Swollen lymph nodes & other symptoms

[twoboymum1985]

Hey all, before Christmas I noticed 2 swollen lymph nodes. 1 below my ear and another between my jaw and neck. Since then I’ve had another one come up under my lower jaw. Had terrible ear ache but the dr said my ear is blocked with wax so they cannot see inside. They gave me antibiotics although I explained I haven’t been unwell. Following this my collar bone statues protruding and I would get a burning sensation from my lower head, down my neck and into my shoulder. This has been continuing and shows slight relief when I use painkillers. Then had a weird vomiting bug for 2 days. Antibiotics have finished, ear pain is still there, lymph nodes are still swollen and pain is now intermittent in my shoulder. Collar bone is no longer protruding but one of my tonsils (all on the same side) looks different. I went to urgent care who did an xray, nothing to report. Bloods were done, all normal. Visited the doctors 2 more times and been prescribed painkillers. Eventually referred urgently to head and neck on 2ww. My mind is now going a million miles per hour that something is seriously wrong. I’m a 40 year old female. Never had swollen lymph nodes before. I suppose I’m asking if someone has had anything similar and it hasn’t been sinister. I’m very nervous.

@mumof2bambinos you want movicol, taken regularly over the full course, sorry forgot about that.

It will say two sachets but that is usually too much, build up slower, DC is on half a sachet once a day- it works in a different way to laxatives, it builds up the fibre and water content, but needs to be used over a longer period.

Have you spoken to anyone about your cough?

The injections are ok, but will make your bones hurt. I'm sorry this is all so shit.

@mumof2bambinosSorry, I had the opposite issue and was trying to bung myself up! I think@WakeMeUpInSilenceis right though, in that like the anti-sickness stuff, it’s got to build up in your system to have an effect.

If it doesn’t resolve, it might be worth asking your clinical team for some advice for your next cycle - there might be an equally good anti-sickness tablet that doesn’t cause constipation or something (anti-sickness tablets do cause constipation in general, I think). But I’d definitely start by getting some movicol in you, stay hydrated and try to keep moving because that’ll help. Be gentle with yourself though - your body is really going through the wringer at the moment and it probably doesn’t know which way is up. Give it time to settle - take things slowly as far as possible just try and go with the flow (I realise how stupid this sounds - but I found it helped visualising myself in one of those rubber doughnut ring things whizzing down a choppy river; if I just hold on and trust the rubber ring I’ll get home!).

How @mumof2bambinos are you doing?

We are back in hospital, it is the unexpected that we are having to get used to.

My biggest thing is to not suffer in silence, if things are bad tell them, there are options for all side effects.

@WakeMeUpInSilence i feel like i have started getting a phlegmy cough thats been lingering around as it is for weeks. Oh no! How come your back in hospital? I hope you are doing ok. I ended up doing a suppository (sorry tmi) because i felt so bloated and backed up and thats helped a lot. And on a night i feel like i sweat and then feel a bit cold bit my temperature is ok. So im not sure if thats a chemo side effect or i should be concerned.

@WakeMeUpInSilence hey just checking in? How are you doing xx

Thanks @mumof2bambinos for checking in with me

Had a rough few days, another reaction to the medicine which is meant to stop the side effects of chemo.

It seems often than young people respond differently to older people, and most probably it is older people who have tested it out.

You said you are having four rounds, is that all of escalated?

Hope you are feeling a bit better, we found day 12 tough as became neutropenic, again I wish we were a bit more prepared.

Sorry that was all a bit rambling. We are very lucky as have a Teenage Cancer Trust Ward within travelling distance (not our local hospital but worth the drive) it means that our DC can always have someone with them and the carer gets a bed, but with the stress and the checks sleep is still hard, feeling it tonight. (And that is a drop in the ocean to the chemo side effects)

@WakeMeUpInSilence aww im sorry! Hang in there. The chemo is hard enough as it is without these reactions. But your in the right place in being monitored although not much rest. I do feel like this escalated beacopdac is very intense. Im struggling and im only on cycle one and they consultant has this expectation that being 34yo means i should be able to tolerate it well which i dont think i am tbh. Yes my treatment plan said 4 cycles of escalated beacopdac to begin with as can be increased to 6 cycles. This has absolutely wiped me up.

@kayakhala heyy just checking how you are getting on? Hopefully you have had your petscan and things are looking positive xx

@mumof2bambinos Thank you for checking on me. I just came back from my 5th infusion. I feel very sleepy and can't keep my eyes open.
I also received my PET scan results yesterday; the doctor said my body responded well to the treatment and he dropped the bleomycin, so now I'm having only AVD. How are you?

@kayakhala aww youre doing well. Hang in there. Youre nearly there. Rest as much as as with each chemo you will feel more and more fatigued. I am so pleased to hear that. Bleomycin is strong so hopefully the remainder treatment is a bit easier. Im not doing so bad thank you. I am on escalated beacopdac chemo which is very intense. I have a petscan in a weeks time to see if im responding. Im hoping i get some good news as im ready for this to be over and done with xx