Hodgkin lymphoma

Hi again Jamburger and a warm welcome to this corner of the Community.

Although I am called Thehighlander do call me Mike. I help out around our various Lymphoma groups. As I said in your post in the New to Community I don’t have Hodgkin's 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.

As you were only diagnosed last Thursday what have you actually been told about the way forward?

Lets look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.

Always around to help more or just to chat.

I am having a PET scan Wednesday and my first team meeting on 22nd to discuss results and next steps. I do know I will be having chemo but that's bout it.

I forgot to say my name is Suzanne.

Thanks for this Suzanne…… so you are in the ‘rabbit caught in headlight stage’

Lymphoma is the 5th most common type of cancer in the UK (after breast, lung, colon and prostate cancers)…. there are lots of treatment options available and unlike most other cancers Lymphoma is very treatable with great results.

The PET scan is an important tool to check where your HL is presenting but regardless of where it is it is treatable.

The PET will give you your staging.

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.

Jamburger said:

I do know I will be having chemo

Yes chemo is the main go to treatment…. It tends to full on…… I had a treatment called R-EPOCH for my type of Lymphoma back in late 2013/2014 and honestly I did well during it all and this was with me having 6 cycles that had me in hospital 6 nights/5 days on my 2 IV pumps 24/7 for over 120hrs each treatment.

You may want to have a look at this link Questions to ask your medical team about Lymphoma as it will help you ask the right questions once you meet up with a consultant - clear accurate information helps turn the noise down between the ears.

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 Hodgkins 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.

Always around to chat and answer questions.

Thank you so much. This is so helpful.

Hi! 

My name is Michela! I also have Hodgkin lymphoma. I've just done my first cycle of chemo (2 sessions). 

If you want to talk or if there is anything I can help you with I will be happy to answer. You are not alone ️

Thank you Michela. It really hasn't sunk in yet so I honestly don't really know what questions to ask but someone sent a link with lymphoma questions so I'm going read that before my first team meeting. I go for my PET scan tomorrow so I think it will be more real then. At the moment I'm too busy focusing on what I can do to get ready in case chemo is really bad so then my husband can focus on looking after me. Unfortunately suffers from anxiety and palpation but will admit he is dealing better than I thought he would luckily we have  good support from our families. It feels really good knowing that I have someone to talk to who has already started their journey. I am sure I will have questions eventually for you ️

Hi five. Just came back from hospital. After first cycle of ABVD finished. Me feeling great bit shaky because of the steroids. At the beginning been scared. Because of my nature I didn't knew much about. And find some good Chanel on YT It is called 'ninja nerd' he having two episodes about Hodgkin's and, none Hodgkin's lymphoma. And other stuff but It's kind of deep dive into subjects. Academic level. For people like me who needs to know and understand. It is also good brain exercise. For those forced relax days. Do you think will be ok to leave a link here for this channel?

Hello all, I'm Pete and last week finished 35 cycles of immunotherapy (took 2 years) after having 2 different lots of chemo again over 2 years (was eventually diagnosed in September 2019). So I will share some experiences and thoughts with you. Importantly and firstly everybody is different and their reactions to and from cancer/treatment is unique.

Get used to waiting for tests and results thereof. Waiting must happen is certain circumstances- it can take weeks for your body to settle down after treatment before testing (e.g. PET scans).

Yes all of your hair can fall out - think of the money you save on hairdressers/shaving etc. What they don't tell you is all of your hair can go and that includes your nasal hairs. So don't be surprised if your nose dribbles. But you are then a member of the BBC (Baldy Buggers Club).

Get plenty of laughs and hugs - can't beat them.

Tons of websites out there - ignore them except Lymphoma Action and NHS, Cancer UK sites. You haven't got the knowledge to sift through them so use these reliable ones. Lymphoma Action runs many webinars and support groups - these keep you grounded + laughs.

Panic when you have to. Sadly my late wife "taught" me this maxim - she had a brain tumour - diagnosed/treated in 1992, lost her 90% of her sight in 1997 but still (latterly part-time) worked until she was 65. The tumour caught up with her in 2009. A hard lesson but it has served me well. And we shared (and I still do) everything with family and close friends.

Get used to the new norm.

The NHS staff are on your side - if they ask you how it is going - tell 'em. Remember they haven't got ESP - they want to know because your treatment may be altered appropiately. One of the most important person(s) on the ward is the Clinal Nurse Specialist(s). They have tons of knowledge and experience - to you, you are one of one but to the CNS you are one of scores they have known. The CNS is the intermediary between the consultant and treatment ward/regime. Speak to them - they have a direct line to the consultant and are accessible - I bet your consultant isn't. Lovely people.

All the best and hugs

Pete X

Thank you for sharing. I am sorry to hear about your wife. As someone who only got diagnosed Thursday reading this is very helpful. I go for my first scan tomorrow. I am going to shave my hair off before it falls out and donating it to the little princess trust so at least one good thing comes out of it. My daughter and son are going bald as well to keep them company. Am so grateful for my family support.