My new oncologist booked me a PET CT scan at the end of June and the other day I went to find out the results. The period between scan and results always makes me anxious; “Am I getting better or am I getting worse”.
The results this time were a tad perplexing, the radiologist described them as “complex” and my oncologist described them as “mixed”. Previous experience with the results of PET CT scans have shown me that they are anything but accurate, an MRI scan would be better but I can’t have one as I have a pacemaker. Things on previous scans have come and gone, got bigger and smaller and generally confused me, this set of results is no better.
Essentially “several sites have increased in size and FDG uptake”, “new left upper bowel metastasis” and “some sites have decreased in FDG activity”, this is compared to my scan in December 2017.
A PET CT scan involves being injected with what is essentially radioactive glucose (FDG) and you are left for an hour so this can whizz round your body and be “taken up” by things in your body. it is measured by SUV (Standardized uptake value) which is normally illustrated on the image as different colours with blue being low, through green, yellow to orange. SUV is given a numerical value but its pretty difficult to find any table which will tell you what the numbers mean. The higher the number the bigger the uptake of FDG and this is interpreted as higher activity of the “site”.
I posted up a previous image of my scan results after treatment at The Hallwang Clinic, here it is again so you can see what I mean about the colours:
Tumours take up FDG and i did find an article that said anything above 2.5 SUV is an indication of malignancy. But FDG can be taken up by infection, inflammation and other things as well as tumours which is why the reports are so vague. My previous oncologist said that activity on the scan could be caused by the immunotherapy drugs making my immune system attack the cancer sites making them inflamed and thus them showing as higher activity on the scan. Other people have told me that it is likely that tumours get bigger whilst they are being attacked as well.
So I do not have a very clear idea of where I am. I still have metastasised cancer, it looks like it is starting to get worse again but some areas are starting to clear up. What is going on?
I’ve asked for a CD with the images on so I can take a view on whether this is good or bad, but I won’t really know until my next scan which is scheduled for December. When I asked about my next scan I ran into the usual problem of patients that are deemed terminally ill; they don’t want to spend any money on me! But I insisted, the oncologist said she would insist and a letter has arrived with an appointment. It is ironic that I was offered chemotherapy (when everyone knows it will be of no use) but a scan is apparently not a routine thing. I don’t want chemotherapy so maybe they could put the money towards the scan?
I don’t really know if anything I’m doing is actually helping me and won’t until December (or January) when I may actually be in a much worse state. Maybe the Cannabis oil is helping? I don’t know. What I do know is that there is treatment out there that could help me but I’m not going to get it anytime soon from the NHS or anyone else in the UK. My latest find is REGN2810 (or Cemiplimab) which is currently in Phase 2 clinical trials on specifically my form of cancer because phase 1 had a 42% success rate. Here’s some more information on REGN2810. I printed off all the stuff I found on it (10 minutes on google) and gave it to my oncologist as she had never heard of it. That’s the second time I have had to explain to or inform an oncologist about immunotherapy drugs, does the NHS not do continued professional development?
Unfortunately I am never eligible for these trials because I have already had immunotherapy, they want fresh meat.
It looks like REGN2810 is gong to be used for quite a number of cancers but typically all the work is being is being done in the US, what does Cancer Research UK actually do with the millions of pounds it raises from the public each year? The trial is being carried out the U.S., Australia and a couple of sites in Germany. REGN2810 was given FDA Breakthrough Therapy Designation for cutaneous squamous cell carcinoma is September 2017 but there are no plans to make it available in the UK. The NHS is aware of REGN2018 but as this document from the NHS Specialist Pharmacy Sevice (no, I’d never heard of them either) states it is in the NICE time table but “When” is “unconfirmed”. How it can be in a timetable when the timings for consideration are “unconfirmed” is something only the NHS bureaucrats can explain.
Another NHS document from the National Institute of Health Research (no, never heard of them either) actually states the following:
For advanced cSCC there is no standard of care and no licenced treatment available. Available guidelines suggest chemotherapy and EGFR inhibitors may be used in this population.
I’d agree with the no standard of care bit.
It then continues on to say “The incidence of NMCS is under reported in the UK due to inconsistent data collection” – WHAT?!? If that’s the case how did the IFR screening group come up with their reason for refusing to fund my treatment because I’m “in a group of similar patients” etc (see previous post).
Also, despite it stating “The cost of cemiplimab is not yet known” it goes on to state “Increased drug treatment costs (potential increase depending on comparator)” despite the fact that there is no licenced treatment as they have already stated. I suppose technically it will be an increase as at the moment they don’t bother doing anything.
Finally, they are lining up to refuse it by stating “Clinical uncertainty or other research question identified: The clinical evidence to support cemiplimab will come from a single arm Phase 2 registrational study. There will therefore be uncertainty regarding the comparative effectiveness of cemiplimab. Overall survival data is also likely to be immature at the point of HTA submission.” Comparative with what? As the paper has already stated there is no licenced treatment, chemotherapy can be used but it has NEVER been successful on cutaneous squamous cell carcinoma. Survival data will be poor because the NHS under report the incidence of metastatic cutaneous squamous cell carcinoma; if they don’t bother to record how many people get it annually they can’t know how many people survive or for how long.
Anyone reading this as a UK taxpayer, you are paying for people to write this garbage! This is where the NHS funding goes, it isn’t underfunded it is just full of over funded quangos producing rubbish like this.
Maybe people might think I’m unfairly ranting about the NHS, but until you find yourself in the position where treatment is available that would probaly save your life but the bureaucrats won’t let you have it and refuse to explain why, you won’t understand the level of frustration and stress I feel.
I always try to finish my posts with something positive but I’m struggling this time. I have to accept that my cancer is still rampaging and so it is likely I will die in the next year or so. What I am doing might prolong my life but only if it is as active on the cancer as the cancer is on my body. So I’ll keep fighting but I’ll also put my affairs in order, if I can stay alive long enough for the treatments that are already available to become available on the NHS then all well and good but it looks more and more unlikely I’m afraid.