Recently diagnosed, 28 year old gal :)

Hi leaslousylymphoma and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups. 

I don’t have Hodgkin lymphoma but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

We have had a good number of folks your age come through the group so let’s see if they are still using the site.

You may want to check out the Lymphoma Action website. Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run regular Support Platforms both for patients..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey as they have a specific group covering your age group.

They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.

Always around to chat.

Hi Lea, my fiancé has just started his 4th cycle of escalated BEACOPP today and you are the first person we have heard of having the same treatment! 

He started with ABVD in November and moved on to escalated BEACOPP in March, he is finding the side affects of this one much worse than ABVD so his mood is very low but good news is this treatment seems to be working and he has been given the all clear (has to finish the treatment though) 

Fingers crossed you will have the same outcome! Keep your mind active, don’t Google and don’t overdo it!

Lots of love xx

Hi, I think we are kinda in the same boat. I'm 28 too and was told today that I have Classic Hodgkin Lymphoma although at the moment it seems to be just in my lung (although I have another PET scan in a week or so to confirm before treatment) At the moment the are planning to do the ABVD  treatment so not quite the same chemo route but the idea of it is still scary! 

Hello Crochetgirl49 (and MrsWebstertobe), Pete here - diagnosed with Hodgkin's Lymphoma (to use Billy Connolly's joke- I wish Hogdkin would take it back- don't we all) In September 2019. I have had ABVD + couple of other ongoing treatments. But still here - slightly(?) older at 78 but who is counting. The thing with cancer is the bloody word- I feel we are almost conditioned to think the worse. But the success rate for treatment is high especially if you are young!!!

So what have I learnt over the past nearly 4 years.

1. So your hair falls out - you automatically become a member of the BBC - Baldy Buggers Club - means you can save a fortune on barbers/hairdressers and shaving- ooh my legs were smooth. But what they don't tell you is ALL your hair can (not everybody's does) fall out including your nasal hairs. Which means your nose can continuously leak so buy a load of tissues.

2. Wherever you are treated (and I have been in Oxfordshire and now in Kent) the staff are on your side. If a nurse asks you how you are, and you feel crap- tell 'em. They need to know as the treatment might need to be modified. You should by now or very soon, be introduced to a Nurse Specialist(s) (titles can differ) based at your treatment centre. They are brilliant- act as a liaison between you, your treatment staff, and importantly your consultant. They are there to support you and your family if needs be. When in doubt, give them a shout (but quietly). They have a wealth of information and experience. They have seen your symptoms and trteatments in dozens of people whereas we are new to it  - one of one - and half the time unable to really comprehend what is happening and put it into context. And let us not forget the Pimple on the Bum Syndrome (PBS). Any little thing that happens we get worried. The Specialist Nurses can put the PBS into perspective.

3. Lymphoma Action is a brilliant charity- I'm sure by now you have Googled them. And MrsWebstertobe is right- don't Google until your heart's discontent. Look hard enough and some idiot could convince you your left leg will drop off. Mine hasn't (yet?). But LA has a vast range of quality information, Zoom support meetings, buddy support service etc. If there is a Maggies drop in centre near you- use them  - lovely people- I went to one if Oxford but none in Kent.

4 Finally- DO NOT FORGET THE HUGS AND LARFS. Everything can look gloomy but it ain't. Imagine living in USA and the threat of Trump.

So long distance hugs for all

Pete X

Thanks for your reply. 

I decided not long after they said it was Lymphoma in my lung that I was going to give it a name so I've called it Derek since it sounds like someone who'd try and stop you having fun (no offence to any Derek's out there!) And Its worked because now my friends and family refer to how we are going to get rid of Derek and also means you can swear at it and blame it for things!,

Lymphoma Action has definitely helped, I read some of the leaflets they have about Lymphoma and living with it which were very handy. 

Good morning. Calling your cancer Derek is a brilliant idea. Plus he can cop it for anything (Brexit?).

Short may he continue.

Pete X.

Hi! Im also a 28F and have stage 2A unfavourable HL. Im on ABVD chemo and will complete my first round on Wednesday. Hope you’re doing ok! 

Leanne x 

Hi Leanne,

Hope the first round went OK. How are you feeling after it all?

Also hope you don't mind me asking, but how long after your staging diagnosis did you start chemo? I was told the diagnosis of HL 2 weeks ago and in the meantime have done more tests (pet scan and lung function) alongside egg preservation and should hopefully get told the staging next week in my Haemotolgy appointment and they said I'd start once all the fertility bits and tests are done but I'm not sure how soon that could be. 

Helen 

I feel ok, very mild side effects so far and have been able to live my life normally thankfully. I know this could change so I’m trying not to get my hopes up but all good up until now. I completed my first cycle today (2 rounds of ABVD, just another 10 to go!) Hope you get off to a good start too! 

I already have a 2 year old so decided not to do any fertility preservation so went straight in to chemo. I was diagnosed officially and had started chemo within 2 weeks. My consultant did say I had time to do fertility preservation but I can’t remember whether he said how long the process would take.