49yo - Just diagnosed with Stage 3 DLBCL

Having radiotherapy is like being put into a microwave ‘but on steroids’ as the resting time is rather long as the treatment continues to work for months.

I had 10 blasts of Total Lymphoid Irradiation (TLI) as part of my conditioning (taking my immune system down) for my first Stem Cell Transplant and the effects on my immune system was still working 16 months later when I went into my second Stem Cell Transplant.

Hi Paul

Just wanted to check in and see how you’re doing? 

Hope all is good? I had my post treatment PET scan yesterday and got an appointment with my consultant on Monday….the waiting is tough!

Be great to hear how you are.

Take care,

Sarah x

Hi Sarah,

Would you believe I'm still waiting for a call (they should be doing it today) as I've gone through 3 locum consultants and my appts keep getting cancelled.

The results (as far as I know so far) are pretty good, with a single anomaly that doesn't warrant any additional treatment at the moment, but they will scan me again in February.

My hair and beard are back, and I'm concentrating on having a good Christmas with all the kids back home from Australia, NZ etc. and I've got Santa's little helper keeping me occupied :-)

Hope your call goes well, 

Take care,

Paul x

Sounds like good news Paul

Hi Paul

Sounds really positive, I’m so happy for you. Great news. Thanks for the update.

Beautiful pooch….already for Xmas! Love it.

Take care,

Sarah x

Hi All,

So I have finally been assigned a (non-locum) consultant, who spent some time explaining the anomaly - which essentially is that the sites of the lymphomas are showing slightly more activity than the surrounding tissue, but as they don't have a pre-treatment PET scan (I went from actual diagnosis to chemo in <10 days), they have no pre-treatment scan to compare against. 

I now have another PET booked for the 17th of January, and a follow-up on the 2nd Feb with the consultant. 

His overall view was that I have responded very well to the treatment, and this is just a "wait and see" approach at the moment. 

Fingers-crossed that I don't need more Chemo, but if I do I'll just breath through it as I did before (there's still 100's of old films I need to watch from the sofa!)

Anyway - I felt very reassured, and I'm going to have a great Christmas with the family, including the step-kids and my grandson who have travelled home from Australia and New Zealand.

Have a great Xmas everyone, and a happy and prosperous new year.

Paul

Paul this is an encouraging positive update.

So it’s all about parking this on a high shelf and turn your focus on enjoying this Christmas period with your family.

Hi,

Great news that you’ve responded well.  Fingers crossed for your next appointment.

I have my PET scan booked for 10th January.  Currently enjoying living in ignorance of the situation and even had my hair dyed this week!

Merry Christmas to all.

Best wishes for a healthy 2022 and beyond!

Yes, my hair's grown back too! 

I don't want to have to go through the baby fluff stage again

Hi Paul and everyone else 

That’s really positive news, you can relax and enjoy Christmas.  Hope you’re feeling good in yourself.

My news is that I saw the consultant last Monday and I’m in complete remission. I was shocked and surprised as I wasn’t expecting to be told that!

Bloods in Feb to see what’s going on. I know it can return at anytime but I am trying to just get on with life.  I still get a throbbing sensation from time to time where one of the tumours was in my jaw but I’m told that can happen due to scar tissue.

Anyway, I hope everyone has a lovely Christmas and here’s to 2022, let’s hope it’s a healthy one for all of us. 

Love from Sarah xx