100 day scan results – Nothing else matters

100 day scan results – Nothing else matters

I went in for a PET scan last week Tuesday as I’m at the 100 day mark post my auto stem cell transplant. I spent the next week in nervous apprehension of the results, and what the doctors would have decided to do moving forward. As I saw it there were 3 possible outcomes:

  1. “PET scan shows you still have active disease and we need to give you more chemo to get you back into remission and then send you for an allogeneic stem cell transplant ASAP”
  2. “PET scan shows no active disease. You are in remission. However we have no faith it will remain that way for long due to the way you have relapsed after very short periods of time twice in the past. Therefore we recommend that you have the allogeneic transplant and have booked you in for early January”
  3. “PET scan shows no active disease. You are in remission. We have had in-depth discussions internally here as well as speaking to other specialists in the UK and after much deliberation have decided to take the ‘watch and wait’ approach”

I am relieved and overjoyed to say it turned out to be Option no. 3!!!

I was fairly confident that the PET scan would come back clear. I have been feeling pretty strong lately and have had absolutely none of the horrible Hodgkin’s symptoms. I just couldn’t call which way the doctors decision would go between options 2 and 3. At one stage it was a dead certain they would send me down the allograft route. Then it wasn’t. Then it was again.

The doctor explained in detail how they had come to this decision. Firstly they were very happy with the PET scan results. There is absolutely no sign of disease …and as we are now 100 days out from any treatment, that is quite a breakthrough in itself.  Secondly the risks of having an allogeneic transplant are significant: my risk score came back as  a 3 (out of a possible 5, with 5 being the worst). The score is calculated from about a hundred factors, including health and lifestyle history, blood tests, heart and lung function tests, my age, family history of disease, etc etc etc. A huge factor in the score was my lung function test which showed the lungs (on the day of the test) were operating at 59% efficiency (ouch!). This was partly due to the fact I had a stinking cold/cough that day, but mainly due to the cumulative effect of a year and a half of pumping chemo drugs into me …some of which are not exactly kind to the lungs (Mr Bleomycin). On top of that last New Year I had a bout of PCP pneumonia which almost killed me and didn’t help (apparently it can leave scarred tissue on the lining of the lungs). The third and final factor is they believe if the worst happened and I did relapse in the coming months/years that there are still treatment options available which I haven’t used up yet which will hopefully get me back into remission in order to then go down the allogeneic transplant route.

So ‘watch and wait’ it is! Obviously the best outcome possible out of the 3 and we are overjoyed. I have a clinic appointment booked for 6 weeks time and another PET scan in 3 months. I’ve even been told I can stop taking the 2 prophylactic meds I’ve been on for the past year …which feels really weird! (what, no drugs at all?) . I’m told my lungs can recover with plenty of aerobic exercise and a clean healthy lifestyle, so its swimming, cycling and exercise from here on out.

Having had a few days to digest the news, I still find myself feeling stressed and short-tempered from time to time. Strangely, this hasn’t transformed me into a zen-like cool calm and collected creature. But I guess you’ve also got to put into the pot the weeks leading up to Christmas is a really stressful and busy time of year. I have to keep reminding myself that nothing else matters!


Lisa mcloughlin

Whaaaaay!!!!!! So pleased Clive. keep looking up and keep appreciating the stuff that matters! ?


This is excellent news and the best Christmas present for you and your family!!! Thank you again for sharing your journey; it has been envaluable for fellow patients and inspirational beyond words!

Did you have a Deveulle score assigned (eg 1 of 5 or the PET showed no dx / CR)?

Best wishes.


Hi Mahesh, no score was mentioned …the doc said it was a bit of an inexact science as some normal cells also glow slightly with the tracer, but he said anything they saw was below the level they would consider ‘active disease’. The plan is to re-scan in 3 months and compare the 2. Anyway I hope you have a great Christmas and that 2017 is a good year for you!


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