Diagnosed

Hi  welcome to the Community. Just dropping in past from the NHL group to say Hi and welcome.

I am sure that some of the HL folks will be along to give you their first hand experiences...... my treatment journey was rather different from the treatment you will be getting but although it’s tough it’s all do-able.

You may find the information from Lymphoma Action good to have a look at.

lymphoma-action.org.uk/.../hodgkin-lymphoma

Hi,

I was diagnosed July 2019 ( in remission now ) I started with ABVD every 2 weeks , was scared at first but the nurses were brilliant.infusion takes about 4 hours altogether so take drinks , snacks , something to read , ear phones and wear comfortable clothes . I felt great for a few days then would feel tired and achy but then fine ..

my hair started to come out after 2/3 treatments so I cut it short then just let it do it’s own thing .. I got a wig before I lost my hair and I loved it .. I wasn’t keen on myself with scarfes but think that’s a personal thing . I never lost my eyebrows or eyelashes but did get some false ones just in case ! Some people don’t loose their hair so just see what happens.. don’t be too hasty !!

I had 6 treatments and it got rid of 97% ( I was stage 4 ) so went on to have other treatments then eventually Brentuximab which got me in Remission.. Hurrah !! 
I may gone on to have Stem Cell but not sure yet .

My advice .. just tick each treatment off , try not to look to far ahead and when you want to cry .. that’s ok too .. I cried loads .. and I’m not a crier !!.. 

I joined a group on Facebook, there are loads of information on there too ..might be worth a look .

you will be fine and you will get through this .. I did , I’m now better than I’ve felt in ages with a head full of curly hair !!!

Good luck

lisa x

Hi, I am 36 with 2 kids and was diagnosed with stage 2 in feb 21. I have just completed my first cycle and still have my hair. 

Treatment is 3 to 4 hours. I take a book, music and netflix. Also some sweets and small amount of snacks which keeps me going.

After treatment I cant sleep the first night, feel tired for a day or 2 then a bit achy afterwards. 

If you would like anymore in or just a chat let me know. You can direct message.

All the best. The time will fly by

K

Hi everyone,

I don’t pop in here as often as I should, but would like to give a few ideas (our daughter had an unusually resistant HL but is ok now) 

drink plenty of water as that helps flush through dying cancer cells and surplus chemo drugs.

if the anti-nausea meds don’t help LOTS then let your team know as there are a number of drugs to try.

if they give you steroids as part of treatment and you need to take tablets for a few days after, take them early as they really mess with your sleep!

keep a notebook/journal and take it with you each time, as little changes that the staff make when they know how you’ve been, can help loads.

if you notice arm discomfort with any of the drugs (think it’s the ‘V’ but have forgotten, sorry!) then let them know, they can slow the drug and add more fluids to help.

if your veins are rubbish and they advise a line (usually known as a PICC) it really can help, needs care but can shorten the treatment time each 2weeks. 

Take care of yourself, accept help if it’s offered, remember you are a valuable person who just happens to have a blood cancer at present! 

Hugs xxx

Hey, 

Just come across your post and I've recently been diagnosed with the same at 27 years old! Had my first treatment yesterday and so far don't feel to bad - Happy for you to message me x