Hello!
My name is MK Matus and I recently bought your book, read it and proceeded to: buy one for our oncologist and try and convince everyone I know to go out and buy a copy as well.
Your book is not only incredible but full of useful information and hope.
In November my boyfriend was diagnosed with metastatic Ewing's Sarcoma in his right ulna with 2 mets to the lower left lung. We are currently receiving treatment at MD Anderson under the care of Ravin Ratan
Remington is 24 years old and was treated with 6 consecutive rounds of Vincristine, Adriamyacin and ifosphamide. However, he couldn't receive the final dose of Vincristine due to the toxicity he was experiencing (eventually became unable to walk--- slowly improving). He has also received 2 rounds of irinotecan and we are unsure of our oncologists next steps.
After his most recent pet scan, he was considered NED but was unfortunately not a candidate for surgery. Instead, they opted for 17 rounds of photon radiation (42.5 greys) to his elbow over a 3 week period.
I guess the bottom line is: what do you think we should be asking our oncologist for? Do you happen to know of anything like the PD1 and the checkpoint inhibitors for Ewing's sarcomas?
Other info: his tumor did not display the typical translocation or any other translocation when they did the testing. His FISH test also came back inconclusive.
Remington also has a rare metabolic disorder called PKU (phenylketonuria) which means his body cannot use phenylalanine.
His PKU doctor and I have the opinion that the VAI chemo was so toxic to him because of the PKU.
We're so sorry Remington is having a difficult time with chemo.
We were confused by "he was considered NED but was unfortunately not a candidate for surgery", and the prescribed radiation treatment to the elbow.
1) Could you clarify his current status of tumors - the location and size of each tumor?
2) Could you clarify what treatments the oncologist is recommending to tackle the current tumors?
3) Did the oncologist say how small the elbow tumor needs to be before Remington can have a successful surgery?
The current status of his tumors: primary tumor of the right ulna originally sized at: 9 x 6.5 x 5.2 currently sized at 4.7 x 3.4 x 6. The lung nodules are "subcentimeter" and no longer show up on PET scans. He is considered "no evidence of disease" because he doesn't have any FDG avid cancer in his body but the tumor in his elbow is apparently very complex and the surgeon told us he was not a candidate for surgery because of this. We were told that he would just receive radiation and NOT have any surgery at all.
The original plan was to do: VAI chemo (6 cycles) followed by surgery followed by 8 cycles of IE chemo. Unfortunately, the toxicity Remington experienced prevented him from following his regimen and the location and complexity of his tumor prevented surgery.
We have completed: 5 cycles of VAI chemo, 1 cycle of AI chemo, 17 photon radiation treatments to the right elbow (42.5 gy) and 2 cycles of Irinotecan. There is no "plan" as far as I know. It's more of a "wait and see" kind of situation.
That is really encouraging that after chemo + radiation, his tumors shrunk and are no longer FDG positive.
Hang in there with the side effects. I also had neuropathy after 6 rounds of AIM, taking a fall when my legs gave way. Took lots of Vitamin B complex to restore the nerve damage.
You mention Remington’s tumor doesn’t have the usual translocations of Ewing’s sarcoma. It is hard to know how a cancer will behave when it does not have the usual characteristics of that cancer type - it could mean it’s less aggressive or more aggressive compared to the “usual” Ewing’s. It will require diligence on your part and the oncologist’s part to closely track any changes and take action.
What to ask the oncologist for -- You could try asking for advice on immunotherapy, but in our experience, if immunotherapy is not FDA-approved for that particular cancer, the oncologist will not recommend it. Immunotherapy hasn’t been approved for sarcomas yet. It may be more beneficial to contact the oncologists that are actively treating patients with immunotherapy -- more info below.
If you want to pursue PD1/immunotherapy now, here are some resources:
1) MDA sarcoma immunotherapy trials - please note the 2 sarcoma oncologists to consult with in the beginning of post #6 in this thread, and the current sarcoma immunotherapy trials at MDA:
http://www.curingcancerbook.com/where-can-we-get-slides-tested-ny-eso1-e...
2) Local oncologist experienced with PD1 who can prescribe PD1 off-label. Off-label cost of PD1 at MDA is much too expensive (Last time I checked, MDA marks up PD1 by 400%), so best to pursue it with a local oncologist who can give PD1 at cost price, or perhaps free with compassionate use. (Chapter 16, pg 280-281, section “Think out of the box…”)
3) Combinations of PD1 and treatments that generate T cells against the cancer may be more effective in generating a successful immune response compared to just PD1 alone.
Since Remington had radiation (which can generate T cells against the cancer) and if it clearly shrunk his elbow tumor, it may be worth it to try to get PD1 asap (see Chapter 11, starting pg 182, “Radiation: an immunotherapy accessible to all”)
4) We don’t know how responsive Ewing’s is to PD1 alone, but from our experience, it’s important to get all aspects of the immune response in place. Chapter 16 summarizes how to go about this.
5) During the time when he has no active treatments, it may be worthwhile to look into dietary changes with omega 3/omega 6 (Chapter 15).