HL diagnosis

Hi GrahamLq and a warm welcome to this corner of the Community although I am sorry to hear about your daughter. I am Mike and I help out around our various Lymphoma groups.

I don’t have Hodgkin's Lymphoma (HL) but I was diagnosed way back in 1999 with a rare, incurable but treatable type of Non Hodgkins 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.

As much as this all sounds so challenging and scary HL is very treatable with great results. Over my years I have talked with many family members who have had family the same age as your daughter go through treatment…… and I am pleased to say that they are getting on with life years in and their youth was an advantage when going through treatment.

I also had very strong chemotherapy. 10 years ago this week I was in hospital for my first of 6 cycles that lasted 6 days/5 nights on my 2 IV pumps 24/7 for over 120 hrs and honestly I did ok with it all with none of the side effects that I read in all the information.

Staging in Lymphoma is rather different and unlike most other cancers like Kidney, Lung, Breast….. where a high stage number like stage 4 is a poor prognosis, in Lymphoma it’s not. I was stage 4a back in 2013 and it made no difference to my outcomes.

Staging in Lymphomas identifies

1) Where the Lymphoma is presenting in the body (it can be anywhere)

2) What is the best treatment approach and best treatment type for your presentation

3) How long your treatment needs to be.

What we find is that teens deal with the treatment journey rather well mainly down to their lack of stories of people who had went through treatment and found it hard…… this is not necessarily the real story with all the new drugs that are used.

As you and especially your daughter gets ready for treatment you may find this link helpful Top Tips for the day of your Chemotherapy as it is a collection of times from the Lymphoma Action Support Platforms. they actually run a few groups specifically for family supporting someone going through treatment..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

You don’t need to be strong….. you just need to be who you have always been….. just be there to support and encourage.

Hapoy to chat more and answer questions as best as I can.

Thank you so much for your reply, especially on Christmas Day. It’s been a very different Christmas for us this year but at least we are all together.

My daughter is mainly worried about losing her hair but she is also suffering with pain under her arm (lymph nodes where the initial lumps were found). 
she is also very tired but I am guessing this could also be down to the mental and emotional impact of her diagnosis.

its very comforting to hear the positive notes from your post and I thank you for taking the time to reply.

I remember back to getting support over Christmas 10 years back so I feel it a privilege to help out these years on.

Yes unfortunately Hair loss will happen but it is temporary…., but the most important thing to remember is that her hair will grow back…… but if the treatment is doing this to her hair what is it doing to her cancer permanently.

There will be pain where her enlarged lymph nodes are located but this will reduce once treatment started,

By the time I went for my first chemo it looked like I had swallowed a brick!! It was something out of a Tom and Jerry film. My jaw had seized, my gums had swollen and we're coming up to cover my teeth. I was having great difficulty eating and was living on a liquid diet and my breathing was starting to be restricted. I had an initial blast of chemo and that got me through our family Christmas…… I even had some dinner.

Cancer-related fatigue well build up over time and it can be due to many factors like stress, lack of eating, pain…… but this will improve once the treatment does it’s job and she gets out the other side.

My thoughts are with you and your daughter. I was diagnosed 2019 on New Year’s Eve- stage lll bulky mass (wrapped around the top of my heart) and not responsive as they hoped for to the chemo. But this is what I know- there are so many treatment options these days. The doctors didn’t know how to treat my very difficult case, but they kept trying, and here I am today, 4 years later perfectly healthy. It was a winding road, but with God’s help, they got me to a good place. I pray for peace for you, your family, and especially your daughter.

Sincerely,

KH Pope

Thank you so much for your help amd support, words cannot cover my gratitude.

Thank you so much and congratulations on your fantastic success story.

Good morning GrahamLq …… we are out at our daughters who stay just above Loch Ness so we opened the curtains to everything white again….. so yes we had a white Christmas.

What hospital/city will she be having her treatment?……. this may help connect you with others in that area.

Hi Mike, we live in Chester but will be traveling to Alder Hey in Liverpool for all treatment.

A white Christmas sounds magical l, hope you all had a lovely day.

Graham

Sorry to hear about your daughter's diagnosis. I had HL two years ago and life is pretty much back to normal now, but the treatment is a really hard slog. Macmillan is great, but I found a specialist charity helpful too. Lymphoma Action provides online and network support and you'll find people who've had/ are having the same treatment which is helpful. They also have young people’s networks and a great Facebook page where you can ask anything. Do remember that while a tough treatment t HL is a very treatable condition and there's a long history of getting people through to remission and back to normal life. Best wishes.

Hi Graham

Welcome to this group though I am sorry you are here. Highlander is right about staging in lymphoma. I was straight away diagnosed at stage 4a in 2014 and I’m still here. I won’t say it’s been an easy journey but I’m in my sixties, teenager’s are much more resilient and treatment is more advanced and less brutal each year.
I know it’s easy for me to say but try and make the best of the holiday. Good luck xx