Hello Rene and Eddy,
Once again a massive thank you for documenting your journey, we have found it extremely informative and helpful. We are at a crossroad in trying to determine which path to take for my husbands treatment and are hoping you may be able to answer some of our questions - or suggest any other alternatives. In summary Lukes diagnosis so far;
1. 20/12/16 - diagnosed with Synovial Sarcoma to left foot, requiring below knee amputation. At that time no other evidence of tumors present.
2. 11/1/17 & 31/1/17 (Prior to amputation) 2 x rounds of Chemotherapy. Combination of doxorubicin and Ifosomide infused over 3 days each time. During treatment it appeared the tumor progressed. The Chemotherapy was tough to undergo and caused bleeding whilst urinating.
3. 9/3/17 – Amputation
4. 8/5/17 – CT Scan – possible metastatic tumors to right lung (Only 1 detected, 3-4mm)
5. 19/6/17 – CT Scan – possible metastatic tumors to right lung (only 1 detected, 3-4mm)
6. 28/6/17 – Thoracic surgeon removed 2x tumors (pathology results confirmed metastatic synovial sarcoma)
7. 13/9/17 – CT Scan – possible metastatic tumors to right and left lung (6 detected at 3-4mm)
In May of 17, we underwent a body detox and commenced a ketogenic diet - removed bad Omegas, and started taking some supplements, including fish oil, vitamin c and TransferFactor Plus (a supplement derived from cows colustrum and other to increase NK cells by up to 400%). During this time energy has increased, weight loss and general well being has improved.
The present the plan of attack is to wait 6 weeks and review/re/scan on the 25th October. If tumors still appear at this scan time, the current recommendation from our oncologist is recommend a different regime of chemotherapy via a Sarcoma trial being run in Australia. This involves involves infusion of a drug called Olaratumab combined with Gemcitabine/Docetaxel chemotherapy. only 50% of participants receive Olaratumab, the other 50% placebo.
We have discussed the option of PD1 - Opdivo with our oncologist. He does not recommend this at this time, preferring the trial option.
We are concerned about the trial as the original chemotherapy cocktail was really difficult to endure. Additionally there is only a 50% chance of obtaining Olratumab and thirdly, we we worry that it will further deplete Lukes immune system. If so would it be better to try the PD1 first? and resort to the chemo as a last resort?
Other questions we are hoping you may be able to assist us with are;
1. If you did suggest PD-1, would you recommend cryoblation simultaneously?
2. Is targeted radiotherapy as good? (I am not having any luck in sourcing cryoblation in Australia - is there another way you could suggest to source this here?)
3. I have read that for PD1 to be effective, you must have a good T-Cell count? If that is true - what blood work do we request so we can measure that before proceeding?
3. We are also considering attending an integrative cancer clinic called Verita Life in either Germany or Thailand https://veritalife.com/cancer-treatments/ have you ever heard of them? They do Dendritic cell vaccines, along with a number of other therapies however I worry if they are a genuine provider of these services :( Would you recommend this, and or is there somewhere you would recommend?
Rene and Eddy, I am sorry to trouble you with these questions. I am not in any medical or research field so forgive me if the terminology I have used, or the questions I have raised are too broad. As you know, it is invaluable to have another opinion and after searching and speaking to 3 professors here in Australia (who confer with one another) we are just wanting to ensure we have exhausted all possibilities.
thanking you in advance for your time.
Rebecca
Hello Rebecca,
This is Ray from Sydney. I don't think there is any cryoablation in Australia.
I believed the closest is:-
Dr Brendan Buckley BSc MB BCh BAO MRCS FRCR FRANZCR EBIR
Interventional Radiology Associates
drbuckley@interventionalradiology.co.nz
www.interventionalradiology.co.nz
Best wishes to your husband,
Ray
thanks so much for that information Ray - I greatly appreciate it. Best wishes to you too.
We're here to share knowledge in achieving a common goal Rebecca.
I have managed to retrieve Dr Brendan Buckley comments as follows:-
“I’m not 100% sure but I think Dr Glenn Schlaohoff at Liverpool Hospital has done some cryoablation. He is an excellent Interventional Radiologist and would be worth contacting.
We do a small number of procedures for lung metastases using both Microwave ablation and Cryoablation, as some are also treated with radiation (SABRE - stereotactic ablative radiotherapy) and surgery. The recurrence rate for cryoablation overall is slightly higher than surgery, but is very dependent on the location and size of the lesion, so I tend to individualise risk of recurrence rather than quote a generic rate. A small (<25mm) lesion near the peripheral is very unlikely to recur compared to a larger (>35mm) lesion near the mediastinum. I think this is better for patients than quoting statistics that may not be relevant for their specific lesion.”
Hi Rebecca we are in Australia too - in WA. My partner had a synovial sarcoma on chest wall in April - between top 2 ribs. Chaemo then radio followed by operation with tumour removed and now just finished final 2 rounds chaemo - 6 all up. Chest scan due next month.
Like you im trying to plan ahead. No mets as yet however as you'd know at very high risk. I'm also trying to find out if anyones doing cryoablation in Australia but looks unlikely. Possibly closest may be the Dr that Ray suggested in NZ - have you been in contact with him yet?
What im not sure about is if lung mets are gotten rid of with the cryo should you then just stick to high dose high omega 3 low omega6? Or do you start PD 1 as well?? If you do PD 1 with mets gone im thinking no way of knowing if PD 1 is doing anything?? Be interesting to see what Rene and Andrew think.
Other problem is how can we source Opdivo / Keytruda in Australia if not approved for SS? And will oncologisys give the ok?
Which state are you in?
We’re so sorry it’s been such an arduous journey and the new met in the groin. Take it one step at a time.
We read all your questions and I wrote a long response. But we didn’t want the important points to be lost, so these are the main things we want to convey.
1) The strongest treatment to generate T cells against the cancer is adoptive T cell therapy. NY-ESO-1 is a common and strong tumor antigen in synovial sarcoma, and a target for adoptive T cells. I searched on the US clinicaltrials.gov site, but could not find a Australian NY-ESO-1 T cell trial. See if there are sites to search for Australian clinical trials. Search for “NY-ESO-1”, then see if there are any adoptive T cell trials.
2) Our next choice would be to do cryoablation or radiation, followed by PD1. These are established therapies obtainable from conventional hospitals. Science behind them is solid.
3) An overseas clinic such as Verta clinic, would be a last resort. Why? 1) While NK and dendritic have proven immune activity, the degree of tumor shrinkage has been minimal in decades of trials. 2) NK and dendritic procedures require highly technical/scientific expertise. We personally would be very cautious/selective.
4) When my tumors were growing, I increased my omega 3/ omega 6 ratio as high as I could to 2.4 (24g total EPA+DHA and 10g omega 6 daily). The final lung lesion I had disappeared after that, and no new tumors have grown since then (4 yrs ago). That could be a simple thing to do if there are no surgeries or procedures with bleeding risk.
This is an example of an NY-ESO-1 adoptive T cell clinical trial (in China): https://clinicaltrials.gov/ct2/show/NCT02457650?term=ny-eso-1&rank=17
A synovial sarcoma patient went on this trial and has just finished treatment. Their thread on this forum: http://www.curingcancerbook.com/synovial-sarcoma-questions-regarding-col...
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!
Hi Dadoona,
We’re moving your questions to a separate thread so it’s easier for us to find our conversation with you.
Please see our response to your questions here: http://www.curingcancerbook.com/synovial-sarcoma-chest-wall-australia#co...
Rene and Eddy
Another resource for cryoablation is to look on this ASPS sarcoma forum. Olga is a very informed caregiver and may have leads on cryoablation doctors in or near Australia: http://www.cureasps.org/forum/viewforum.php?f=55