Hi guys. My male 28 yo partner has metastatic alveolar rhabdomyosarcoma, we have been reading your book and found it so inspirational. It uplifts me when I read it and fills me with hope. However when we asked our doctor about it at our last consultation he was quite negative,as they are about any alternative treatment. He said that it is now a known fact that a proportion of synovial sarcoma patients cancer 'resolves itself', and that immunotherapy for sarcomas, particularly rhabdomyosarcoma is proving to be disappointing. We are still going to persue it as despite what the doctor says we believe it is his only option for any sort of long term survival, and I was wondering if you have any advice for us. We have limited funds so need to choose wisely. At this point we are aiming to go to the oasis of hope and have whatever they recommend, we are currently waiting to hear back from them. The primary tumour was in the parameningeal region, behind the sinus, pushing on the eye. Surgery was not possible. He also had neck lymphnode involvement and around 8 other bone tumours. He has finished 9 cycles of IVADO chemo and 36 fractions of radio to the head neck and spine, and now just has one pelvis bone tumour showing activity on the scans. He has had no previous radio to the pelvis and we plan to get radiotherapy on that area in the next few weeks and then get to Mexico as soon as possible afterwards in order for the treatments to work together. Thanks for sharing your story with us, it has given us a drive that we really needed. Any info or advice would be greatly appreciated. I must say that although our doctor was quite negative he did say he will support us no matter what we do which was a great relief, he also suggested a second opinion in this country first and has reffered us to another good sarcoma team but we know this could take many weeks and the wait feels scary! I also asked him about NY-ESO-1 and he showed me a study where 2 world leading sarcoma centres tested all kinds of sarcoma patients for it, out of the 9 alveolar rhabdo patients they tested 0 of them had it. 9 patients doesn't seem enough to prove that alveolar rhabdo definitely doesn't express NY-ESO-1 but we also don't want to spend our money on gene sequencing if it will be a waste of money.
Sorry for the lengthy message, I do hope it all makes sense.
Thanks again.
I should also mention that we are based in the UK
1) We *do not* recommend going to Oasis of Hope, as there is access to powerful modern immunotherapies in the UK (and US) now. If we were in your shoes, we would save that money to do cryoablation/ PD1/ clinical trials in the UK, or to go to the US for cryoablation/ clinical trials. We have more confidence in the immunotherapy treatments in the UK and US compared to treatments in Mexico. (We were at Issels before, which was housed inside the Oasis of Hope hospital, so we are familiar with the treatments they administer there).
The only reason we went to Mexico was to start Coley's Toxins, during a time when there was no access to modern immunotherapy in the US (Chapter 8). But with the modern immunotherapies available now, we would go for other treatments instead of going to Mexico (Chapter 16, section "What I would do if my cancer returns", pg 281-282).
2) Re-read Chapter 16 for our thoughts on how to get immunotherapy.
3) Find doctors in the UK who can 1) administer PD1 - they need to have experience, 2) cryoablate (this treatment is ideal for killing bone tumors and for it’s immune effect, beginning of Chapter 11)
4) Contact the Cancer Research Institute clinical trial finder - we’re not sure if they keep track of immunotherapy trials in the UK, but it’s worth asking (https://app.emergingmed.com/cri/home)
5) NY-ESO-1 testing: If you find an immunotherapy clinical trial that targets NY-ESO-1, the doctors running the trial will test the tumor for NY-ESO-1. You should not need to spend money to test the tumor before applying for the trial. (A side note: NY-ESO-1 positive tumor is not tested by DNA sequencing, but by staining the tumor slide for expression of NY-ESO-1.)
6) Another marker that may be in sarcomas is GD2. This is something else to look for when examining immunotherapy clinical trials.
7) After he finishes all his conventional treatment, while planning for the next steps and with no surgeries or procedures in the near future, the omega 3/6 regimen could be something to consider (Chapter 15). You will need to check that he doesn’t have any health issues/medications that have negative interactions with omega 3.
I personally stop all omega 3 supplementation 2 weeks before I get any scan, in case tumor is detected and I need to go for a procedure (high omega 3 can cause platelets to be less sticky, and becomes a bleeding risk).
Thanks a lot for your speedy reply.
We are now swaying towards pd-1 treatments but I have a few more queries you might be able to help us with. I read this article which suggests this type of treatment is promising for alveolar rhabdo, but to me would suggest he needs pd-l1 rather than pd-1.
http://www.mdedge.com/oncologypractice/article/130983/sarcoma-gist/pd-1-...
If you do give that a read I'd be very keen to know your thoughts.
People I read about that get pd-1 seem to just carry on taking it for many months until it no longer works, would you suggest a shorter period of time and then wait and see if he has any new mets/regrowth after he stops?
An alternative clinic in London have offered us 'anticancer medication , ACNO1 , ACNO2, ACNO3 , which can increase NK cells activity and kill cancer cell 85% in vitro , prevent from tumor metastasis and recurrence', what would your thoughts on this be?
The Mexican clinics have said themselves that before they introduced the dendritic cell vaccine into the protocol they didn't get positive results with sarcoma patients, but claim that's increased since they've started doing that. They were also recommending a low dose of chemo. There are clinical trials in the US that would take him but we'd need to be already being treated at a US hospital to get on those.
Have you heard of RIGVIR? I've heard a couple of people saying they have had good success with it with sarcomas.
If you know of any immunotherapy contacts in London, doctors or individuals we'd be greatful to hear as it is proving tricky to find them.
Thanks again.
Checkpoint blockade, PDL1 or PD1:
First, I’d like to clear up any confusion there is between the protein that is found on the tumor (expression of PDL1, or expression of PD1) and the treatment that targets that protein (anti-PDL1, PDL1 antibodies or anti-PD1, PD1 antibodies). The treatment is sometimes referred in it’s short form as PDL1 or PD1.
For more clarity on the relationship between PD1 and PDL1 and how the PD1 antibody and PDL1 antibody treatment works, please read Chapter 7, white box “How PD-1 inhibitors work”, paperback pg 118-119.
Mexican clinics: Our thoughts on the treatments are in reply #2 of this thread.
Other treatments (ACNO1, ACNO2, ACNO3, RIGVIR): We have not heard of these treatments, so cannot comment on them.
Immunotherapy contacts from patients we’re in touch with:
PD1 - Prof Justin Stebbing from Imperial College of London
Cryoablation - Read post “Cryo in Germany” in this thread: http://www.curingcancerbook.com/coleys-toxin-and-il-2