PSA 0.08. But MRI and CT showed C3 being eaten by C3 tumour June 15th 2022. MRI good with no apparent erosion of C3 in Jan 2022. So had emergency neck surgery to support C3. Put rods and screws from skull to C7 to support C3 above and below..Cut out about half of C3 tumour ( peeled some off spinal cord). Opened up space between spinal cord and presumably a tumour that will continue to grow again at C3.
Now in recovery at home. No restriction on activity. Can walk , go up and down stars, do gardening. All this unlike surgery on T9 on Nov 2017 when had spinal compression and had to learn to walk again, and recovery to 80 to 90% activity took 6 months.
Seems an amazing surgery with my C spine now back in perfect alignment ( C3 erosion had caused C3 falling into misalignment. Just have to get used to having rods and screws in my head and limited neck movement/ mobility.
I have had about 60 Gys radiation including stereotactic radiation to C3 so lifetime radiation already done so no more RT that could damage spinal cord according to Radiation Oncologist. He gave me 2 years to live back in Nov 2017. Now he does not see why I wont be still around enjoying QOL ( quality of life) for the next 2 years!!
So what’s next treatment. I am currently on ADT and Zytiga. Do nothing? Stop Zytiga… has it failed? Get some radioligand therapy eg Lu177and/or AC225? I am PSMA very avid at C3 and T8 to T12 according to a PSMA PET scan December 2020. Should I get another PSMA PET scan.
I’m thinking I should get Lu 177 and: or Ac225 to zap the PSMA avid tumours . Maybe 2 doses of Lu177 and one of Ac 225. I am chemo naive ( and want to stay that way) which appears better for radioligand therapy. They are now doing infusions as little as 2 to 3 weeks apart in some places on Europe instead of the 6 weeks in the recently FDA US approval based on the VISION clinical trial. I cannot do a lot of the clinical trials for Lu 177 as am chemo naiive and OSA 0.08!! I live in Canada.
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nobaday
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I'm glad they were able to reconstruct you! Did they look at the tissue they removed (histology, IHC, and genomics)? You appear to have a low PSA subtype. Pluvicto and Xofigo are forms of radiation too, so they will have to calculate whether you would exceed the limit - tissue destruction can be brutal.
There is no evidence that chemo-naivety is better for radioligand therapy. You may be confusing it with progression status (of which it is an indicator). The only way you can qualify for it in North America is on a trial that does not require chemo:
Thanks TA. The PSMA PET scan in Dec 2020 lit up C3 and T8 to T12 so I think I’m a prime candidate for Lu117. My hope / expectation is 3 infusions could reduce these tumours significantly.Your suggestion of an FDG PET is to identify any another tumours including non PSMA expressing???
I realize that after Lu117 non PSMA expressing tumours could continue to grow. As long as everything is slow growing my QOL should continue for a long time…. Hopefully years not months.
Hello nobaday! Congrats on just getting through these various hells that were presented to you . Forgive me , but that is a boatload of suffering dear friend . Wow! You’re 60 I’m 61 ,what a ride? I pray for miracles for us all . Day by day for most of us . You’ve got your witts about you . I wish you healing and good days away from docs and pc too!🙏✌️
Not really too much suffering. A week before surgery where I had to lie down periodically or take Tylenol 3 to take pressure of head on C3 area. My neck and shoulders are a bit sore now and feels funny having limited neck movement and screws and rods in neck. But pain/ soreness should be 0 to 2 in next couple of weeks and pain free QOL should begin again for some more years…. Soccer, hiking and skiing back on!!
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