Hodgkin’s lymphoma

Hi and welcome to the Community.

So I had a rare type of skin NHL and a different treatment journey but many out of hours hospital visits and a few with blue lights.

Chest Infections, Lung Fungal Infections, the RSV Virus, Pneumonia x2, Sepsis x 2 and A Fib resulting in over 30 nights NHL DB&B....... but I never once sat in a waiting room.

It is important to have all new or ongoing issues checked by your team or a least by your GP...... you can’t take chances.

If I developed any issues out with normal GP hours we would call 111 and talk with a medical professional - you are on strong chemo for a blood cancer so they will take your rather seriously.

When they felt I needed checked out they would either send the out of hours GP, tell us to go the hospital or even sent an ambulance and every time I was taken straight into admission and assessed immediately - no hanging about...... so from 111 call to admission no more than an hour...... once 30mins.

It’s obviously your choice.... but fir me on one occasion it was touch and go - you never know.

Putting some information in your profile can help a lot Click here to see how to add details as this helps everyone to see a little about you and your journey.

Hi ,

as the Mum of an HL patient i would say don’t ignore stuff like chest pain; BUT if you do end up in A&E at any time you should tell them you’re having chemo and therefore should NOT be waiting in a public area due to risk of infections. 

Ask your chemo specialist nurse for help, they are a godsend and know all the possible use effects, plus you’re possibly inventing extra ones?

Really hope things improve for you 

Hugs xxx

ps, and they would MUCH rather you bother them than take any risks, it’s your body and you do know it....

hugs xxx

I'm 36 and finished treatment for stage 3 in November.

One of the first things that led to my diagnosis was an incident in Dec 2018 where I woke up with terrible chest pain. It was worrying to the point that I called the NHS 111 emergency line and they wanted to send me an ambulance. Like you after walking about for a minute it went away but I went to the emergency room to be safe. I ended up getting told by some complete berk that he thought it was acid reflux problems, which it absolutely was not as I've experienced reflux many many times. He wouldn't listen though

My PET scan revealed one of my affected lymph nodes in my left chest so I'm thinking it was that. I had terrible similar pain with my lymph nodes in my neck, especially when sneezing.

Where abouts are your problem lymph nodes? Are any in your chest area?

I also remember feeling very sore in lymph node areas after my first few treatments. I'd say probably until about half way and I had 12 treatments in total over 6 months.

Any time you're worried you should call your treatment ward or your haematologist. If you feel you need to go to the emergency room you should have a card that you can show them to get seen right away.

I had to go once with what I believed to be an infection in my hand where they put the chemo in. I got seen in about 25 minutes.

Hi Brushies. Thanks for replying. 

The effected lymph nodes are in my neck only... nowhere else thankfully. 

I have never had any pain or discomfort in the nodes, in fact I have never had any signs of cancer apart from swollen lymph nodes in my neck that I originally ignored (assumed it was swollen tonsils or something) until a couple of months past and they just kept getting larger in size. 

My local hospital is a bit of a joke unfortunately. It's very well known for being rubbish and has been under special measures for years now. In fact, when I was referred to the hospital by my GP after inspecting my lymph nodes, it took them 8 months, god knows how many scans and 3 biopsy's to confirm that I DIDN'T have cancer and that the lymph nodes would simply burn out and go away on their own. 

Although I was happy with this news at the time I just didn't feel sure as I have no trust in the hospital but I decided to take the good news and try to continue with my life. That lasted a month or so but then I was sure that the lumps in my neck were growing and not shrinking. 

With this I decided to go private this time round. Cost me a few hundred quid but within 2 weeks I had a PET scan and another biopsy but this time the diagnosis was Hodgkins lymphoma. I have been assigned to 2 cycles of ABVD followed by a yet unknown amount of radiotherapy (to be decided). 

As you can imagine I wasn't best pleased with my hospital for misdiagnosing me. If I had taken their advice the cancer could have spread to other body parts by now and I could have been in a pretty different situation. Luckily I took it upon myself to go private and it was the best few hundred pounds I have ever spent. 

I had my second chemo on Monday and so far I feel ok'ish. Its difficult to explain as I don't feel poorly in the typical sense but I definitely feel different in lots of ways. My taste has gone and so eating isn't fun for me at the moment but apart from that I have been able to carry on as usual. 

The chest pain has happened twice. Once after my 1st chemo (a few days after treatment) and secondly after my 2nd chemo (the next day). It didn't feel like I was having a heart attack as in clutching at my chest but more like an uncomfortable ache in the centre of my chest. I also am familiar with indigestion and its definitely not that and so although I found it a little discomfiting, I went to sleep on both occasions and woke up feeling ok. 

I called the McMillan nurse the other day and they of course advised me to go to A&E. I still haven't been yet as I feel that the pain has gone now its just a waste of time.

If this happens again I will go to A&E to check things out but the thought of it stresses me out even more. I bloody hate that place!!!

Anyway, I hope you are ok. How much longer do you have left of treatment and are they looking to cure your cancer?

Hi Thehighlander

So sorry to hear you had such an awful time during your treatment. I couldn't imagine what you have been through. 

I fully except its a bit stupid of me not to go to hospital but I obviously didn't feel the need strongly enough. If the chest pain comes back I will dial 111 and make the dreaded journey. I think the main reason for me not going to hospital is because my local hospital is rubbish and I know that the experience will probably stress me out even more but I also understand that I need to take this more seriously especially after reading what you have been through. 

I'm hoping that the pain is just the chemo doing its "thing" in my body and that it's not anything more serious. I think I posted this originally to see if anyone else has had the same experience as me in the hope that the chest pain was a normal side effect of the chemo and nothing else. 

Thanks for replying and I hope you are well. 

Hi moomy

Thanks for the advice and if I get the chest pains again I will call 111. 

I hope your son/daughter is on the mend x

I'm good thanks.

I did ABVD like you and had my mid point scan around August, which was all clear. I was stage 3 and had affected nodes in loads of places. Both sides of the neck, chest, spleen and a couple of places lower down that have very hard names to remember. So luckily my body responded well.

I finished treatment in November and the PET scan was again all clear. Had my first 3 month checkup a couple of weeks ago and my doctor said I was all good to go for another 3, although he didn't scan me or anything. Just did a physical check and blood test. 

Sounds like you're doing better than me with treatment. I kept working, but from home as I was getting extremely tired the first week after chemo. Second week felt pretty normal.

Yea I hated the way it affected my taste buds as well. Nearly all drinks tasted like someone had dropped a big old block of wood in them. Normally went away after day 4 or 5 though.

All the best for your treatment journey. Lots of hurdles to get over but keep positive, your mind and body active and you'll be finished before you know it.

Hi, yes daughter is doing ok although she needed lots of treatment (her HL was obstinate, like her she says!) and she has a clinically very low immune system and is having treatment for that. (My profile tells you more, click on my user name to read) 

hugs xxx

How old are you. My son has the same. He’s just had 1 cycle.