Hodgkin lymphoma

Hi Jodi and a warm welcome to the community. Good that your clinical team are carrying out all the checks to fund the best treatment tool fir you.

It can be very confusing in the early days so getting clear information can help…… so you may find this link

Questions to ask your medical team about Lymphoma

…..helpful as it highlights some of the important questions need answers for are various points over your journey.

If you have any questions do put them up as Simone will be able to help you out.

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.

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

They also have a Lymphoma helpline on 0808 808 5555 where you can talk with someone and get support - open every week day from 10 till 3.

Hi Suzanne..just had a read through of all the comments  and wanted to say welcome to the group you are not alone..I remember going through all this diagnosis and scans and treatment plans and everything..that happens so fast ..you hardly have time to take it all in..I myself got diagnosed in october 2023 with stage 2 classic hogdkin lymphoma and started treatment in December and currently on my 4th round of chemo.  As it goes on I feel my body is taking it well but just feeling very fatigued all the time.i mean everyone is different so you could react differently but anyway ..don't be scared of the chemo doesn't hurt at all if u have a picc line you won't feel a thing. You obviously will be anxious and nervous probably emotional  but all normal feelings. I think after your first chemo you will feel more relaxed and know what to expect after. Try not to overthink side effects sometimes you might not have any ..just take each day as it comes.keep your head high and you will get through this.

Thank you so much.

Yes I feel overwhelmed at the moment, there is only myself and my 17yr old son (who is a full time student) plus 2 dogs. 

I'm scared but I will take each day as it comes... I will know which chemo drugs I can have on Monday and treatment should start same week. 

Thank you for all the links.. I'll look through them all. J 

Hi Jodi ….. as you get your head round going into treatment you may find the link below…..

Top Tips for the day of your Chemotherapy

…… helpful as it’s a collection of top tips from folks who have been through treatment.

Thank you so much for your experience. It is nice to hear that the chemo was not too bad for a few of you but I do understand everyone's different. Everyone on here has been great. I had my first consultation with the haematology consultant and specialist nurse. I have been extremely lucky and have caught it really early so it is only in my neck. I will have chemo then radiotherapy. Because its so early they said I could wait until after a joint birthday party for 2 of my granddaughters on the 9th especially because one of them was born on my birthday. It will mean I will probably start it just before our actual birthday but I'm not too bothered about. I am just so grateful it's early stage.

Hi Mike

That link is fantastic. Thank you

Suzanne

These are some of my simple tips.

Nausea may be a challenge, but remember you must not to suffer in silence as there are lots of tools available - but your team need to know how you are getting on as at times it is trial and error to get the right one. I was only sick once during my 750+ hrs of main chemo and this was down to a bad food choice…… I just wanted some takeaway food….. believe me it’s not a good idea.

Cancer-related fatigue may well build up over time so take each day as it comes but at the same time keep some activity going as this does actually help overcome some of the fatigue..... the less you do the longer the recovery.

There is a real Risk of infection so care needs to be taken to control infection contacts. Generally it takes about 48 to 72 hours for the body to break down and/or get rid of most chemo drugs.

But the effects of the chemo on growth areas and your general immune system will last for weeks and is important to remember that you may well be more open to infections at about days 7-14 as this tends to be the window when our immune system is at its lowest……. then the body recovers in time for your next cycle….. but the more chemo you have the longer the recovery can take so by the end of treatment it could take a few months this to recover completely.

I was given this simple rule for keeping eye on infections…… If my temperature is 37.5°C, repeat in one hour. If my temperature has increased, whether I feel unwell or not, I must contact the hospital.

I would also highlight the importance of drinking lots of water (the aim is 2 litres every day) as this will flush out all the toxins released by the chemo, protects the kidneys and keeps him well hydrated.

It is VERY important to have accurate contact information/names/numbers for reporting in issues especially during out of hours and weekends.

There is no need to be a hermit….. you can go out. I would meet up with friends in a quiet corner of a burden centre….. fresher is a good healer……. The main thing is check to check that folks visiting you at home are not carrying a bug…. coughing, sneezing etc….. and open the windows abd let some fresh air in,

((hugs))

Thank you so much Mike.

Good morning- Pete here - can I please put in my twopennorth (again). I repeat the staff need to know how you are. So don't be brave and shrug off your feelings, especially feeling poorly. Certainly early on, I wish I had kept a daily diary on how the treatment was going. After a few weeks of cycles, one day can merge into the next so days/dates can get blurred and memory fades/confuses. "How are you? - how have you been?" from the staff are not throwaway phrases. As Mike (The Highlander) has said, nausea, for example, can be contained (and not in the toilet bowl all the time).

Can't over emphasise having laughs and hugs. Whoever invented cancer . . . I won't let him/her control ALL of my life.

Have an excellent weekend with plenty of laughs and hugs - have a (long distance) hug from me,

Pete X

Thank you so much Pete it is great to get so much advice from people who have or are experiencing it.

Suzanne x