Hi!
Ive read your book and posted in the past so thanks again. My partner had chest wall SS since 1 year ago and her treatment has included chaemo,surgery, radiotherapy and more chaemo all of this ended Sept 2017. She gets checked every 4 months with scans - Oct 2017, Feb 2018 - both clear! Next one due June 20th. She has been on fish oil and neuromins since October 2017.
Her SS diagnosis was bisaphic SSX1. I've done lots of research and it appears there is much confusion and most of the research seems to indicate that Bisaphic is favourable over Monosaphic but SSX1 appears to have a much worse prognosis however most Bisaphic is SSX1 which seems contradictory - do you have any thoughts on this? Also can i ask what your tumour diagnosis was - Bisaphic or Monosaphic and SSX1 or SSX2?
Also how are you doing? Well i hope!
Are you still taking the oils? How is patient DH? Do you know if he is still taking the oils after all these years?
Again thankyou for all that you've done to help everyone!
Rene's synovial sarcoma is monophasic. Pathology did not determine whether it was SSX1 or SSX2, just that there was a SYT-SSX fusion.
Rene was on high dose fish oil (as described in Chapter 15) for 3 years, during which there was no further tumor. Then she was on a lower dosage ~7g/day afterwards, gradually tapering down her omega 3 to ~2-4g/day. All this time she maintained a low omega 6 diet, aiming for 10g omega 6 or less daily.
Patient DH is still doing well. He took the high dose fish oil for 10 years after which there was no more tumor. Then he decreased his omega 3 dosage.
Details for omega 3 supplementation: http://www.curingcancerbook.com/diet/high-omega-3-supplementation
Details for omega 6 diet: http://www.curingcancerbook.com/diet/low-omega-6-diet
Thank you both a lot for your reply it really does mean a lot. My partner has now been on hogh dose omega 3 / low omega 6 for about 8 months since all the treatment ended last year and has had 2 scans now - both NED. Next one due next week. So far so good, again many thanks for all the work you've done supporting people with synovoil sarcoma!
We're very glad to hear your partner has been NED for 8 months.
We're curious -- what is the daily dosage of omega 3 (EPA + DHA)? And approximately how much omega 6 is the daily intake?
Wishing you continued NED scans!
Thankyou for your reply. The dosages have been omega 3 - 12g and omega 6 - max 10g often less. So very much hoping this will keep mets at bay. Again many thanks!
Hi again! I came across information about Photodynamic Laser Therapy for treating lung mets, i was just wondering if you have any thoughts on this treatment?
Just thought I'd let you know 3rd 4 monthly scans are clear - yaaay. Surgery completed Jully 2017, 6 rounds MAID chaemo - 4 prior to surgery, 2 after ending in September 2017,radiotherapy sandwiched inbetween, high omega 3 / low omega 6 started November 2017.
All the best!
We're very glad to hear your partner is doing well!
Wishing her continued good health!