terminalmancer Posted April 25, 2017 Share Posted April 25, 2017 Likewise. Hoping for the best for him, and for all of you. 1 Quote Link to comment Share on other sites More sharing options...
Sirithiliel Posted April 26, 2017 Author Share Posted April 26, 2017 (edited) So the diagnosis isn't good, there are three options they could go with, but none of them are a permanent fix. Meaning whatever treatment he goes with, it's not going to cure it. This is just a copy/paste from their email to me: Option #1: Surgery If the chest CT comes back clear Dr. Krimpl said he will offer to do surgery if that is the direction we wish to go. It is a major surgery. I will have my left jaw removed along with more of my tongue. The jaw bone would be replaced possibly with part of my shoulder blade. The procedure could take up to 20 hours. I would be in ICU for several days and then in the hospital for a couple of weeks. At home recovery would be several months. The success rate for this procedure with all I have already been through is less than 50%. Dr. Krimpl actually said 50% would be pushing it. He wanted us to know everything so he stated many of his patients do not opt for the surgery because they do not want to spend months dealing with the surgery and recovery when there is less than a 50% chance for success. Option #2: Clinical Trial Stephenson has a clinical trial underway that uses a combination of a drug along with laser surgery. If I qualify for the study there is no cost to us. The drug attaches to the tumor and helps the laser focus in on the tumor. The laser kills the tumor immediately. There is no long term history with this treatment. The study being done at Stephenson has had about 4 patients and so far seems to be successful short term. However, since there is no historical data they do not really refer to it as successful. If the tumor is located near a major blood vessel or artery I will not qualify for the study as the laser could cut open the vein or artery. The one downside of the procedure is it is extremely painful for about 24 hours afterward. I would be in the hospital just to treat for pain. If there were no complications and the procedure appears to be helping it can be repeated up to a total of four treatments. Option #3: Gene & Immune Therapy I can have a study done of the tissue that was remove for the biopsy and have like 300 genes identified. There would then be drugs administered based on the information found from the genes. Some drugs may help some may not. They would not know until administered. Most drugs that do work only do so for a limited time. At that point another drug would have to be tried. This would go on for the rest of my life. During the entire time I would also be given drugs to help build up my immune system. Edited April 26, 2017 by Sirithiliel Quote Link to comment Share on other sites More sharing options...
Glitterwolf Posted April 26, 2017 Share Posted April 26, 2017 That's a lot to think about. 2 Quote Link to comment Share on other sites More sharing options...
LittleBluberry Posted April 26, 2017 Share Posted April 26, 2017 That covered all of the experimental treatments I had heard about. It is a lot to think about and unfortunately there is no 'magic wand' to just make it all better. My thoughts are with you and your family, I know it's going to be a difficult time. <hugs> 2 Quote Link to comment Share on other sites More sharing options...
Grayfax Posted April 26, 2017 Share Posted April 26, 2017 That's tough, Siri. I wish you and the family well in weighing options and finding one y'all are comfortable with... and then with the procedures that follow. Our thoughts are with you all. May you still find things to smile together about when you are all together in the days ahead. 2 Quote Link to comment Share on other sites More sharing options...
Jokemeister Posted April 27, 2017 Share Posted April 27, 2017 Thanks for the update Siri. I have no advice as I have no experience with any of the options posted but regardless of what you and your family decide - I wish things work out well. <Hugs> Quote Link to comment Share on other sites More sharing options...
Thes Hunter Posted April 27, 2017 Share Posted April 27, 2017 Wishing you and yours all the best. Quote Link to comment Share on other sites More sharing options...
Pingo Posted April 27, 2017 Share Posted April 27, 2017 <Hugs> Quote Link to comment Share on other sites More sharing options...
Moderator Chaoswolf Posted April 27, 2017 Moderator Share Posted April 27, 2017 Internet hugs to you. 1 Quote Link to comment Share on other sites More sharing options...
Sirithiliel Posted April 27, 2017 Author Share Posted April 27, 2017 Thanks everyone, I do appreciate it 6 Quote Link to comment Share on other sites More sharing options...
pcktlnt Posted April 27, 2017 Share Posted April 27, 2017 Hugs Siri! Quote Link to comment Share on other sites More sharing options...
Darkmeer Posted April 27, 2017 Share Posted April 27, 2017 I... Do not know what to say Siri. Sending an internet hug your way too. Stay strong. Chin up. And make sure to take care of yourself. Quote Link to comment Share on other sites More sharing options...
canuckotter Posted April 27, 2017 Share Posted April 27, 2017 <hugs> Quote Link to comment Share on other sites More sharing options...
Sirithiliel Posted April 30, 2017 Author Share Posted April 30, 2017 Just dealing with it as best I can. Worst part is trying to comfort and reassure my mom from three states away. My step dad hasn't given up yet, and is determined to get through this like he has the previous treatments. I need Bones 3 lol. I have plenty of things to paint, but they're all the small humanoids that aren't very relaxing for me to work on. I do have a pewter dragon and phoenix from Reapercon's boneyard, i should pull those out and work on them while i wait for all my dragons and nifty monsters from Bones 3 to come in 11 Quote Link to comment Share on other sites More sharing options...
Glitterwolf Posted April 30, 2017 Share Posted April 30, 2017 We're all hoping for the best. He sounds like a real fighter, I respect that. Quote Link to comment Share on other sites More sharing options...
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