From Dadoona:
Hi Rene / Andrew
Thanks so much for your ongoing support and guidance to SS sufferers you both are a true inspiration. I've read your book twice now and i constantly refer to it - so much to take in and my memory is lacking at times haha.
Can i ask if the need ever arises and we need to get lung mets removed but find it too difficult to get cryoablation here would cyber knife cause a similar required response? My plan would then be to source Opdivo / Keytruda.
My partner had a 6cm SS on chest wall between top 2 ribs up to clavicle ( clean margins) all too close to the lungs for my liking.
Has recently finished combo of 7 gruelling months of 4 MAID chaemotherapy cycles, raditiotherapy then surgery followed by 2 more cycles of chaemo. Due to have first scans - chest ct at the of end of October.
Many thanks!
We’re so sorry your partner had such a difficult regimen. It’s very good the margins were clean!
Cyberknife is a more focused radiation. We talk about radiation in combination with PD1 in Chapter 11, section “Radiation: an immunotherapy accessible to all”, pgs 182-184. However, we haven't heard very positive reports about the immune effect of radiation for lung tumors, so radiation is not something we would do if I had lung metastases.
On this forum, an Australian patient mentioned a doctor in New Zealand who does cryoablation. We cannot vouch for this doctor as we don’t know the doctor’s level of technical skill and experience. The success of cryoablation does depend on the experience + skill of the doctor. (Please see Reply #2 and #4 - http://www.curingcancerbook.com/metastatic-synovial-sarcoma-treatment-op...)
Another resource for cryoablation is to look on this ASPS sarcoma forum: http://www.cureasps.org/forum/viewforum.php?f=55
Wishing your partner well!
Again many thanks as always for your ongoing input & guidance this would be a lot more stressful without it.
The more i look into it the more im realising that if need arises it appears we will probably need to travel to US for cryo - i don't want to take any chances and i feel that's where most experienced Drs are.
Do you know if experienced Drs charge around the same fees in the US? I'd love to use Dr Littrup but i imagine he may be the most expensive?? Do you know what he charges and does he charge per each lung met or procedure ( if morecthan 1 met)? I suppose i have to be careful because of added costs of flights & accom plus being from Australia we will need to meet all costs.
I just heard from a caregiver who contacted Dr. Littrup -- to be considered by Dr. Littrup, one needs a doctor's referral to Dr. Littrup for cryoablation. This may be logistically hard to get.
Since it's hard to get access to Dr. Littrup, I would suggest contacting Dr. Aoun, who trained under Dr. Littrup at Karmanos Cancer Center (Detroit, Michigan). Dr. Aoun did a few of my lung cryoablations. His contact info: http://www.cureasps.org/forum/viewtopic.php?f=55&t=835
I do not know how much cryoablation costs now (my last cryo was 4 years ago at Karmanos). You can ask the patients/caregivers on the above link about current costs for Dr. Aoun.