November 21, 2015 at 9:11 pm #89997middlesister1Moderator
Last night out he way out the door, I tried to put a quick post, but so sorry it looks like it didn’t go through. I know it will be hard to do, but please don’t let those thoughts ruin your Thanksgiving this year while waiting for the scan (I know- easy for me to say – I don’t listen to my own advice). We’re about to celebrate Mom’s 3rd Thanksgiving since diagnosis. We were also so sure the doctors were correct that in April of 2014, all her siblings traveled to Florida for what would be her last get together.
I know it doesn’t appear good- I hope your doctors are like my Mom’s who say we’ll roll the sleeves up when needed (since you say you’re ready to fight- if not that’s ok too). I hope they find with further testing a genetic marker to act on. There are two clinical trials starting (I’ll ask Marion to correct if I’m wrong) that will allow CC patients easier access to targeted therapies.
Ask your doctors- it can’t hurt. I would go into Mom’s oncologist with some of Gavin’s postings to back me up- I had to push with her ONC to get the second SIRT treatment which helped to get us where we are today.
You are forefront in my thoughts and prayers- I’m keeping my fingers crossed that somehow you’ll get to be the next Melinda story.
CatherineNovember 20, 2015 at 3:22 pm #89996christine1015Member
I haven’t been on here in awhile. Sometimes I stay away so I don’t have to think about things too much
I haven’t had another scan since September. I will have one right after Thanksgiving. My blood work shows the tumor markers on the rise though so that’s depressing. My AFP was always in the 90s and it was close to 300 on Wednesday.
Someone asked about genetic testing on the tumor. MSKCC did that and found nothing!!! They told me that was really unusual and they ordered more tests on it. Not sure what that could mean
I know I still have a lot of fight left in me. . . . its just harder some days than others.
Thanks for the thoughts everyone!
ChristineOctober 18, 2015 at 12:02 pm #89995middlesister1Moderator
We’re all hoping for the best for you. Interesting to hear Barb’s experience with the spots on the lungs.
CatherineOctober 16, 2015 at 4:53 pm #89994dkillion10Member
Hello Christine. Sorry to hear about your news. Keep pushing forward and keep the faith! You are asking good questions to a great group of supporters!/fighters.October 13, 2015 at 4:04 am #89993mbachiniModerator
I also ended up with spots on my lungs 3 months after my resection. Like Barb, I also had a VATS procedure done at that time to confirm metastasis. I think it is worth knowing for sure that is what it is, and if genetic testing has not been done yet, that would be a great time to send in a sample for profiling. Please don’t lose heart, lungs are a very common place for metastasis, but still can be treated. Hang in there, sending hugs and prayers your way.
MelindaOctober 12, 2015 at 7:37 am #89992barbMember
i have not been active on this board for a very long time…. was having a ‘quick look’ before trying to get some sleep and saw your message. back in 2010 i had several lung lesions and had a VATS procedure to remove a section of my left lung that was then biopsied. turns out that lesion was due to a fungus infection called a MAI infection not a metastasis. i don’t want to give you false hope but until one of those lung spots can be biopsied i don’t think that it’s 100% certain that it’s a cholangio met.
i found my own tumor in dec of 2002 and have had 7 surgeries on my liver. i have now reached the point where i am no longer considered operable and am waiting to learn where i go from here. however, i’ve made it this long by questioning and researching, having excellent docs, and in the past learned a lot from this board.
wishing you the best
barbOctober 11, 2015 at 6:02 pm #89991gavinModerator
Real sorry to hear this news from you and I so know that it is not the news that you or anyone wanted to hear. Please do not give up hope though and I know how much this will have hit you. Please know that we are all here for you and a huge hug is coming your way from me.
GavinOctober 10, 2015 at 3:42 am #89990marionsModerator
Christine…so sorry to hear the latest news. I am not a physician, but throughout the years have learned that tumor become resistant to drugs. Physicians will then switch to another available therapy – in your case Xeloda.
Christine, I was looking through your older postings, but was not able to find any information on genomic testing. Had this subject come up in your conversations with the physicians?
Wishing for the absolute best and hope for others to chime in on this conversation as well.
MarionOctober 9, 2015 at 3:37 am #89989gregfMember
I am sorry to hear you received negative news. Why can’t they do surgery to remove the spots? What other options were you offered other than the trial @ MSKCC? Sorry to bug you with questions when you are looking for answers, wish I could help. I will pray you find a treatment that brings hope and successful results.
I just noticed you live in Cincinnati. I have attended many cancer support meetings/presentations in Cincinnati the past year and have never met another CC patient.
GregOctober 7, 2015 at 10:51 pm #11755christine1015Member
I haven’t posted in a long time. I was diagnosed in April and elected to go on the HAI pump trial at MSKCC. Things have been going fine with tumor shrinking and feeling fine. I get chemo in the pump once a month and a round of Gem/Oxalii every two weeks.
I had a CT scan and a MRI today and they found 5 tiny spots on my lungs that weren’t there two months ago. I am beyond devastated. How can cancer spread while I am getting chemo??
My Onc took me off the IV chemo and has me taking Capecitabine now. Sounds like best I can hope for is to keep these spots from growing. Onc didn’t like they could go away entirely??
Anyone else have experience like this??
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