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Hi guys,
I came here via Blondies post. I was only sharing my story on a german forum. There we also made contact and communicated for few months, until recently it stopped.. eventually for the reason we are afraid to hear...
I will be very brief with my story, I feel like Im over the most of it through sharing. But maybe something might be of help for one or another.
I was diagnosed in March 2015 with extragonadal EC. The main tumor was in duodenum. I went through:
3x PEB
2x TICE HDCT
semi castration
6 or 7x GOT but with Abraxane instead of Taxol due to severe reaction on Taxol. Mark that in case you know some1 who has issues with Taxol.
Large surgery - spleen removed, part of duodenum and parts of liver.
1x GOT HDCT *yes highdose gemcitabyne, evil, very evil.
then relapse March 2017.. I thought its over. Metas in the liver started to make real pain. My docs did not want to give up but they didnt know further too. They offered me Keytruda.
Thanks to Martin (Blondie) I learned about Brentuximab Vetodin. I did more research and found BV+Keytruda combo but only done on 2 experimental groups of non hodgkin lymphoma patients.
I presented it to my docs and they agreed. But we started off wirh BV only for safety reasons - it showed great success first but then suddenly few metas started growing again and I had pneumonia. One new tumor in liver went to 5.5cm within only 3 weeks and was causing extreme pains. I thought its over. Then Keytruda was added, so I got cycle 5 BV and 1st Keytruda. I think now Im on 10th BV and 5th Keytruda last week. Last week CT showed that most metas are declining and two are stable, but not growing.
So this is my story in brief. I am still alive. My awesome (new) doctors, who fight with me. Because all that therapy is not approved by insurance but they made hospital pay for it as part of special program. I am lucky. Thanks to Martin too...
I dont know whats to come, If I will ever make it or its just prolongation.. but I am thankful for every day I can live and breathe without pain.. I am still very weak and tired after all things I went through and all the regular infections and fevers.. But its still better to be alive, this life is just too great to give it up.
I was also exploring a lot about JQ1. Found lots of studies with bromodomain inhibitors and some wanted to accept me. But luckily I dont have to for now.
Thanks,
O
I came here via Blondies post. I was only sharing my story on a german forum. There we also made contact and communicated for few months, until recently it stopped.. eventually for the reason we are afraid to hear...
I will be very brief with my story, I feel like Im over the most of it through sharing. But maybe something might be of help for one or another.
I was diagnosed in March 2015 with extragonadal EC. The main tumor was in duodenum. I went through:
3x PEB
2x TICE HDCT
semi castration
6 or 7x GOT but with Abraxane instead of Taxol due to severe reaction on Taxol. Mark that in case you know some1 who has issues with Taxol.
Large surgery - spleen removed, part of duodenum and parts of liver.
1x GOT HDCT *yes highdose gemcitabyne, evil, very evil.
then relapse March 2017.. I thought its over. Metas in the liver started to make real pain. My docs did not want to give up but they didnt know further too. They offered me Keytruda.
Thanks to Martin (Blondie) I learned about Brentuximab Vetodin. I did more research and found BV+Keytruda combo but only done on 2 experimental groups of non hodgkin lymphoma patients.
I presented it to my docs and they agreed. But we started off wirh BV only for safety reasons - it showed great success first but then suddenly few metas started growing again and I had pneumonia. One new tumor in liver went to 5.5cm within only 3 weeks and was causing extreme pains. I thought its over. Then Keytruda was added, so I got cycle 5 BV and 1st Keytruda. I think now Im on 10th BV and 5th Keytruda last week. Last week CT showed that most metas are declining and two are stable, but not growing.
So this is my story in brief. I am still alive. My awesome (new) doctors, who fight with me. Because all that therapy is not approved by insurance but they made hospital pay for it as part of special program. I am lucky. Thanks to Martin too...
I dont know whats to come, If I will ever make it or its just prolongation.. but I am thankful for every day I can live and breathe without pain.. I am still very weak and tired after all things I went through and all the regular infections and fevers.. But its still better to be alive, this life is just too great to give it up.
I was also exploring a lot about JQ1. Found lots of studies with bromodomain inhibitors and some wanted to accept me. But luckily I dont have to for now.
Thanks,
O
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