Hello Rene,
We've spoke before, I have stage 4 widespread Mesenchymal Chondrosarcoma. I initially tired Keytruda alone without success. Then I had a mixed response with Opdivo treatment and radiation. Then I achieved over 6 months of stable disease after 2 doses of the combo of Opdivo/Yervoy. I was only able to tolerate 2 doses of the combo due to severely elevated liver enzymes, which had to be treated with prednisone. Once the liver enzymes normalized, my tumors started growing again. We tried Opdivo alone with Cryoablation and they continued to grow (beyond a point to question Pseudoprogression). This brings me to the present. We are trying to figure out a next step. We are fairly certain the combo of Opdivo/Yervoy is responsible for stabilizing my disease, but my doctor fears it is to dangerous for my liver to take Yervoy again. I hate to give up on immunotherapy, but the concern is the growth in my lungs. Have you heard of any chemo+ Opdivo successes? We looked into low dose cyclophosphamide plus Opdivo, but I think he wants something stronger for now. We are basically looking into anything and everything. My case is far beyond standard of care. Any suggestions would be much appreciated! Thank you so much for your hard work with this book and willingness to help!
Also, my scans are being evaluated for a bilateral pulmonary laser metastectomy in Germany (I live in US though). That surgery would take 8 weeks to complete if we proceed with that route. There are too many to cryo (40+).
Dear Dollkid,
I'm so sorry you've gone through so much.
That is really good that Yervoy/Opdivo was able to keep your tumors under control. But Yervoy side effects are quite severe. I am glad your doctor was able to keep the side effects under control and that you are OK now.
Some thoughts to decrease the toxicity of Yervoy:
1) is it possible to use a lower dose of Yervoy?
2) or have Yervoy injected into a tumor?
Is it possible to cryoablate one, or a few lung tumors, then do low-dose cyclophosphamide and Opdivo? This will address several aspects of the immune response (Chapter 16, Table 3, page 272). One of Yervoy's function is depleting Tregs (Chapter 16, Table 3, page 272/ Chapter 7, "How CTLA-4 inhibitors work", page 117) Low dose cyclophosphamide may be a way to replicate that aspect of Yervoy, so low-dose cyclophosphamide with Opdivo is a rational possibility since you have had stable disease with Yervoy with Opdivo.
I hope the laser lung surgery is also a possibility. We write about it in Chapter 14, "Turning attention to my lungs", starting page 231.
Don't give up hope. Even though it seems like the tumors are relentless, it is a weeding process. The more you weed, with treatments that tackle various aspects of the immune response, the higher the chance that the last weed will be pulled out. The story of John in Chapter 14 "Turning attention to my lungs", page 231 illustrates this.
Take care,
Rene