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June 24, 2013 at 10:08 am #21394
Does any body know whether you are able to have a PET Scan while on Zelboraf?
I am in Queensland, Australia – Stage IV with widespread skeletal metastasis and have been on Zelboraf since March 7 this year. My first CT scan 6 weeks after starting showed a 30% reduction in two of my tumours (skull & shoulder) however my latest CT scans shows no change to those same tumours and a notation on the report stating that accuracy as far as disease identification -new or existing could only be quantified by a new PET scan. However my oncologist will not recommend a PET Scan because he said that I will need to come off the Zelboraf for at least a couple of weeks in preparation for it.
I am concerned that this may not be true because I have read about other patients having PET scans while on this treatment without mention of coming off the treatment for any decent length of time. Can anybody shed any light on this issue?
Thanks, Belinda.June 24, 2013 at 10:51 am #61445Dick_KParticipant
Good to hear about the 30% reduction. As to your PET question, I can respond with personal experience. For about the first 18 months I was on Zelboraf, I had PET-CT scans every six weeks and since that time, I have had occasional PET-CT scans. I never had to stop taking Zelboraf because of scans. In my almost forty months on Zelboraf, I only had a short holiday while my liver function was reviewed. Hope this helps, and best of luck to you.
DickJune 24, 2013 at 2:26 pm #61446KarenJParticipant
If you have to take the contrast drug, and if your kidney or liver function isn’t up to par, then it makes sense that you would have to be off the drug for a while to let your body recover good function. Otherwise it could do a lot of damage. But my doctor told me that some of the new (yet unpublished) results indicate that stopping Zelboraf for a while seems to delay the resistance that develops with Zelboraf. So it’s not a bad thing. They may well determine that intermittent use is the best way. So I wouldn’t be concerned about letting your body take a little “vacation” from it. It clearly works with you, and might work better with a rest.June 24, 2013 at 3:27 pm #61447LoveJunkyParticipant Dick_K are you sure you had PET CT scans?
Cancer cells works on a fermentation process to create energy and therefore use a lot of sugar to grow. PET scans inject radioactive glucose and then scan to check where the body is absorbing the most sugar. As far as I know the BRAF meds stop the sugar uptake process and so they are typically not useful.June 24, 2013 at 3:49 pm #61448Dick_KParticipant
Yes, absolutely sure I had PET/CT scans. I was able to track decreasing hypermetabolic values until they no longer lit up after 9 ½ months on Zelboraf.
DickJune 24, 2013 at 4:22 pm #61449KarenJParticipant
I guess my earlier response should have been more complete and less rambly! My husband was on Zelboraf and was able to have a pet scan early on, but he had labs before his second pet scan that showed his kidney function was not good enough for him to drink the radioactive marked sugar-water that allows the tumors to show up on the pet scan (it would have been too hard on his kidneys). So he just had the MRI (he had been scheduled for both).June 24, 2013 at 11:15 pm #61450NYKarenParticipant I most definitely had a PET scan after 1 month on Zel.
Hope this helps,
KarenJune 25, 2013 at 11:03 am #61451
I am so grateful for your responses. I am also so grateful to this forum for what it offers to patients & families. Even for those like myself who are so far away.
Thank you again & best of luck to you all.
Belinda.June 27, 2013 at 12:14 pm #61452GillyParticipant
my hubby is 5 months into Zelboraf – PET scans are not given in France unless metastases are indicated by MIR scans – we suggested after his last scan (which showed that the initial shrinking had stopped and we were worried they may be about to grow again) that we have a PET scan to see if the tumours were still absorbing sugars but we were told that his kidney function indicators were not up to it. To tell the truth they were a bit evasive so I dont know if this was because Zelboraf can interfere with sugar uptake or if its because PET scans are 5 times more expensive ! All the best.June 27, 2013 at 6:22 pm #61453Linda56Participant
I live in Belgium and I’m taking Zelboraf already 44 weeks without interruption (full dose). Every two months I’m having a PET-scan and the last scan showed that I am NED. So it’s totally unnecessary to stop with the Zelboraf treatment prior to a PET-scan.
I hope this information is helpful for you.
LindaJune 27, 2013 at 11:18 pm #61454AnonymousGuest
Good for you Linda! Great news.June 27, 2013 at 11:48 pm #61455 Thanks for the latest information. It seems there is a very different approach depending on where you are receiving treatment. I appreciate (now, after reading your responses) that there might be liver or kidney issues with the PET scan but I just wish the oncologist could explain it more. I too have found some abrasiveness when I have brought it up… They did say cost is an issue but I guess when it the disease is in your life sometimes cost (as long as you can afford it) becomes a secondary consideration. I certainly don’t expect PET’s all the time but just to get an indication of whether anything else is brewing especially now that any shrinkage of my existing tumours appear to have stopped in the CT scans.
Thanks for your time.
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