed Polycythaemia vera ('PV').
Although I am not a doctor, what mine suggested I do was apply warm compresses (clean flannels soaked in cooled-down boiling water) over the affected lymph nodes which helped reduce the bruised sensation. Pass this by your doctor first, of course. It is never a waste of their time, they are in the caring profession and want to help.
I’ll be thinking of you tomorrow, please let us know how it goes.
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Hi all …been to see consultant….im on dasatinib…she’s has seen swollen lymph nodes at month 20 in four of her patients …im at month 24….no signs of infection …done bloods …sending me for biopsy as may be lymphoma as one patient had …but may be a rare side effect of dasatinib ….only way to be sure if biopsy…..switched me to scemblix ..:forgive spelling need to research it x
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Hello @Beagle, thanks for letting us know how it went. Okay so that’s some further waiting for tests and their results. Not ideal, but it sounds like there are treatment options available for the various results. It could be a reaction to medicine. Time to find some healthy distractions I’d say, and perhaps avoid Dr Google.
Forgive my ignorance if this is common knowledge but I did not think Chronic myeloid leukaemia ('CML') tended to progress to lymphoma. Did your consultant infer that the medication may have something to do with the swollen lymph nodes?
Lots to think about and I know I’d be worrying and wondering about it. If you would you like to call the Blood Cancer UK specialist nurses you can pass all this by them, their number is 0808 2080 888.
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Yes consultant said Dasatinib can cause a rare side effect which makes glands swell …forgotten the name ..said she has seen it in couple of patients on dasatinib…said only way to tell is biopsy…said one patient did develop lymphoma however this is extremely rare and not connected to Chronic myeloid leukaemia ('CML') …said now I have stopped dasatinib it may just go down ..either way I’m glad I did go and not wasting everyone time …hoping change of meds will be ok ..but anxious to start it
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Glad to read that you’ve seen Consultant @Beagle and sounds like Consultant familiar with what’s going on.
Hopefully get your biopsy scheduled soon
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Hi @Beagle, please never worry about wasting anyone’s time - it’s exactly what your team is there for. It sounds like your consultant is on top of things, which is reassuring, even if the waiting period before the biopsy results and the anxiety around changing medications is of course difficult.
On the Scemblix front, we don’t have a specific page for it yet, but there’s a forum thread from someone who was started on asciminib for CML (which is the generic name for Scemblix) and it might be reassuring to read how others have found it. Our CML treatment and side effects pages also have general information about switching between TKIs that might be helpful as you prepare.
And if you’d like to talk any of this through while you’re waiting, our Support Services team are there, as mentioned by @Duncan (thank you!). You can also reach them by email at support@bloodcancer.org.uk if that feels easier than calling.
Take care,
Ceri - Blood Cancer UK Support Services
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Good news since stopping dasatinib the lymph nodes are reducing 
so points to be side effect of dasatinib.
Switched meds to scemblix and except from bit of nausea and terrible fatigue all ok..had a lazy few days …fingers crossed this will be the drug for me to get my life back !
I have uss scheduled for March 16th….should I cancel now they are reducing or go to be safe all ok ?