In July 2012 we were confronted with the news that the 2 small metastasis spots identified and removed in one lung in Nov 2011 had developed in to a huge number (dozens/100's?) of tumors in both lungs; including some large tumors which were causing pain and breathing difficulties. My oncologist was not confident due to the speed in which the cancer was spreading and the limited treatment options available; he advised that it was now a terminal condition and to enjoy the time that we had.
I had successfully completed a course of chemo in July 2011 (Ifos & Doxi) and although the Oncologist was not confident and concerned about side effects we decided to try a couple of cycles of high dose Ifosfamide to see if that would stall progression and knock the metastases back. Although it was tough going we had immediate and positive results showing the tumors being obliterated.
We extended the treatment and I managed to get through 5 cycles.The latest imaging shows the tumors nearly all gone or at least not visible; obviously we and the oncologist are delighted by the result.
There has been a lot of literature and chat questioning the effectiveness of Ifosfamide; personally I have found it very effective. maybe I am am in the 20% of case which it is effective, but maybe so are you. It also highlighted to me that there is always hope and to keep exploring treatment options.
I feel like I have dodge a bullet again, and this has probably been the 2nd or 3rd time during my synovial sarcoma treatment that working with our medical team they have saved my life and got things back to an equilibrium again. Maybe if we keep dodging bullets we will get through this completely and eradicate the disease.
Summer has just started down under and I'm looking forward to a long, hot and wonderful time with whanau (extended family) and friends.
Hi Lynda, thanks! Im in New Zealand so access to clinical trials is a bit more difficult. Next option seems to be votriant. Our health is public funded and currently votriant is not an approved drug but apparently the drug rep has approved my case on compassionate grounds.
I'm very happy for your awesome results, and hope the good news keeps on coming. On a side note I just got FDA approval to take Palifosfamide. This is basically the active metabolite within IFOS, and will hopefully give me some of the same results you are having.
Alas the hiatus has been relatively short and latest scan result just before Christmas showed spots in both lungs on the move again. I have been awarded Votrient/ Pazopanib on compassionate grounds by GlaxoSmithKline which is pretty cool; it is not publicly funded yet in New Zealand. I still need to jump through some hoops before I get access to drugs but will hopefully have them some after new year. Health wise and mentally still feeling great but realise that if we don't do something quickly it wont stay this way for long. Still I think this Ifosfamide treatment was very effective, it allowed me to dodge a bullet and I probably wouldn't have been here at Christmas without it; it has also given us time to set up another treatment option.
Great news Gary. Jaclyn started the Votrient a month ago. She is now on high blood pressure meds because that was the first side effect she had, now she is working at adjusting when is the best time to take it to ward of nausia. Otherwise she is doing good. I hope it all goes well for you. Good luck!! Stay tough!!