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.

Mine went from 2.9 cm to 3.5cm in 3 weeks.
At the moment, I'm using a cannula; it is okay. I hope I don't have to do the PICC line. I'm doing 4 cycles instead of 6, as it is still an early stage, and they offered radiotherapy, which I'm not too keen on. They said after 2 cycles, they will do a PET scan to see if the treatment is working. If not, they will use a stronger chemo.
They said the hair will start thinning around the second cycle.

@kayakhala so glad it was caught early. And its meant to be really responsive so everything crossed its working. I am feeling so tired already and i havent even got my chemo plan yet. I dont really like the idea of the picc line but they say chemo can make the veins thin and harder to access . Im guessing they will review if radio is needed as sometimes from what i have read chemo will clear it up. Are you taking antisickness too

@mumof2bambinos Yeah, it depends on your veins. After the PET scan, you’ll know what stage you’re at, and treatment usually starts straight away.

What delayed my treatment was the activity they saw in my breast on the PET scan. They wanted to check whether it was malignant, so I was referred to the breast clinic for a mammogram, ultrasound, and biopsy. It took about two weeks for the results to come back, but luckily, it turned out to be benign.

After that, I met with the haematologist, who explained the treatment plan. I signed the consent form and started treatment the following week.

On the day of the infusion, they gave me four steroid tablets and one anti-sickness tablet. They also sent me home with more steroids to take—two tablets twice a day for three days, and a different anti-sickness medication to take three times a day, about 15 minutes before meals. I took it for four days and then stopped because I didn’t feel sick.

@kayakhala hi just checking in. How are you doing? Hows the treatment going xx

@mumof2bambinos Hi, I was gonna message you to check if you've started your treatment.
I'm fine. Yesterday, I had my third infusion of ABVD. So far so good. When I met my consultant, he said he would change my plan from 4 cycles+radiotherapy to 6 cycles of only chemo. This is because most of my nodes are on my chest and neck, the radiation will go through my heart and breast tissues and causes a long term damag or secondary cancer. I'm glad he changed it because I wasn't too keen on the radiotherapy.
How about you? How are you feeling? Any updates from the doctors?

@kayakhala so glad to hear your doing well and even better if they continue with chemo instead of radiation. I have been in hospital last few days as they have delayed my treatment and now told me i will be doing escalated beacopdac chemo which is a very intense chem so very scared and anxious. Also my heart rate has been a bit low so unsure how this is going to go. Will you be having a petscan soon to see if the abvd is working? Also have you had many side effects. I will be having chemo everyday for 3 days and then another dose on the 8th day.

@mumof2bambinos Yeah, I heard it's a bit more intense than ABVD. Join the lymphoma action group; they'll help you a lot with their experiences. This linkmy also help:https://www.macmillan.org.uk/cancer-information-and-support/treatments-and-drugs/beacopp

I will have a PET scan on the 24th of April. If things are good, they will drop the B as it causes damage to the lungs, and the research proved that AVD is as effective when the body responds well to the first cycles.

Three things helped me the most with side effects: drinking a lot of water before, during and after treatment. Like yesterday, I drank 3L of water, and I was sipping throughout. I also suck ice when given the red one, so many people said it helps with a mouth sore. The second thing is daily walks and being active. It helps with fatigue and muscle aches. The third is healthy eating. Get the book Eat to Beat Disease by Dr William Lee.

My worst symptoms usually start around day 5 and stop at day 8. I get muscle aches, bone pain, and find it hard to walk during the nadir period when my blood count is at its lowest. I rest during these days and take a lot of warm baths, showers, and use hot water bottles; they help a lot with the pain. The bone pain is a sign that the bone marrow is working again. I take paracetamol if it gets too much, but I have to check my temperature again. If it gets up to 37.5, I have to call them or go to A&E.

Other symptoms are constipation, which went away after I started taking Laxidoa the day before chemo. Tiredness, low mood after stopping steroids, mild pain when swallowing, mild nausea for the first few days, heartburn and indigestion. They are all mild so far.

Hi, my late teen child is going through this at them moment, they have had two rounds of escalated becopdac and have just started ABVD.

The things we weren't prepared for- the sheer number of pills and level of steroids - make sure they prescribe omezoprole or something similar as the steroids cause indigestion.

Sickness, initially we thought sickness was a side effect, it is, but it can be controlled. You get given the cheaper anti sickness, but if that doesn't work there are lots of other options (some are very expensive) but they stop the sickness.

Make sure you have a steroid warning card and if you have any symptoms call the chemo line. High doae steroids canmask a temperature, so if you start feeling poorly get help even if you don't have a temp.
I am happy to chat if you have any questions

@WakeMeUpInSilence i am so sorry to hear your child is going through this but glad to hear your child has got through the beacopdac. I am really struggling with this chemo. I am on the first cycle and third day of chemo infusion and im struggling to tolerate it. They have switched from omeprazole to lansparazole i think and they have given different antisicknesses but not sure which ones are helping as sometimes i still feel sick after the antisickness tablet. Is your child taking antisickness everyday regardless of whether feeling sick or notxx also thank you for replying it means so much

@kayakhala thank you so much for the link. I am really struggling with water drinking as feeling so sick always. Also i can feel a bit of a tight throat. I became really anxious when they said i have to do beacopp instead of abvd. I hope i can pull through this. Currently having my third chemo infusion

Hi @mumof2bambinosI’ve had Hodgkin’s twice - once as a teenager, and then again 20 odd years later. I had 6 cycles of escBEACOPP the second time - the first cycle was the worst re sickness. It’s very hard to stop sickness once it starts, so once they’d changed my anti-sickness things I would start taking them a day or so the next cycle started so that they were fully in my system. I didn’t have any sickness for subsequent cycles.

Obviously chemo side effects are cumulative so the side effects of cycles increases each time because you’re more run down as time goes on. The steroids are a god send because, despite the horrendous moon face they give you, they’re what keep you going - I used to quite enjoy the steroid-power of week 3, I don’t think my house had ever been as clean! I had quite bad mucositis towards the end of my treatment but by that point I knew things had worked and I was literally crossing days off a calendar to get it done!

You’ll have filgrastim injections to do each cycle - the jabs aren’t that bad but they can cause quite unpleasant bone pain. Loratadine (an anti-histamine) can help with the pain, but like the anti-sickness stuff you need it in your system ahead of time.

It’s by no means pleasant, but it is do-able and once your first cycle is over you’ll settle into a routine with it where you recognise that you have x side effect on y day but it’s usually gone in z days etc. The one benefit of escBEACOPP is that it’s a fairly quick process and whilst it might not seem like it, you’ll hopefully be out the other side in no time.

I second the suggestion of joining any support groups - there’s a good one on FB run by Lymphoma Action. It makes all the difference knowing you’re not alone.

Are you doing ABVD as well @mumof2bambinos my DC has at at least two rounds after the beacop.

Have you been prescribed mouth wash, it has helped with the tight throat, it is a saline wash and a mouthwash, I don't have the name with me but can find out if it helps.

Sickness - taking regular preventative sickness medication.

So their sickness medication on day three was

Ondansetron 4mg four times a day -this they continued taking for the whole time

Aprepitant - this is the expensive one but it made a big difference - they took this on days 1,2,3,4

Levopromozine, up to four times a day but it is a sedative as well.

We were told he shouldn't feel so sick he couldn't eat, and that they had more options if the pills didn't work. DC was hospitalised on day 1 due severe sickness but they have got on top of it. Don't be afraid to tell them you feel poorly, I think many of us are programmed to play it down.

@ThrowawayGoblin it returning is a massive fear, did you find that you were listened too when you started getting symptoms?

I can't join FB groups, here is so much smaller, for all the great help on FB, there are so many stories that are heartbreaking - I'm not capable to deal with that at the moment. I need to hold on that for 90% of people this is curable.

@WakeMeUpInSilenceIf I’m being honest, I did find I was ignored second time around. I didn’t have any palpable nodes and neither time did I have any of the B symptoms. My only symptom second time was joint pain in one joint - it got so I couldn’t weight bear on one leg and was walking with a stick. I kept being told to exercise more! Obviously it was a LONG time since my first diagnosis so HL wasn’t really on the radar and in (grudging) defence of my GP it was mid covid so there was a lot going on. Eventually I paid to be seen privately where once I’d had an MRI everything moved very quickly. I’ve been told I won’t ever be discharged from long term follow up, which is absolutely fine by me, but even now I’m supposed to be having check ups twice a year and I haven’t been seen for a year. That said, I have realised I need to be very proactive about things - I spent far too long not wanting to be a hassle, thinking I was being a wimp whilst my hip joint was basically being eaten by HL, so now if there’s anything I’m not sure about I make myself a hassle and that usually works!

With time you will learn to live with the worry. I won’t lie and say it ever goes away because it doesn’t. With time
though, it does ease off and become more of a background worry.

The cure rates are much higher than 90% - it’s 90% for first line treatment (or something like that). You have to keep in mind when seeing statistics that the figures are already years out of date. Treatment for HL is developing so quickly that the options available now aren’t reflected in the data. It feels like a very dark place when you’re in the middle of treatment, but please try to seek support where you can. For all the bad stories, remember there’s thousands of good ones who just haven’t posted.

Thanks @ThrowawayGoblin

I think you are right about needing to advocate for yourself, but it is difficult when it isn't in your nature. I am definitely more open to the idea of going private in the first instance , but we have been uncommonly lucky in how quickly it was all diagnosed.

It is helpful to hear that you have learnt to deal with the worry. Thank you for taking the time to post

@mumof2bambinos how are you today?

@WakeMeUpInSilence hey i dont feel too good. Im struggling with eating as keep feeling sick and feet just cant seem to get warm. Theres so many tablets to take and i just feel more nauseous.

What anti sickness are you on? We've been told to take it even if they don't feel sick to keep on top of it.

We found the pills overwhelming to begin with, and really hard to take them when the nausea was bad, which is why we ended up on stronger anti sickness. Please ring your chemo number if the nausea is intrusive, they can prescribe more.

I am thinking of you

@WakeMeUpInSilence thank you so much for checking in. Im feeling a bit better this last hour thank god as i have 2 kids with additional needs and they are struggling with me having to be away from them. The sickness medication i have been given is ondansetron 8mg twice a day. And also metoclopramide 10mg 3 times a day. Xx

@WakeMeUpInSilence also i am doing escalated beacopdac chemo i think they have said i will be doing 4 cycles. They did mention a mouthwash but when i have checked me medication bag they never put one in. So annoying as il probably have to go back to the hospital.

@ThrowawayGoblin thank you so much for sharing your experience. I did ask about 5 doctors about loratadine and if i can take that and still no answer. I might just take it as many people have said it helps.

I apprecaite everyones advice and help SO MUCH. Thank you all xx

@mumof2bambinosi would just take the loratadine tbh - sometimes the clinical team are so focussed on the hardcore medial stuff (understandably), that the side issues can be forgotten about.

Is this your first cycle? If so, the anti sickness stuff is unlikely to get on top of the sickness as it’s set in. BUT, it should work for the next cycle (start taking it a day or so before the cycle starts). It’s utterly shit that this is the way it’s done, but that’s the NHS for you. Hopefully once you’re past day 8 it’ll ease off anyway.

As an aside, try to avoid eating/drinking things you normally really like. It becomes hard to not associate them with feeling like shit/hospital stuff etc afterwards.

@ThrowawayGoblin thank you so much. Yes my first cycle and the first 3 days chemo absolutely floored me. Im a bit scared of the injections that i have to have for 5 or 7 days . Oh ok i will do. I dont really eat a variety of food but i feel like since on chemo im wanting foods with stronger tastes to get rid of that chemo metallic taste in my mouth. I will keep on top of the antisickness daily from now on and hope it settles. Thank you so much for your advice. Also these steroids are making me a bit dizzy ( im hoping that is normal!) .haha

@mumof2bambinosi was terrified about the injections, too. The first time DH did it and it was all a bit of a mess tbh - took several attempts. By day 2, I’d sacked him and decided to woman up and do it myself. If you grab an inch or so of stomach and sit with an ice cube on it for a minute or so it’ll help numb the area, then dry the skin, wipe with the antiseptic wipe and do the jab. You need to use more force than you think - skin is really quite tough! I found it easiest to almost do it like you’d throw a dart, that’s the kind of action/force you need. Swap sides each day and don’t worry if you get the odd bruise. Once you get the hang of it, it’s really not that bad I promise you. No one likes it obviously, but the fear beforehand is so much worse!

Days 1-3 are the worst with escBEACOPP. Day 8 isn’t great, but it’s nothing like 1-3. Days 9-21 are actually not bad as the side effects have usually subsided and the steroids have kicked in so you feel quite perky given what’s going on. If you haven’t shaved your head already, be prepared for it to start falling out from day 10 or so. I’d recommend preemptively shaving if you can - little bits of hair coming out is psychologically a lot easier to handle than handfuls of long hair.

Dizziness is probably from the sickness. Keep hydrated and try to keep eating. If you can maybe get some electrolytes or something which might help you feel less wiped out?

The first cycle is so bad because everything is taking you by surprise - next time you’ll know what to expect and when and that really takes the sting out of it.

@ThrowawayGoblin thank you so much for all the advice. Im struggling with sleeping even though i feel tired. Not sure if its because of the steroids although i do take these jn the morning. I have had a gassy stomach too and struggling with bowel movements and just a lot kf stomach discomfort which i think is making me feel more sick. Also started a little cough aftrr day 2 chemo. Not sure if this is side effects of chemo

@ThrowawayGoblin hi i am really struggling with constipation and bloating since i had the chemo. I was having normal bowel movements up until i had the third day of chemo infusion. I have taken 2 laxidos today 10ml lactulose magnesium supplments and cup of green tea and still nothing. The pain in my stomach is horrible. Any advice pleasw