Last week Wednesday I went in for my 6 month post transplant PET scan. It must be at least my 10th scan (have so lost count of how many times I’ve had to lie in that bloody tube now). Scan done, now sit and wait a week for the results (and ponder). For the past couple of weeks I’d been feeling really well – besides the recent allergy rashes & chest infection – so was quietly confident that it would be good news. But you just never know …I’ve been served curved balls before.
Then on Friday afternoon I went downhill (again). Felt like another chest infection coming on. I spent the weekend dosed up on paracetamol trying to operate as normal. Coughing like an old fagger every time I moved. Energy levels really low. If I didn’t take the paracetamol my temperature would creep up and up and I’d feel pretty horrid. What the hell was going on? Not the best of situations to be in leading up to a PET scan result. I held off visiting my GP as I thought I’d get the results first (if it was bad news it would explain everything anyway) and deal with it once I know where I was at.
Tuesday (yesterday) was clinic and results. When you arrive you book in and are given your blood cards so the phlebotomist (AKA vampire) knows what samples to take. The lady on reception mentioned the docs had just asked for an extra type called IgA. We looked at each other and I think we both thought “what does that mean, is this because somethings wrong?” First thing we did when we sat down in the waiting area was to Google ‘IgA blood sample’ and it came up with stuff to do with Immunoglobulin. Huh? Never heard of it. And there we were thinking that after 2 years we knew loads about blood.
Anyway I think Em and I must have looked a bit freaked out as one of the nurse specialists came over while we were waiting to see the consultant. She grabbed Ems shoulder and whispered in her ear “everything’s alright. He’s fine. It’s all good!” And walked off… Wow. Phew. Deep breaths. We were called in a few minutes later and the consultant confirmed the good news: the PET scan was totally “PET negative” and they were very happy with what they’d seen. Even a small area that had glowed ever-so-slightly in the previous PET scan had calmed down and was cold!!!!
Just so you know how PET scans work, I’ll give you a brief summary: After fasting for minimum 8 hours you’re injected with a mildly radioactive tracer sugar solution via IV. The sugar then distributes itself around your body over the next hour. Because of the nature of cancer cells they take up the sugar and then when you’re put through the PET/CT scan machine it gives the radiologists a 3D image of your body. Any areas that have active cancer cells “light up” and glow various colours, a bit like a thermal image. It’s clever stuff.
Back to the clinic appointment – the scan showed what looked like some inflammation on my lungs. That would tie in with the feeling of a chest infection and the temperatures. Evidently the last course of antibiotics hadn’t fixed it for good. And it turns out the extra blood test was indeed for immunoglobulin levels. It’s another name for antibodies which help your body fight bacterial and viral infections (if you want the low-down on immunoglobulin I found this information click here or here). Apparently at the last check back in November my levels were 3 and in a ‘normal’ person they should be 6. When they get the latest result they are going to apply to some panel …and if it’s approved (sounds expensive) I will go in once a month and have immunoglobulin booster injections which will help me fight bugs until my body can do it itself again.
So it’s absolutely fantastic news! We are so relieved. Another milestone. I am on another course of antibiotics now and just need to get over this chest thing. Its a bit hard to celebrate while I’m feeling poorly but hopefully it’ll be over soon and we can let our hair down (yes, I have a bit of a hairstyle now!). And moving forward I hope the immunoglobulin gear will make me a bit less prone to these chest infections and snivels.
Onwards and upwards!
Great news on the negative PET scan. Do you know if they are using the Deuville scoring system (1-5 where one means completely no uptake/negative), if so, what was your score with the slight uptake compared to now? I am in the same situation, completed chemo with a score of “2”, but deemed to be a complete metabolic response. Worried about that slight uptake seen and wonder if will reappear or disappear. Anyway, thanks for posting and continued good heath!
Hi Mahesh, they have never actually said anything about a scale and I have not heard the Deuville scoring system mentioned in clinic. But yes I am sure they use the system in their MDT meetings (they keep it pretty ‘layman’ to us patients). I will ask next time. After the previous PET the consultant did explain that PET scanning was not an exact science and that there was a certain range that’s still regarded PET negative. I guess this is what he was talking about. I hope like me your next scan is even better!