iowagirl
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Caton, Welcome to the CC Foundation boards. We may not have all the answers here, but hopefully, you will find enough from our personal experiences as patients, and some of the very solid info from some of our longer members, to help you make decisions regarding your treatment.
I had a resection on Feb 28, 2014, for intrahepatic CC (5 cm and one very tiny one about 1/4th inch or less) clean margins (2.2 cm) , no neural or vasular invasion, no lymph node involvement . My left lobe of the liver was removed to get rid of the CC completely, which was fairly aggressive, considering the outlying position of the tumor and tiny sister tumor). I was urged very strongly by the Mayo oncologist to do adjuvant chemo (gem/cis) and was told flat out by the surgeon that I WAS doing chemo. In the end, though, it is the patient’s decision. After much reading and research, I decided to go ahead with the chemo, despite reading that there is no definite evidence that it works to kill microscopic CC that “could “still be floating around post surgery. I was aware of the possible side effects and issues of the chemo, but decided that IF the CC returns, I did not want to find myself in the position of saying, “I should have done it,” just in case it might have worked to kill any residual cancer cells. Despite throwing a blood clot from my leg to my lungs during the first chemo requiring a week in the hospital, losing all my hair, eyebrows and eyelashes, dry heaving almost every day past the 3rd round of chemo, having my hemoglobin go down far enough to require two blood transfusions, platelets go extremely low close to the end of chemo, developing some neuropathy in my toes, and suffering some kidney damage that appears to be irreversible/permanent…..I would make the same decision again…even with hindsight. Chemo has changed me….mostly for the worse…..but so has CC. However it has changed me, I will live with it…as long as I get the chance to “live”.
Some people are scared of chemo……how it will feel….etc. I am glad to share those experiences with anyone who is considering chemo…….experiences that might help you get past the first one and through the whole ordeal. I was terrified the first time…and sat there with tears down my cheeks, but the actual infusion was much less than I had built up in my mind that it was. As for the side effects and damage it did…..it’s a small price to pay, if it gives me insurance that the cancer won’t return. Of course, I can’t know the latter for sure….ever….but I at least know i did all I could.
Julie T.
Iowa GirlJulie T.
erashid, I forgot to mention that it isn’t impossible, but extremely rare for CC to move to the brain . I have only heard of two cases of it in the reading research I’ve done. You should mention the headaches to your mom’s doctor, as they will want to know about them, but since it is so rare for CC to go to the brain, I wouldn’t worry too much about it unless the doctor gets concerned.
Julie T.
erashid, I had intrahepatic cc diagnosed in Feb 2014 with a resection Feb 28, 2014. All is goingn well here also…thus far. However, I have to say that I have had a few headaches……which I believe may be stress ,related to scaniety. I’m nnt prone to headaches normally…..can count on one hand the number of headaches I’ve had my entire life, until post CC surgery and chemo.
Hang in there.
Julie T.Jessica, What a really crazy, and I’m sure you feel, unbelieveable year you’ve had so far in 2105. A new baby…..how wonderful…….as a baby is a sign from God that life will go on. Congratulations on becoming a mother again. I’m sure that has almost been lost in the transplant surgery and surgery again….and now looking at chemo when you’re well enough. It will be all worthwhile though, if it keeps you here with your babies. Rest….while with a 2 year old…..and new baby….doesn’t really sound possible, this is the time to ask for help from others…to do mundane things like laundry, or cleaning, or cooking….and save any of your precious energy for your recovery and time with those babies. I don’t know if it is availablel in your area, but here, at least one cleaning company will come out and clean the house of someone in treatment or recovery from cancer. You might check into it. I found about our local company by reading their website.
For now…….we have to believe that this has been found early and you are going to be around a very long time for those sweet babies.
Julie T.
Mizzey100,
During chemo, I had blood checked for basic stuff….liver function, red blood cells, hemoglobin, kidney function, white blood cells, bilirubin, and a few others that are in standard blood profiles.
They watch some of this for toxicity that might signal a need to stop the chemo, but also for white blood cells, to make sure you are able to fight infections….or need treatment for that…or to sit out a week or two from treatment.
I did sit out one week toward the end of the chemo, because my hemoglobin dropped so low and the white blood cells were also very low. That one week worked wonders even though the last chemo I received knocked me back again. It was a good decision to make, IMO, to sit out that week and let my body recouperate a little more.
Before each scan I have, they do a basic blood profile, checking all the same items, to see if there is any change…better or worse. I never did have anything out of normal before diagnosis….liver function, billirubin ….everything was normal. Since my CA 19-9 test was also normal prior to diagnosis, they don’t even bother with it nor any of the other tests they did prior to diagnosis, since all were normal and didn’t indicate the cancer was present. They have told me that there is no point in repeating those tests as they aren’t likely to show anything if the cancer returns, either.
Julie T
Matt…..First…..bravo….as much as you are growing tired of treatment….you have so much to live for…..in the long term….that I would venture that you know it is worth the try to kick this cancer . I get it about doing the chemo and losing some feeling good time. But, you know that if you didn’t do this…and it did come back again….you’d be kicking yourself and asking, “What if”?
HEY……I think we’re going to meet finally if you’d like. My husband and I will be up there on the 9th and 10th of July for my next scans. I have blood tests and scans during the day on the 9th….so free that evening (which is a Thursday). Then, we have the consult and get results on Friday morning. Normally, we’d be doing this all in one day, but my oncologist has now only morning hours, which makes doing it in one day impossible.
I’ll be in touch with you again before we go up to Mayo. We always stay at the Kayler Grand Hotel right across from the clinic for convenience. So, maybe we can pick you up and do dinner if you feel like it…or just sit and chat for a while if you’d rather. We can see where you’re at , at that point. It’s only a short three weeks away.
Julie T.
IMcherry……that’s pretty much what I was told also….not to go get new glasses or eye exam until a good amount of time after the chemo had ended to allow everything to normalize again. I just “got through it” and it really didn’t bother me THAT much when I knew what the problem was.
Imcherry, I , too, thought I had vision changes with Gem/Cis and a few months after I was done with chemo, I went to see my opthamologist on the advise of my oncologist. The guess was that the steroid used during chemo had raised my blood sugar and screwed up my vision for a while due to high blood sugar.
He checked my vision, which came out almost identical to what it had been in the year before I had surgery and chemo,. So, apparently, whatever vision disturbances I had, were resolved when the chemo and steroids were done and discontinued. However, I also still felt that my vision wasn’t as good as it had been. That’s when I discovered that my lenses in my glasses were pretty badly scratched and thus, I couldn’t see through them as well. I just hadn’t paid attention to them much during the chemo to notice. .. LOL Had to laugh, to think two doctors and I …none of us thought to consider the scratches.
Julie T
Kerry, What a wonderful man your father must have been…and what a wonderful child you are. The nut doesn’t far fall from the tree. I hope that someday, when I breathe my last, my child remembers me in such a wonderful way.
Julie
Jason,
I don’t know if you have sought out Mayo Clinic at Rochester yet or not, but they will review the case in 2-3 days (probably 2). My surgeon there was a Dr. Kaye Reid Lombardo, who only does liver and pancreatic surgery. She is a very gutsy surgeon who doesn’t shy away from difficult surgery. My surgery was pretty clear cut,….could have been done any number of places with no question about it (tumor inside my left lobe….so she just cut out the entire left lobe). But, I know she has done some absolutely incredible surgery on people who were previously told they were inoperable. One woman I know, was turned by by at least two other large institutions and even one other surgeon at Mayo. She is still alive with no recurrence a number of years later.
You can call Mayo Clinic and talk to their oncology department …tell them everything you know….and they will review it. If you can somehow fax any reports or overnight copies of scans….it will help.
Julie T.
Jenny,
I went to Mayo for a consult appt and had surgery the next day. I got tired of waiting for our local medial wheels to grind as slowly as they do, so I called Mayo myself. I had written down everything I already knew about my condition (not diagnosed yet as cholangiocarcinoma), all the test results, and arranged to have samples of the biopsy sent to them . I told them I could get my local doctors to send copies of the CTs I had done here. The lady took all this info and said someone would be back with me in 2-3 days to discuss an appointment after the info was reviewed by Mayo oncologists. They did indeed call me back in two days and set up an appt within a week and a half. I hand carried my CT copies to my appointment (instead of mailing them) and a copy of all of my blood work results and other testing.
Actually, I got most all of this done, and then finally the local doctors told me that it appeared that I probably could have surgery to cut out aa section of my liver where the tumor was, but they did not recommend I do it locally, since it was a big surgery and we had no one here locally who was really qualified. They mentioned that I should either go to the University of Iowa (just 30 miles away) or to Mayo. I then told them that I’d already contacted Mayo and had an appointment set up already to boot. Fortunately, they didn’t feel like I’d stepped on their toes…and I had an appointment probably a week earlier than I would have if I’d waited.
Anyway, I expect that Mayo will get back to you pretty quickly, as they did with me.
Elaine, I wish you nothing less than a fantastic news and a good surgery and fast healing….and I offer prayers to guide the surgeon’s hands.
Julie T.
Cathy….I’m celebrating with and for you too. Keep coming back more often….and next year this time for another great “What’s working.”
Julie T.
Carol,
Welcome to these boards and I hope they help you find some answers and some friendships. Fallling through the cracks is not an option, so I’m glad you are very proactive and got an appt with Duke so quickly.
I did not have symptoms either…nothing that would indicate something so awful growing inside of me, and my tumor was found at stage T2-b by accident. That’s the nature of this cancer…..as it grows silently.
Leet us know how the appt at Duke goes …we’ll be here.
Julie T.
