Hi there, I'm new

Hi Daffodil3 and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

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.

The fact that your treatment was not changed mid course or escalated is a positive indication that your coming scan should be good news, but if there is anything left over this can be dealt with.

Lets look for some of the HL 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

Hi Mike

Thank you so much.

I am officially in remission thankfully! 

My pet scan showed rebound thymic hyperplasia, so I need to repeat the scan in 3 months time. I am worried about this as I have not heard of this before. 

I might start a new thread if I can't see any previous discussions on the forum as I'm keen to know if this is something other patients have experienced too.

Best wishes

Daffodil3

Hi again Daffodil3 and it’s good to hear that you are officially in remission.

It’s not that unusual for ‘things’ to show up post treatment, the body goes through a lot during treatment so stuff like this can happen….. a few months after my final treatment ‘something’ showed up on my lung….. 8 years on it’s still there but has had no effect on me and stopped me getting through n with life.

Hi Mike

Thank you for the fast reply!

I've since read quite a few threads and it is reassuring to know this can happen.

Thank you

The ability to navigate the post treatment journey with as little stress as possible is important.

You may want to check out the Lymphoma Action as they run the very good Lymphoma Focused Live your Life Course that is a peer-led self-management course.

They run regular Support Platforms..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.

Thank you so much Mike!

I hope you are keeping well

Hi daffodil hope your well my name is zainab I'm 31 and recently been diagnosed with stage 2 hodgkins lymphoma in october 2023 .  My course of treatment is 4 cycles of chemo first 2 are ascallated bcopdac and last 2 are avbd ..I have started my first cycle of chemo on 5 Dec 2023 its going okay didn't have a great start bcos of sickness and currently have really.low energy  but my question is how is avbd and did u have any side effects how well did ur body take it ect obviously I know each person is different but I just want to ask how was it for you  ..would be nice to hear from you. X

Sending you all the positivity and hoping for the best for you too!

Good morning - we made it to Christmas (nearly)! Just very quick note which are never told Zainab - if you lose your hair all over your body, do not be surprised if your nose runs. The hairs in your nose go as well.

And be positive you radiate positivity - not sure what it looks like but you know it when you have it.

Have a gentle Christmas both - plenty of hugs and laughs.

Pete (giving you both a long-distance hug and to anyone else reading this)

Hi Zainab

It's nice to hear from you

From my own experience and listening/reading others, many of us found that first round of chemo (whichever regimen it is) a shock, and the low energy is common. I hope you are recovering from that first cycle, be kind to yourself and get plenty of rest and fluids.

3 of the drugs given in AVBD are part of your BEACOPDAC regime too. By the time you've had 4 cycles, you may notice your body sort of gets used to the drugs. Unfortunately, for me, it didn't make the side effects any less severe, it was more so that I knew what was coming and how to manage them as best as I could.

I had several of the typical side immediate effects you are advised on (nausea, constipation, fatigue, altered tastebuds and sore mouth were my main ones). But as you said, every patient is different and our doses are different depending on our weight/body surface area.

If there's anything in particular that worries you make sure you speak to your lymphoma nurse and consultant, they're so helpful and will address your concerns.

Take each step at a time, this is something that helped me a lot as I am a notorious worrier.

I wish you all the best! X