Hi Everyone,
I just found out that High Dose Ifex is no longer working after 5 rounds, and my tumors are actually growing again in my right lung. This is very devastating as my first scan showed it was working well and even my sarcoma doc was surprised. However high dose Ifos is the only treatment outside of surgery I have done so I am confident there is something out there for me
So lets hear it, what should I do next? I would like to hear some success stories
Your profile says you are in Washington State. Are you being treated at the Seattle Cancer Care Alliance? I know Dr. Seth Pollack is an oncologist there and he is very involved in the sarcoma research community. You may want to get his opinion:
https://www.seattlecca.org/physicians/seth-m-pollack
There is no miracle cure. The best is still to get surgery. The NY-ESO-1 trial at NIH had some good response and some people were able to get surgery after it. The eligibility criteria are stringent though (you have to have the right HLA type and express NY-ESO-1).
Since you haven’t done Doxorubicin, you could try the new combo Olaratumab+Doxorubicin…
My sarcoma doc is apart of the seattle cancer care alliance and is involved with all the current trials, I imagine he is going to want me to try dox+ olaratumab since it looks fairly promising
Keep us posted and good luck!
I am sorry to hear that the high dose ifosfamide stopped working. I had Doxy,ifos, and mesna combo when I was first diagnosed with the primary tumor. After surgery and radiation, nodules were found in my lungs 6 months later. I have since had Gemcitabine/Docetaxel to shrink the nodules, but that didn’t work either–they grew. I had bilateral thoracotomies and had many of them removed surgically, but had some remain. I then underwent whole lung radiation (a clinical trial) for 10 treatments, and the first scan showed significant shrinkage, however, 3 months after that, 3 nodules grew (although it does not appear to be more), and I have possible spots in 2 ribs. I started Votrient in June, so I’m not sure that is working, but the dose was increased and I have scans again in March. I’m not sure if this is helpful, but that has been my journey thus far. Hoping we find something that works for good!!! Good luck to you.
I’m treated at SCCA by Dr. Pollack. I am currently on Votrient and am doing well. My body has adjusted to the side effects and I actually feel better than I have for a couple of years. So far it’s been controlling my lung mets for 6 months.
My doc had decided on the doxorubicin/olaratumab for now , which I guess has shown good results
He also has been in contact with a doctor in Seattle for one of the NY ESO -1 trials , hopefully I get some sort of miracle results and so they can resect
My daughter started Votrient recently and is getting blood work weekly. Her platelets dropped to 77, so they cut her back from 4 to 3 tabs for now. As of a few days ago, she started having a problem with her vision, which she describes as blind spots (affecting her reading, computer work and driving). Her oncologist was made aware but hasn’t made any recommendations yet. We don’t know if this might be related to the Votrient or something else. The list of side effects for Votrient doesn’t mention any vision problems. Has anyone else experienced this? Any tips for coping with nausea while adjusting to this medication? (She has been taking Ativan when she takes her pills at night, which helps, but then she’s fatigued the next day)
I found the following article which mentions impaired vision with votrient (pazopanib) but the symptoms sound much worse than your daughter’s: