HL stage 3S PET scan result

Hi AandE) and a warm welcome to this little corner of the Community but sorry to hear about your mum.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have Hodgkin's Lymphoma but  I have been on my Lymphoma journey for over 25.5 years first diagnosed way back in 1999 at 44…… with my rare (8 in a million) incurable but treatable type of slow growing Skin T-Cell Non Hodgkin’s Lymphoma (Skin (Cutaneous) T-Cell Lymphoma)

I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) very type of aggressive Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.

From what you have said your mum’s clinical team are not immediately changing treatment…. So they are still looking for the present treatment to do its job.

These treatments are accumulative so the effects of the remaining treatment on the remaining growth areas will be more concentrated…… I was the same during my main chemo.

If there is still some activity showing in her post treatment scan ( this can often happen) they can mop this up using radiotherapy or some other drugs…… time will tell.

My main chemo was never going to get me into 100% remission so my plan was always to follow up with an Allograft (Donor) Stem Cell Transplant (SCT)……. I actually had 2 SCTs but this was due to the complications of being treated for 2 rare, very different types of lymphoma but I am now over 10 years out from my last treatment, I turned 70 back in November and I am living a great life - this can be done.

Lets look for the remaining treatment to do its job - always around to chat. 

Hi OrangeCat. I had similar - after two rounds of ABVD my chest hadn’t reacted all that much (neck completely disappeared though) - I think it had shrunk by about 50% and so I was moved to 4 rounds of escBEACOPDac. I don’t think they tend to move you to that if you’re over 60 because of the toll it takes on the heart though.

I completed 2 rounds of that and my next PET looked like I’d JUST reached remission. But then after the next two rounds it looked like it had potentially returned. My PET scan gave me a score of X…which sort of means they don’t know what it is. I had to wait another two months to see what it did without treatment and at that next scan it had gone down again.

Mike The Highlander is right though. Keep with the treatment and radiotherapy is a definite very good route (and I gather it’s not the worst treatment when in the chest). 

[Side story from me: I don’t want to give false hope but it turned out I had Thymic Rebound (not uncommon after chemo in middle aged people, looks a lot like lymphoma in the chest but it’s completely harmless). VERY lucky me…]

Thank you both for sharing your stories. Our biggest worry has been why is this treatment not working in one area. Will anything work in that area. It’s such a long waiting game and we’re worried we aren’t doing enough - should we be getting second opinions? Should we be pushing for more? 

We heard radiotherapy is quite risky in that area as it’s so close to the heart too so that is also panicking us 

Unfortunately one treatment does not fit all circumstances and as each lymphoma presentation is rather different it can take a few approaches to do the job…… it certainly was in my case…….

I had a total of 45 sessions of radiotherapy…… some were in some very delicate areas but these treatments are very accurate.

Reflecting back in the 5 zaps I had on the tennis ball surface tumour above my right eye that had attached on to my eye lid closing my eye.

I was told it was 50/50 that my right eye could be damaged but I did the 'Man in the Lead Mask" thing, had 5 sessions of Radiotherapy and bang it was gone in 5 weeks leaving a little indentation on my forehead and no trouble with my eye.

Completely understand the feelings and each wait is horrendous. I did get a second opinion when it didn’t seem to be working (and was extremely lucky to talk to one of the top guys in the country)…but he basically said to me, ‘the protocols we have for Hodgkins have been tried again and again and you need to stick with the plan.’

It’s one of the few cancers where there are a number of different treatments that can work and I suppose you have to go along for the ride and go with what the doctors are saying. It sounds like you’re definitely doing enough - I used to say the same thing to my wife but she always said, ‘So long as you turn up for the treatment, you’re doing everything you can.’ 

Thinking of you guys.