Recently diagnosed

Second what Phil says! I wish I'd had a check up prior to start - first week of ABVD I was hit with toothache!

Glad the biopsy went well. Was it excisional or a core sample with a needle? I wish I had an excisional as then I would know what sub-type I had (the more tissue they can get the easier it is to spot the cells and diagnose apparently)

All the best!

Thanks  again!

I had an excisional biopsy on the left side of my neck (visually, the main site of it!) under general anaesthetic, so that's all swollen up now.. gotta wear a scarf all day into work tomorrow! Hope the swelling goes down very soon.

I went to see my dentist before I was diagnosed, actually - she found the lumps in my neck too and also offered to get me urgently referred.

It's a haem/onc I'll be seeing on the 14th, yeah - got a scan too. Nerve wracking to think about to say the least, but I'm trying to bend my mindset to "I will be getting treated no matter what" :)

Dear me, still very surreal to be writing about this

Ah, how I envy your excisional biopsy! Touching my neck lumps drives me crazy. Trying not to think about it. Hope the cough I've developed is ABVD related and not anything else HL related. I thought waiting to start treatment was bad - but now I think the "is treatment working?!" Is even worse haha. 

It is all surreal, isn't it? 3 months ago I was fitter than I'd ever been. Never imagined this. The ironic thing is I started getting fit because I was tired all the time - thought I was just being lazy!!! 

It was only a biopsy rather than removal, so they're all still there... It's just the one for analysis. They're bad because they're visually apparent I guess - I was working earlier on and, especially cos I'm all swollen up, had to wear stiff collars / scarf wherever possible. I really hate them and can't wait until they go away. Have you felt like they have reduced or anything since you started treatment?

Yes it's awful, I was also on the same fitness train except I wasn't like really tired (that only really happened in late Nov/early Dec as far as I know) I just thought I was boozing too much! 

I wish I could tell you that they will go but to be honest mine haven't yet! I have a PET next week so I'll let you know how it goes. I've read around a lot and apparently it's common for tissue to remain and that they may never go back to normal size. I just hope that's the case with me. I believe they have shrunk somewhat since I started treatment (they no longer feel like 2 huge grapes) but since that initial shrink they are still very much 'palpable'.

Things you will soon be sick of hearing:

"How do you feel?"

"Sharp scratch!"

"let me know if there is anything you need"

"you have the good cancer."

If you don't mind me asking, where are you being treated? I'm up in Newcastle!

I'm in East London!

I haven't got diagnosis yet I suppose so absolutely no idea what the state of play is currently. I have heard a few of those things already, though. For me, it all started with 1 big lump and a couple of swollen up smaller ones on top of it. Ultrasound showed that it's on the other side of my neck too but they're much much smaller (I can only feel one or two little bumps). I can't touch it atm because it has the steristrips on it, so I don't know what they removed yet. But yeah my left hand side is golfballed massively. Feels so alien... can't wait to beat it out of me.

 It seems like the last one is true(ish) judging by what people have said / what info I can find online. I'm not overloading myself with info until I'm diagnosed fully, though.

Guess I have another question: what do you do / can you do once you're in treatment? Like, not when you're going to hospital, but what do you do all day? That's the one bit I want to know about. I'll bring my xbox one home with me (I'll stay at family home during treatment), renewed my netflix account and also bought some books... but I'd guess you can only stay in because of your immune system being shot to pieces! Is that right?

Ah man it all sounds so similar to mine. Ultrasound revealed a couple more on the right side of my neck I didn't know was there either! If it's not crossed your diagphram or got on an organ you will be Stage 2. If you have only just had the biopsy though, how do you know it's Hodgkin's? (Not wanting to scare you just wondering how they diagnosed it). That said - my doctor took one look at my neck and said he suspected HL straight away - also before biopsy.

As for the hospital - typically you are just there for the day. If you can try and get your bloods taken at your local GP the day before if it's easier. They like to have recent bloods on the day of treatment - if they take them on the day it can be a few hours before you get the results and you end up being in hospital for longer.

You may be fitted with a line, port or simply a cannula depending on what your hospital prefers. I just have a cannula in my arm. ABVD is tough on the veins - and I've read many people say a port or line is easier. Once they are fitted they stay in for the duration of treatment, but require a bit of maintenance. 

In terms of stuff to do - whatever really! Handheld console, magazine, book, wifi... I usually just play on my phone or watch a film on the tablet. The drugs don't take long, but the Dacarbazine takes about 2 hours to infuse. Usually I get to the hospital about 12 noon and I'm done by 5ish depending on how fast they get bloods/waiting times etc. Just in time for evening rush hour ;)

They took 2 blood samples from both sides of my neck and looked at them under the microscope to diagnose me as having HL. It was really scary, because I didn't know back then - the doc said it was something innocuous, and the doctor in the ultrasound room said "that doesn't look like [whatever the doc said] to me... looks like glandular fever". They then took one sample from the big lump on my left side (she jiggled a needle right into it for 5 seconds and it actually hurt a fair it) to see what it was. They then called me in again saying they "didn't get enough cells" which I kinda felt was off (even though I'm no doctor). She then jabbed and jiggled into one on my right I didn't even realise was there. 

The doctor I spoke to who diagnosed me said that the medical biologist had suspected it was HL from the first look, which was why they had me in again to confirm the diagnosis.

It sounds like you've got an identical story to me, though - the doctor mentioned lymphoma when he referred me.

So you actually get a canula in your arm? Interesting.

Thanks for the insight r.e. the timeframes. What do you mean about bloods? Do I need regular blood tests?

I'll be in central London getting treated so I guess I'll need a taxi waiting :)

Ah I see! Well HL is quite tricky to detect because only a very small amount of the tumour is actually cancer (I've read anywhere between 1-10%) - the rest is inflammation. That's why needle biopsies aren't ideal as sometimes they can 'miss'. However they ARE quicker than a regular biopsy. My doc said that as he was sending me for an ultrasound they might as well grab a sample while they're there as they can do that at the same time and it will speed up the start of treatment. Unfortunately they weren't able to sub-type my HL as they didn't have enough tissue either. But the chances are it's a type called 'Nodular Sclerosing' , which is seen in 70% of cases and I believe is common in the younger folk. This type is also notorious for leaving behind scar tissue (fibrous bands of tissue) that can remain even after the HL is gone. I hope it's that because my lumps don't seem to be going anywhere fast :p

They like to keep an eye on your blood tests for a variety of reasons:

1. To keep an eye on your liver and kidney function. They're going to take a bit of a whacking - drink plenty of water during treatment and the days after.

2. To check your general blood count, but also your 'neutrophils' - which are the first line of defence against infection. The drugs are going to try stop your white blood cells from dividing (including the cancer) so naturally your immune system is going to take a hit. I think a good 'neut' level is about 3-4 upwards. If it drops below 1 (mine was at 0.63 last time) it means you are neutrophenic and are therefore more at risk from infection - a minor infection can become very serious very quickly if your counts are low. Some places may give you a growth stimulant which can bring these counts back up by boosting production of cells in your body. I hear it can be a tad painful - I haven't had it. Keeping on schedule with this treatment is important - they don't want to give the cancer chance to recover - so if you have low neuts but are otherwise fine they will just plough on with treatment.

Had my CT scan today. I'm really hoping I'll stop worrying about every little twinge I feel from here on in - it's all been captured now.

I've started blogging too (well, I started a few days ago) which has helped get everything out a bit - havinghodgkins.blogspot.co.uk. Feel free to have a read.

I have the meeting with the haematologist on Wednesday. After having the scan today, is it likely they'll be able to tell me the diagnosis and treatment plan by then?

Tom