I'm so sorry I've just seen this. I've had 6 rounds of r-chop and the next stage is two doses of methotrexate which I need to be hospitalised for. The worst side effect for me was fatigue. I literally slept days away. I'm now waiting for the results of another scan and the anxiety is overwhelming but I'm just trying to be as positive as possible and we will deal with what's next when it comes. Hope you are well. X

Hi [@Coco1234]‍ 

Sorry you've got all of these things concerning you, and I'm even more sorry to hear that you feel you can't tell your parents for getting laughed at, that can't be a nice position at all.

I think the first thing you should do is start writing down a symptom diary, and book in a doctor's appointment for perhaps a couple of weeks time. By then the lumps will have been there two months if they haven't gone down and I think any doctor's should definitely take you seriously if you go in and tell them the nodes have been up for this long. Having a symptom diary will 1. Help your doctor understand your symptoms and 2.help you not forget to mention anything in your appointment.

At the moment it sounds like the sweats etc have been one off or something that can be explained by other reasons. However this doesn't mean you should ignore them.

Whilst it is unlikely you have lymphoma the important thing is that you get checked out. There are a lot of things it could be - when I was referred I was also checked for things like glandular fever, but these can only be ruled out by blood tests.

I know it can be concerning but your anxiety is only going to get worse until you know the cause of the problem and then you can treat the issue and your quality of life can improve.

If you feel your parents will laugh at you then maybe you need to try and sit down with them and make them understand how concerned you are about all this and that you need their support. Otherwise you could just go to the doctor's and tell them after but I don't recommend this route as parents are your support network and hopefully once you make them understand you are serious then they will back you 100%.

Finally, please don't let anyone - parents or otherwise - tell you that there is nothing to worry about because of your age. Unfortunately Hodgkin's lymphoma is prevalent in a lot of young people and many  doctors just shrug them off, I know my own doctor did at first because I was a 'fit healthy 26 year old'. Not trying to scare you, just trying to give you a confidence boost to know your concerns are entirely valid and your anxiety is entirely normal and acceptable.

I hope this helped a bit.

If you need any more help please let me know.

Additionally, the charity Be Body Brave are all about helping young people with or without lymphoma who have concerns so you might find them helpful too.

Sending best wishes and sorry for the long message I just hope you feel supported.

Rose

Hiya

Thank you sooo much for your response :) 

See logically i know all that information but i felt fobbed off when i went to the last haem appointment which is probably were tge questions come from haha even though i should know better being a nurse myself. Im hoping for something like a cyst to be honest. 

Its a good idea about the synptoms diary, i do have a list of sorts of symptoms and more recent bloods have shown an increase in platelets but low folate and low vitamin d which i thought was the exhaustion symptoms however this has not changed in the last 2 weeks even with replacements so its all just a mystery at the moment. Its been a year long battle with my health so i think im just worn out haha. 

I hope you continue to do well with treatments xx

Thank u so much. I don’t think I have glandular as I haven’t gotten EBV but u can’t doubt anything.

Hiya, my story sounds so similar to yours, although I've not been diagnose yet, am now being reffered to a head and neck specialist.. look at the lumps in my neck, even though my main symptoms, are excruciating lower left pelvic and back pain ... I'm terrified, the nodes have only came up since the pain started around 6 months ago, and now my neck is sore on both sides, I've had scans of ovaries and blood tests which have came back clear ... I'm sorry if it's already out there, but would you mind, giving me the total list of symptoms and time scale as I'm terrified I've left it too late . 

Hi sorry it wasnt letting me reply last night so I've messaged privately but for anyone else looking for information I thought I had best put a copy of my response here.

Hey sorry to hear about your pain. It really was the worst pain ever last year.
Essentially I started getting lower right back pain which radiated to the front and down my pelvis, i went to a&e as I predicted appendicitis, however they said it was a ruptured ovarian cyst and would heal on its own. I was given painkillers and told to keep an eye on it but that it should improve. I was given an ultrasound and the lady found lesions on my spleen which I then had to have an MRI for - that was the first time I was concerned but they said the results showed nothing concerning. After about 6-8 weeks It didn't improve, unfortunately it only got worse and j was reliant on painkillers 247 so my doctor wanted to do an ultrasound of my kidneys and bladder incase there was a UTI as I'd had some problems with them in the past. During the ultrasound they ended up scanning my whole abdomen, and noticed lymph nodes everywhere so this was the first point where I was referred to heamatology. It was an incidental finding as I hadn't displayed any other symptoms. After being referred to heamatology oncology even they said they didn't suspect a malignancy so I was tested for sti/hiv/glandular fever/other things. I was also given a CT scan. The CT scan showed the extent of the lymph nodes and spleen enlargement and then they started going down the investigation route for lymphoma. I subsequently had a bone marrow biopsy, pet scan and then lymph node biopsy. By the time my lymph node biopsy appointment came around my groin had swollen a little so that it was noticeable but it wasn't enlarged until then. They took the biopsy from the groin area. It was the biopsy that confirmed the type of lymphoma, Hodgkin stage 3a with spleen involvement. The pet scan showed the extent of it. Unfortunately the bone marrow biopsy did not weild results as the sample was inadequate. Between my initial pain started in February, I was diagnosed in August. It was a long hard slog to get diagnosed and taken seriously however once I was diagnosed and staged I started the chemotherapy the following week.
I would say my blood tests did highlight a problem hence my doctor wanted to scan my kidneys etc initially, but it didn't show cancer, just that my inflammation markers were through the roof.
Because my diagnosis took so long I had come to terms with the fact I had cancer long before I was confirmed and diagnosed which helped mentally.
Sorry for the long history but hope this helps. I was told my all my nurses and doctors the diagnosis process is hardly ever that long and I was unlucky.
I hope your appointment goes okay.
All the best. Rose

Hi Rose

I'm waiting for a final diagnosis for Hodgkin's Lymphoma. I'm 40 years old. I've had swollen lymph nodes in the neck and also bad ichiness since January. Already had CT and PET scans which show swelling in my chest. I'm lucky that I was referred to haematology straight after my CT scan. I had a lymph node biopsy about 10 days ago so hoping to get results next week. When I spoke to my consultant she said that they want to start treatment straight away.

I'm worried about starting chemo during the coronavirus but have no choice. Would be good to hear from you how you coped with the start of treatment and what side effects you experienced. Did you work during chemo and if so, how long? I'd like to carry on working to keep me sane, but not sure if I'll be able to. I also find it difficult to imagine self-isolating for the next 6 months! 

Thanks for your time.

Kind regards

Tanja

Hi Tanja,

Sorry for the late reply, it's been on of those weeks!

So sorry to hear about your situation however it sounds like you're reasonably prepared for your diagnosis when it comes and so looking to getting advice on the next stages is probably a good idea.

It's a horrible time to be starting any kind of treatment with the virus, I do feel for you. I need more investigation but the virus is playing havoc with everything too!

I don't know what chemo you'll be put onto but I was on ABVD. I found it tough but I did get through it.

I've posted advice for others starting out on chemo on another board so I'll post that here-

- 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.

As for side effects of chemo, I started off with unfortunately a lot of bowel issues due to the Bleomycin but that stopped once the Bleomycin was taken out after my PET scan showed I was reacting well to the chemo. That was a blessing, permanent diahrea can be pretty tough although I've heard that's unusual and more people suffer with constipation -, lovely I know!

Managed to get on top of my nausea very quickly - as I said above just say if the medication they're giving you isn't helping because thete are some great antisickness meds they can switch and try you on.

As chemo progressed I developed anemia which is very common, and this is what knocked the stuffing out of me the most because it, along with the cumulative effect of chemo, made me really tired and dizzy and have horrible heart palpitations. Luckily they can treat this with blood transfusions but they don't like to give too many as there are risks involved. But they helped a lot! 

Your body gets through it, it's tough but you will manage it. I know it feels impossible now . If you ever need to rant im here.

Wishing you all the best

Rose

Hi Rose

Thanks so much for all the information. It sounds pretty tough and I'm dreading the fact that I may have to be admitted to hospital at the current time.

Just a quick question to help me focus on the future. How are you feeling now? Do you still have side effects? How long will it take after finishing chemo to feel "normal" again?

Also, did you suffer with hair loss and how did you manage this?

Thanks again

Tanja

Hiya Tanja,

So my only symptom really of lymphoma was pain, aside from a couple of large nodes that cropped up in the end, and the pain literally went within two weeks of starting chemo, it was mad. I was not expecting it to go so quickly considering how debilitating and dosed up on painkillers I had been for the last 6 months. Apparently it's quite common and I've spoken to others on here with pain that dissapears really soon after starting chemo so that's a plus!

3 months on from chemo I feel good but definitely not at my previous level by any means. Being in bed for most of 6 months has made me super unfit so I'm in the process of rehabing and getting fitter - easier said than done when walks are my go to fitness builder and I'm currently isolated for 12 weeks! 

I didn't work during chemo, for me personally there's no way I could have and I didn't want the added stress really but everyone is completely different. I couldn't work in an open plan office because it's so easy to catch bugs but in the end I'm glad I didn't work because I wouldn't have kept up.

I'm looking forward to going back on a part time basis from home next month though.

The side effects of chemo mostly cleared up after about 4 weeks with regards nausea, headaches etc. I had my last blood transfusion for anemia about 4 weeks after treatment and that helped loads and I haven't really had symptoms of anemia since. 

I'm still in blood thinners for the pic line caused clott I had - but don't let that put you off getting a pic line especially if you're on ABVD I truly cannot recommend it enough. 

I lost my hair in part, I noticed it start coming out after the first couple of weeks quite badly so I cut it short and donated what I had, and then buzzed it about a month after that because it kept falling out, however it never made me fully bald I always had some growth there unlike others. I buzzed it just to keep it uniform with the bald patches through treatment but I stopped January and it's about 2.5 inches long already in some spots! I think when handling the hair situation everyone does it differently. I wore a lot of hats but I also just embraced the bald and wore nothing sometimes when I went out. I didn't get the urge to hide it but I entirely understand that others will want to.

I've noticed a few issues symptomes  need to bring up with my consultant and possibly be re-evaluated which is concerning especially at this time but I'm staying positive as remission rates from Hodgkin's lymphoma treatment are really good so in hoping I'm one of the many!

All the best

Rose