HL diagnosis

Thank you for your message and I am so pleased you are back to normal. My daughter has been told treatment will be 4-6 months depending on the results from the PET scan, does this meet with your experience?

Her chemo is daily for 5 days, then day 8 and 15 followed by 2 weeks break before it repeats. Does this sound similar to you?

if you don’t mind me asking, how quickly did you lose your hair and how poorly did the treatment make you feel?

My daughter will also be having steroids which have some not great side effects also.

Hi Graham ,

really sorry to hear the news about your daughter but HL is very curative . I was diagnosed in 2019 stage 4 and had chemo - ABVD , etc .. these names will become very familiar soon .. my hair came out after treatment 2 ( which I am sure you and you daughter are dreading ) . I never shaved my head as some people don’t loose their hair ( I did ) but I got two lovely wigs and tried to make the best of it .. xx

just take each treatment day at a time and just make it a “job” . I was always fine for a few days , then tired , then fine again .. but everyone is different . I never felt sick ( although took anti sickness tablets ) , never lost my eyebrows or eyelashes either .

i could go in and on but short story is I got the all clear 2020 and have been fine ever since . It is horrid and I am sure for you as her Dad it must feel terrible but she can do this and with your support and love it will soon be a distant memory.

i was treated  at The Christie in Manchester.. so if you think anything isn’t going to plan in Chester definitely contact them .

hope you manage to enjoy Christmas Day/ Boxing Day ..

we are all praying and wishing your daughter the best .. good luck .. 

lisa x

Thank you Lisa amd congratulations on your all clear.  My daughter will be treated at Alder Hey in Liverpool given she is 16. The hair loss is going to be very difficult as her hair is everything to her.

I am both dreading it starting but also know it’s a path we must walk to recovery.

Good morning Graham GrahamLq and I do hope that you and your family have had some peace in the midst of the storm.

I am glad that some of the group members have picked up on your post and I hope you can all draw some encouragement from their replies.

I mentioned this before and I see that Room with a View has also highlighted the amazing resource that Lymphoma Action can be. 

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.

As I highlighted they have some great Support Platforms but as your daughter is under 18 she cant access these but you certainly can.... I highly recommend these groups as there is nothing better than your daughters family talking with others who have walked the journey.

They also have a great Lymphoma Action Buddy Service where 'you' can be linked up with someone who has walked the same support 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...... but your daughter can get some great direct support through the Teenage Cancer Trust

You may also find this link Practicalities for young people with lymphoma helpful and also the much more detailed Young person’s guide to lymphoma (Hard Copies of books are available free from Lymphome Action - just call the support line) 

As a way of some encouragement you may want to listen to this link Kicking on - Robbie Fergusson.

I also volunteer for Lymphoma Action. Back in Aug 2021 I did a Lymphoma Voices Interview with Robbie Fergusson who was diagnosed with Hodgkin's Lymphoma back in 2013 at the age of 20. Robbie goes on to talk about his diagnosis, treatment, recovery and eventually getting back to playing professional Rugby Union, playing for the Scotland 7s International Team and representing Team GB in the Rugby 7s Team at the Tokyo 2020 Olympics.

I can totally understand how the whole subject of hair loss can be for a 16 year old but many look to turn their challenges into a positive and support The Little Princess Trust by donating their hair to be made into wigs that support others going through their treatment.

Always around to chat and to answer questions as best as we can.

Hi, responses differ depending on treatment type and the person but this was my experience.

After biopsies I started with a massive course of steroids to relieve the mass and quite enjoyed that bit - still miss them! Chemo started as soon as staging done.

I had 6 cycles of ABVD- one infusion every two weeks for 6 months (a cycle is two infusions). They did a PET scan after fourth (?) to check it was working.

They were really clear with me to expect hair loss ofter second infusion and that's exactly what happened. I had it shaved off as it's really unpleasant as it comes out in clumps and helps you feel in control. It started growing back before treatment finished.

They adjusted the ABVD to AVD quite soon which I think is normal to avoid damaging lungs then further reduced to AD as I was developing peripheral neuropathy. 

In terms of side effects, I found it really gruelling. Luckily my employers was fine, but that won't affect your daughter. I just took the time off and stopped everything to concentrate on treatment., but others have said they were able to work through. 

My main side effects changed during each two week period but became quite predictable: sleeplessness just after for two nights (steroids), restless leg, hicoughs, taste was all over the place, fatigue and increasingly peripheral neuropathy (which I still have two years on but is reducing slowly). I only felt sick once as I took the anti sickness pills and prune juice kept everything in order.

Best of luck with it and hopefully you'll be able to look back in a year or so to a horrible experience disappearing into the past.

Hi Grahamlq

Just read your post really sorry to hear about your daughter as she's so young but god willing she will get through this.i  am 31 and a mum to 3 little ones and i myself got diagnosed with stage 2 classic hodgkins lymphoma in october 2023 and have like yourself been told about 4 -6months treatment time. I had my first round of chemo on December 5 and currently waiting to be called in for round 2. I have been been told I will have 2 rounds of escalated bcop dac and 2 rounds of abvd . Chemo round 1 has been okay not too bad there were a few days that were a struggle as in low energy staying in bed literally the whole day  but overall has been okay. Sickness has been on and off but I just find it easier to take the anti sickness as soon as I wake up so u know ur covered. Aches and pain here and there but towards the end of I was feeling alot better and like my usual self. I mean u will get told about everything so you're aware of all side effects ect but just take each day as it comes  and as long you are there for your daughter to support her that will be the best thing.i feel support is really important as myself I wanted to talk to someone  whilst I had a  few of the side effects to double  check are these normal  and common. Try to keep positive and carry on as normal ..as for hair loss  mine did come out quicker than I expected  I was told by the end of the second cycle I will loose all my hair but actually after my first round a week later it was coming out and currently I only have a few fine hairs left ..which I mean is extremely hard but if u talk about it you Kind of mentally prepare yourself but it does come out in clumps and alot ... for myself  if I didn't see the hair I've been fine I know it's come out and it's not on my head but I'd rather not see it which would make me more upset..so my husband has been combing it daily and getting rid of it which I feel is better.i did get a wig which has been really good makes a bit difference to how you feel but it's just about when u want to wear it .I really hope you get through this the nurses at the hospital are fantastic as well as the doctors. Don't be scared or frightened by all the names and side effects..just reassure her everything will be fine. Hope you find this useful .x zainab

Thank you for sharing your journey. Everything I read tells of a struggle but with a positive outcome overall. 
Do you mind me asking what Stage you were classified as?

Most importantly, congratulations on your success x

Hello how is your daughter getting on? She must be halfway through treatment? Sending my best wishes her way. 
My son of 10 years old at the time was diagnosed with stage 3 HL last April 2023. He had 5 months of chemotherapy- coped fairly well, the team gave lots of medication to combat the horrible side effects. October 2023 he got to ring the bell - the best feeling ever. 
Wishing you all the best xx