Survival…Please tell us your latest milestone
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- This topic has 227 replies, 63 voices, and was last updated 3 years, 10 months ago by bglass.
November 2, 2016 at 11:49 am #64589genevieveSpectator
Last week marked five years since my husband’s first resection for multifocal intrahepatic cc.
He’s had three resections (10/2011, 7.2012 and 7/2014), two lots of adjuvant chemo, and a microwave ablation (11/2015). Last scan (August) was clear. He is physically very active and apart from a large surgical hernia which will need to be repaired some time soon if he stays clear, appears to be well.
GenevieveOctober 1, 2016 at 10:55 am #64592
Wonder, Congrats on 5 years, a great start! My C 19-9 has changed over the years, the first 6 years it was always around 10 or 12 and lately it has come down. My onc. said smoking cannabis would elevate the reading, not to worry. i would look at your levels just before your resection surgery to first determine if the C 19-9 was elevated when you know cancer was present. C 19-9 is not always an accurate indicator of the presence of a tumor. How elevated is your level? Understand it may not be a re-occurance. Try to not panic until an image verifies such a thing. This cancer will fool everyone, the doctors and the patients quite regularly so try to be strong. Elevated levels are sometimes a reason to look further with an MRI or a CT scan . It is your doctors call but if I am worried I ask my doctor about taking a look, and one time we did and it was a false alarm. So my plan of action would be to schedule an MRI or scan and let a radiologist take a careful look. It is part of the excitement of being a long term cc survivor, welcome to the club. If one was just done I would do another blood draw in a few weeks to see a trend up or down. The upside is you are living a life which was impossible 50 years ago, so every day is a miracle over and over. I hope this is just a hiccup in the system, good luck, PatSeptember 30, 2016 at 7:54 pm #64593
Woder….welcome. I hope for others to share their thoughts on the rising of, the liver enzymes coordinating with the elevated CA-19 tumor markers. Has this been an upward trend for some time now, or is it a sudden occurrence?
MarionSeptember 30, 2016 at 6:09 pm #64594lainySpectator
Dear Wendy, welcome to the best place to be for CC support and where you will find the nicest and smartest people the world over. First of all a BIG HURRAH! for a 5 year anniversary. Way to go! I would imagine that your ONC would talk to you about the high numbers and tell you what should or could be done. I would give him a call and ask him or make an appointment to see him.
Five years is just great and wishing you continued success and please keep in touch. By the way, could you move your post to the Introduction page as I am afraid it may get lost here and others may have some answers for you. Thanks a bunch.September 30, 2016 at 5:47 pm #64595wonderSpectator
I am celebrating my five years since my resection. My MRI looked great! But my ca19-9 was very high, as well as my liver enzymes. Have any of you had high numbers that come and go?September 28, 2016 at 3:09 am #64596
whatnow…..it is a never ending learning cycle with this cancer. Know that we are here to help you understand and don’t hesitate from asking question. The members of this board understand, as all of us began were you are now.
The CA 19-9 tumor markers most often are used as another tool in determining if the tumor is growing, remaining stable or is getting smaller. It is not an absolute and can rise for other reasons as well. On it’s own, the maker does not carry much value.
Good luck tomorrow and hugs to your kids. We are in this together.
MarionSeptember 28, 2016 at 1:45 am #64597whatnowSpectator
This website is a Godsend. When first told about liver cancer from my primary dr., my son and I were given the impression I had about 6 months (along with info from internet). At last chemo the NP said my tumors were shrinking, but I need to ask tomorrow how she knew that from blood tests. Still so much to learn. Tomorrow (chemo time) I’m gonna ask what CA-19 means.
Tomorrow I have a free 15 minute acupuncture session during infusion. I just look at what is good about this silly thing and make the best of it all. Because of this website my kids are not as freaked out. Love, love, love and need the survival stories. ThanksSeptember 21, 2016 at 6:03 pm #64661
The drug is called Meloxicam, it was initially prescribed for a bad shoulder joint which is an old injury that is a source of pain when the weather changes. I noticed after beginning the medication my stools are dark and my urine has returned to light yellow. When I spoke with my doctor about this, he told me when any part of your body is sending a strong pain signal to the brain a stress hormone is released causing numerous sites of scar tissue around the body to “light up” as he put it with inflammation. We are not only treating your shoulder he said, but your scar tissue in your bile duct as well. This has worked well now for almost two years, we have increased the dosage from 7.5 to 15 mg. which worked better. It is a reasonably priced pill at 1.00 for a thirty day supply. It is hard on the stomach and must follow a decent sized meal. There it is Marion, the whole enchilada. I hope someone can put off a stent as I have , as that is often the site of further life threatening problems (not always though…I know a 20 year liver transplant patient with a metal stent that has been in place for more than ten years ) so stents are not always problematic. He is doing incredibly well also and he is one of my hero’s . Thank you all again, PatSeptember 21, 2016 at 5:16 pm #64663
Hercules….these type of updates are enormously important to us. Thank you. Scar tissue build-up is one of the problems many others encounter. What is the medication you take? I assume it is not Ursidol.
Again, thanks so much, dear hercules for your continuous interaction with the global patient community. You rock.
MarionSeptember 21, 2016 at 10:46 am #64662
Here it is September 21st already, the day eleven years ago an ultrasound discovered a soft tissue tumor in my left hepatic duct just before the point where left meets right. Wait 6 weeks to see a Gastrointestinal specialist, wait 3 weeks for ERCP then wait 5 days for results/recommendation, then make appointment to see surgeon, it was 4 months before anything was actually done, a liver resection removing 60% of my liver (left side) January 26 of 2006 I was home in 5 days, healed well, had no further complications, went back to work in ten weeks, and have managed to have a normal life since. I have restriction issues in the duct as it builds scar tissue at the point the bile duct was sutured together. My primary care doctor helped me find that an anti inflammitory drug that opens the restricted bile duct enough to keep things working. I am healthy and able to do anything a man my age can do. I am pleased to share that another year has gone by without any difficulty other than taking a pill every day. I suppose it doesn’t get better than this. Sometimes things do work out well, just not often enough. I try to show every day I am grateful to be here by helping others and giving more than I take as a rule. Stay active, be smart about what you put in and on your body, and don’t think about cancer all the time. Try to stay busy enough to not have time to even think about it. I guess that is my story, I had many good breaks through it all and I hope the stars align for someone else soon. God bless, PatSeptember 11, 2016 at 12:17 pm #64789middlesister1Moderator
My thoughts are with you and your family. I look back on the past few years and realize that life changes not only for the patients, but for all their loved ones. My mother is now the caregiver to Dad, and she says it was easier being the patient than seeing what it’s doing to Dad (lung cancer with brain mets). I’m sure your support has and will continue to help your sister with her fight.
CatherineSeptember 11, 2016 at 5:54 am #64788sallypaMember
my sister has been living with this terrible disease for 6 years now. she is still fighting it. it keeps spreading and she keeps fighting. it has now most recently appeared in her colon. this fight is tiring. she will be starting chemo and radiation again soon. hopefully it will work. i don’t get to post much anymore as besides my sisters cc my mother in law has alzheimers which keeps us busy as well. i hope they can find a more effective treatment for my sister soon.February 17, 2016 at 1:54 pm #64785jacdollMember
This is so inspiring to hear of these milestones. I hope to have one to share for Tom soon! I tell him almost daily about all of you who are in the midst of surviving and those with NED. it makes both of us so happy. nip this deadly sucker in the bud!January 14, 2016 at 2:10 am #64784debnorcalModerator
Julie, Catherine and Marion,
Thank you for your good wishes. Mike and I are grateful for our many blessings, including having this forum to guide and encourage us on this journey. The caring and support you and the other members of this board is so very much appreciated.
Hugs to all!
P.S. We are looking forward to seeing you and others at the conference – just a few weeks away!January 13, 2016 at 7:46 pm #64783
Debbie and Mike….celebrating right along with you and a great story to share with others at our upcoming, annual conference.
See you there.
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