Hi all! I finished my six sessions of DA-R-EPOCH chemo for PMBL just before Christmas, and had a PET scan last week to see if it was a success. The doctor I saw at clinic said it looked all clear, but I had a call from my CNS that evening saying the radiologist had taken a look and seen some metabolic activity within the mass. I’ll have another scan in a couple of months to see whether or not it’s something sinister.
I feel a bit like the wind has been taken out of my sails after the initial good news. It’s hard to wait for two months, not sure if my original cancer symptoms might reappear at any time. Has anyone else been in this situation? I find it hard to know how worried I ought to be - are they just being super thorough, or does metabolic activity within that mass basically mean cancer?
Hi Nins7 and welcome to this corner of the community. I am Mike and I help out around our lymphoma groups.
I had R-EPOCH (not DA - dose adjusted) between Dec 2013 and April 2014 and it was very effective. But we knew it would not do the complete job for me so it had already been planned that I go onto have an Allo (donor) Stem Cell Transplant (it turned out I had to have a second Allo SCT)
I have talked with many people who, following chemo there is ‘something’ left…… some find it’s scar tissue and nothing needs to be done but others do have activity and this is often mopped up by some radiotherapy and there is unfortunately some folks have to have further chemo.
At this point in time you are a passenger in all this and all the stress and worry in the world will make any difference to what actually happens.
I was diagnosed way back in 1999 with a rare, incurable type of NHL and I relapsed multiply times over my first 15+ years but I am now over 7 years out from my last treatment being in remission for over 6 years and doing great (you can see my story in the link below)
A month after my second Allo SCT ‘something new’ showed up on my lung so it took a few weeks to arrange but I was on the CT table getting ready for a CT guided lung biopsy (not a great experience) but they did a pre opp scan and the radiologist noted that the area had reduced since the first CT so nothing needed to be done.
The one thing that I have learned in all my years until you are actually told there is a problem that needs treatment then you live life to the full.
Happy to chat more.
Our first (natural) default setting is to turn the stress button up…… but it can be very counterproductive to do this immediately….. indeed dress and worry in itself can make us ill.
We eventually realise that we have come a long way once treatment is complete and it’s worth reflecting back on ‘how bad’ things were at the start.
Before I started my R-EPOCH I was not in a great way, it was actually rather serious….. so the relief from the effects of the treatment on my cancer was amazing and only got better as time went on, yes there were bumps on the road but worth it.
Lets look for this all to pass as a simple blip on the unwanted journey.
I don't know what support you have around you, but more so from people who have the Lymphoma ‘T’ shirt?
This group us always here for to you chat out you may want to check out the Lymphoma Action website.
Lymphoma Action is the only UK Lymphoma Specific Charity who have lots of good reliable information, videos and run regular Lymphoma Action Support Platforms for patients..... I highly recommend these groups as there is nothing better than talking with other who have walked the journey.
They also have a great Lymphoma Action Buddy Service where people can be linked up with someone who has walked the same treatment journey.
They also have a Lymphoma helpline on 0808 808 5555 where Sharon or Nic will be on hand to give you some support - open every week day from 10 till 3.
((hugs))
