Hi Harry [@hbuck1]‍ 

Sorry to hear about your diagnosis but it seems like you are being positive about it which is great :)

I had a lengthy diagnosis process this year, from February to August before they finally said it's Hodgkin's stage 3as as I wasnt showing any symptoms but it was in my spleen badly. I was started on abvd the next week. how long it takes them to diagnose but once they did they were on it!

I've had 8 doses of ABVD. I've had my ups and downs with it but I'm finding it tolerable mostly. I was admitted a couple of times because of neutropenia so just be sure to look after yourself and watch what you eat - pregnant lady diet so they say! 

I had a pet scan after 4 doses and it showed it was working so they dropped me down to AVD. The knowledge it is working makes the bad days more bareable I must say. Do you have any sort of plan on place around treatment?

I wish you all the best and if you need any help I'll do my best to assist. I wrote some tips on another post so I'll go find that and post it below incase it's any use to you.

You've got this!

Rose

a few tips now that I'm halfway through my Hodgkin's lymphoma treatment that I could suggest.

- now might be a good time to do a big cook up of a few things you can freeze for quick and easy meals when you have no energy. On my good days now I make a big thing of soup so I know it's got loads of veggies in and a Bolognese or chilli or stew just so I've got something in small easily defrost able portions when I have zero energy on my chemo weeks.

- arrange your room so that you've got everything easily accessible. For example we moved our bed away from the wall so that we could both have a bedside table. Also because I don't disturb my partner when  i'm up and down all night whereas before I was clambering over him to get out of bed.

- make sure you've got a bag of spare clothes and toiletries along with a list of medicines ready to go incase you need to go to the hospital. I was admitted after my first chemo after a couple of days because they hadn't got my nausea under control, I had no clue I was going to be admitted so went with nothing. Having a bag ready with clean clothes and toothbrushes and a charger is now a must for me as I was admitted a couple more times after that and it takes the strain off trying to get people to bring it in for you. Plus pack a book or a game or something you know how hospitals can be.

- download a symptom tracker. This will be super useful when you first start as symptoms are different for everyone. You will never know how you will personally react to chemo so having an app to track daybby day and hour by hour will help your medical team help you. E.g my nausea was horrendous at first but when I showed them just how frequently I was feeling sick they could see it was being particularly debilitating and prescibed me stronger meds. It's also a good way of tracking symptoms that usually get worse as chemo goes on, e..g fatigue and neuropathy.

- just be entirely honest with your medical team. You  will probably find the firsT couple of sessions to be the worst as they will be tweaking your medicines depending on how you react as everyone reacts differently. Just be entirely honest with how you feel and your symptoms. There are so many ways and meds they can give you to manage these so don't suffer on in silence!

- if your tastes start to go or you feel nauseous, don't eat your favourite meals. It sounds strange but you will end up associating it with chemo and I can't even face some of the food I used to love because I ate it when I felt rotten and now it's just a nasty reminder.

Just a few things off the top of my head.

I really hope it goes well for you and good luck.

We're here anytime.

Keep in touch 

Hi Rose,

Thank you so much for your detailed reply! I really appreciate you taking the time to speak to me. I was diagnosed at an orthopaedic hospital as they originally diagnosed me with a bone tumour, so they didn't really have much info on lymphoma. They weren't able to tell me the stage or any kind of plans for treatment. I'm meeting with a haematologist either at the end of this week or beginning of next to discuss my situation and get a plan in place. I'm just quite eager to get started with it as soon as possible! The thing I'm most worried about is all the needles as I absolutely hate them. I'm sure eventually I'll get used to it though. Do you have your's through your hand or arm? Or is it through your chest? Even when they put a cannula in my arm for the PET scan I felt like I was going to faint and that was only for 5 mins or so!

Thanks again for getting back to me!

Harry :)

Hiya [@hbuck1]‍ 

Ooft a bone tumor must have been a horrible diagnosis, I feel for you. Did you have to have a bone marrow biopsy? I wouldn't wish them on my worst enemy and yet if I try and remember much about mine I can't - I sucked on that gas and air until I was practically passed out!

I'm sure you'll feel much more settled once you've got your staging and your treatment plan sorted. It's an unfortunate time to be getting all of this up and running, what with it being around Christmas, but it's better to start sooner rather than later I suppose! 

Ah if you're really struggling with the needle aspect I thoroughly recommend asking for a PICC Line. I was offered one immediately by my specialist because they had a rough time getting a vein for all my investigations and the chemo for Hodgkin's lymphoma is pretty horrible on the veins and can hurt if they don't dilute it. So for multiple reasons I would really ask for it. At the hospital I'm treated at they will install lines for those who have a phobia of needles, not just those who are hard to get a vein from, so do ask! The procedure to have one put in takes maybe 20 minutes and most of that is just the preparation and clean down. The down sides to having one is that you have a bit of tube ( well dressed) coming out of your arm and you have to wear a plastic sleeve to wash as it can't get wet. You also have to have it dressed every week. So I would weigh up the pros and cons for you personally. However all my family have said it looks so easy that they'd get one if they ever had to have chemo! No stabbing on treatment days and they can take blood too so no stabbing for blood tests.

Wishing you all the best

Rose

Yeah I had a biopsy from my pelvic bone last year, for which I never actually received the results. I'm guessing it was inconclusive and they never arranged another one. Since then I've been going to twice yearly follow ups where I had x-rays and was told everything was fine.

The PICC line does sound like a good idea. I will definitely ask about that at my appointment. Can you feel the tube going up your arm and into your chest? And once it's in can you still feel it? Sorry for all the questions but the thought of things going into my body like that really freaks me out.

I just really want to see the people who are going to talk to me in detail about my specific case. I'm eager to know what stage I have and if there are many sites of involvement etc. I'm confused because they told me it began in the bone, and I think it's only fairly recently spread into the lymph nodes in that area. They said there are a couple of nodes that are affected. But I can't seem to find any literature online that talks about this happening? I have had night sweats occasionally and a fever occasionally as well, but only a couple of times a week at most.

Harry :)

Hi [@hbuck1]‍ 

They use a local anesthesia on the picc line site, you can feel a bit of tugging and then they asked me to cough a few times when it was going in I guess maybe to distract the mind or move things around, but once the process was over I couldn't feel anything. Even today I'm chilling with it and I forget it's in half the time! So no I don't feel it in me. 

It sounds a bit strange that they said it started in the bone and then spread to lymph nodes but it's not exactly out of the realm of possibility. It'll be interesting to know if it's in your bone? That's usually a stage 4 but then if you say there's only a few lymph nodes affected then it might be stage 2 or 3 - what do I know I'm just guessing! 

They did my bone marrow biopsy because they thought it was in my bone but that came back inconclusive, thankfully I didn't need to get another one done as I had a pet scan which showed it was clear.

You'll probably find the sweats and things reduce really quickly after you start treatment. I had pelvic pain, agony it was for months, because an affected node was pressing against a nerve.  The pain stopped after my second dose of chemo, I couldn't believe it either at how quickly the symptom seemed to reduce but that's quite common apparently.

Hope all goes well

Wishing you all the best

Rose

Hiya,

Ok that sounds pretty tolerable. I'm sure I'll be fine with it, after all I have had two biopsies in the past few weeks so one more needle based procedure shouldn't be too uncomfortable! Will just try not to think about it until the time comes haha.

Yeah at the moment going by things I've read online it looks likely to either be stage 2E or stage 4. But even at stage 4 as far as I'm aware I think it's still got a good prognosis.

It's amazing to me how often biopsies come back inconclusive. You'd think these days there would be ways of taking samples that can be diagnostic without having to repeat them etc.

Yeah I've had terrible bone pain since 2017, that was the reason for actually seeing my GP in the first place and since then I've been relying on ibuprofen every night in order to get a good sleep. So I'm hoping the chemotherapy will help with that and any damage done to the bone can begin to heal. That's another thing I need to ask the specialist actually, whether I can expect my pelvic bone to return to normal after treatment.

Thanks,

Harry :)

[@hbuck1]‍  Hiya

Definitely, just don't think about it!

Yes even stage 4 is treated with the view of full remission and cure. I think sometimes rarely they incorporate radiotherapy but I believe most of it is still done by chemotherapy because the regime works so well. Being young and otherwise healthy will also stand you in great stead.

I would imagine that the bone will start healing once the cancer gets zapped out of it for sure! 

Hope the meetings with specialists go well and best wishes for the future, if you have any questions along the way just  @ me and feel free to ask and I'll do my best.

You're gonna smash this!

Best wishes

Rose

Hi Harry,

Two weeks ago my husband found a lump in his neck and the gp suggested lymphoma:( still waiting for a proper diagnosis though and the wait is agonising. Could you tell me what exactly did your lumps feel like? Soft? Hard? Grainy? Smooth? What would you compare it to? I'm going out of my mind, I really hope it's not that but I worry it might be...

Best wishes

Honey_M

Hi Honey,

What investigations have they done so far? Has he had any scans or biopsies yet?

I only had one lump in my groin area. I think the technical term is my 'inguinal' lymph nodes. It appeared overnight, I found it while showering one morning. I would say it was probably the size of a 20p coin in diameter and it was quite hard and fairly rounded in shape. I didn't really like touching it but that's what I recall it being like. The lump actually went down again after around a month, but an MRI scan I had in August is how the doctors noticed it.

Harry :)