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 ?
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My fingers are crossed for you as well. So important to listen to your body and take it easy when you need to 
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That’s great @Beagle about those lymph nodes shrinking, and thank you for sharing about it here. I’m sure it’ll be useful to know for someone coming to the forum with a similar concern as you.
Sorry to read of the fatigue though, I hate it personally. I have found trying to stay active has helped keep me feeling energetic, even when fatigued. Some folks around the forum do yoga, tai chi, Pilates, stuff we can even do indoors. I love a good hike when energy allows. You’ll know what sorts of activities you’ll enjoy. There’s some good tips here for managing and even undoing fatigue from Blood Cancer UK: Fatigue | Blood Cancer UK
Just wanted to ask, what would be the harm of attending your March appointment? You could speak to your specialist about how you’ve been and note any new or changing symptoms so they’re on record. I think with these chronic blood cancers it’s helpful to share even the small things we notice in ourselves, and our doctors can do the analysing!
I’ll keep my fingers crossed for you too @Beagle, please let us know how you get on with the new medicine.
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I have Chronic myeloid leukaemia ('CML') controlled as for you.
I am sorry that you have had recent worries. I always seem to get swollen glands whatever virus etc I get. I have never had a chest infection in my life it is just the way my body responds to anything.
The chemo pharmacist at my hospital gave me a chat before I got my first dose of meds and told me that the drugs are strong and that you are vulnerable too so never worry about checking any symptoms with either your gp but probably your consultant is the best. He said that my medication can affect me in different ways eg kidneys and liver and that is why the blood tests are so comprehensive. The patient know best what is normal for them and so be proactive it is not your team in charge, it is you and your team working together. I hate fussing but that did give me a bit more confidence to discuss things at my meetings instead of the “I am fine.” line which I would have been more likely to use. Do not let people say you are too anxious or overthinking. You are right to try and get your thoughts and worries in order. Time will help and the tests to give you answers. My best wishes to you and I am so glad that this worry has been put to bed.
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Thank you xx
I had my scan and no sinister signs so relieved and they are starting to go down so must have been either the meds or something brewing
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Oh that’s such great news about nothing sinister in your scan @Beagle. Time for a treat, as I always like to do after a good test result!
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