New Scan Results at 29 months post first surgery 2014
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Dear Julie, I am so sorry to read the result s but you definitely have the priorities right. Love and hugs coming your way. I really hate CC. Catherine
Everyone, thank you for your love and encouragement. I’m still in the process of absorbing the latest scan results and dealing with them emotionally. Tomorrow, Monday, I begin doing what i must to get a handle on what happens next. I already know I have several things to clear up with Mayo and then beyond that…..I still need to do a lot of reading and research to look into second opinions and other options. At least I can say the word, “options” . Two years ago, when this all started with the one intrahepatic tumor, the options were far less.
I will check back in with news as this saga progresses….but in the meantime….I am still grammy to two sweet little boys who need me….and I need them even more right now. There are priorities…..and #1 priority is to be around as long as possible for my kids and grandkids and husband..
Love you all….Julie
Hi Julie,
Real sorry to hear this news from you tonight and wish I could say something that would help right now. Will keep you in my thoughts and so hoping that you can get on with a plan that you and your med team are all happy with, and of course you know I will be keeping everything crossed for you as well. Pickles for the cure, sounds good to me!
Big hugs for you,
Gavin
Julie,
Understandably, this is upsetting. Try to keep in mind that the arsenal of tools to effectively battle this monster is ever growing. You are in my thoughts.
Debbie
Julie….tough news, but don’t let it take over your mind. I know it’s not easy, but knowing you the fighting instinct will set in soon and you will find your path. I would request molecular testing from an independent lab such as Foundation One. Also, like the idea of consulting with the surgeon. Perhaps ablation or surgery presents to be an option with or without additional immunotherapy. As mentioned by you, Mayo is not the only place for treatment, there is the NCI MATCH trial as well as the TAPUR study and other trials you may qualify for.
One step at a time, dear Julie.
Thinking of you and sending tons of hugs your way,
Marion
Lainy, Yes, I do know how you feel about this….and I appreciate your frienjdship and support more than you could know. You ae more than a friend….you are family . Yes, if you were here, we’d be trying the new pickles out of the jar. Hey…maybe pickles are the “cure”. LOL Y up…..I can still laugh….just with tears in my eyes. …..for now anyway. When I figure out what we’re going to do about this…and have a plan in action, I will feel “some” better. It still sucks!
Love, Julie
Julie, you know how I feel about this. Words are not enough. With that said, I also know you quite well and I feel once you get over the bruise from being hit in the head and stomach, you will meet this head on and look over all the choices, you do have choices, and proceed to fix it all! I have read up on Keytruda and it sure seems to be a wonder treatment. Sure wish I could be by your side right now. I know I would get a freshly canned pickle! Glad though that you are home safe but maybe not so sound. You have beat this before and you WILL beat it again! That old CC does not know who it is dealing with. Love Me
I just returned from Mayo Clinic In Rochester where I had my regular 3 month scans. I figured it might be a 50-50 chance that the scans would be clean or not . Since they were clean in April, (which was 5 months past the 2nd surgery in Dec 2015) , I had thought the odds might tip in my favor toward a clean scan. That said…it was not the case.
The CT scan showed that my lungs had no sign of mets, but the MRI of my abdomen showed two new “suspicious” growths, one in the left liver lobe and one in the right liver lobe.
The Mayo onc had already directed the labs at Mayo to do some genetic profiling on the tumor tissue from my last surgery. They are specifically looking for a MSI mutation (Microsatellite insability) , an FGFR mutation or a HERS mutation. They currently have trials at Mayo for the first two mutation. The MSI mutation trial would be using Keytrude if I have that mutation. They do ot have a HERS mutation trial there right now . The turnaround for finding out about these three mutations is about a week…so I am good with going ahead with that. However, I think that they should be testing across the board and specifically for PD1 mutation (which also would be a Keytruda target). However, if I understood correctly, the onc said that the DNA test for PD1 is not reliable and thus they don’t do it. But, if there are trials for PD1….wouldn’t I want to have DNA testing to show i have it?
Mayo’s plan, is that if I don’t have any of the three mutations, then they will set me up with FOLFOX ….but I’m not sure that i the right direction to go. The onc talked to two other gastro oncologists, who both said this is their recommendation. But, my last surgeon had indicated if the tumor/s came back, and they were in an operable position or where ablation could be used if not surgery, that is what he would recommend. I am going to call the onc on Monday and ask him to reach out to the surgeon for a consult .
I’m sure they’d like to have me in their trial at Mayo…..after all….there aren’t that many patients out there who might fit the paramenters of the trial. But, I don’t want that to be my only option. I don’t know if the trial is a phase one or two or three……the question never crossed my mind earlier…so must ask about that as well.
For now….I’m pretty much feeling sucky…… lots of tears….even though I knew this was a high likelihood. I’ll get myself pulled together ….. and move on ….but it sure puts a crimp in my plans for the rest of the year. All I can write tonight….must wrap my head around this new news
Julie T.
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