Delays and confusion
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I don’t know how current this is but thought to share it anyway:
http://www.responsegenetics.com/responsedx/?q=responsedx-colon/kras-mutation-colon
I read in Devoncat’s post about the KRAS genetic testing. It seems to be a test of the tumor to see if it is mutated. It seems that if it is, your tumor is more aggressive and doesn’t respond as well to treatment. Also, there is a therapy that if you have a mutated gene then you will not respond well to the therapy and there was one case where the person died. I had the testing and mine is not mutated but I am not sure what that means other that what I wrote above.
Kris,
I read your post and wanted you to know I am thinking of you. This is such a difficult journey and I so admire your strength. When you mentioned being tired of “the roller coaster of hope and despair”, that is so true. This journey for many of us has been getting our hopes up one day only to be let down the next. The many posts I have read have given my husband and I the strength to continue to have hope and a postive attitude as well as the love of family, friends and prayer.I wanted to share with you what our doctors told us about the PET scan and this might be helpful to you regarding the reason your doctors may want to do additional tests. Our doctors both in Wichita, Ks. and Johns Hopkins in Baltimore, Md. both ordered Pet Scans to help with determining if surgery was possible. For example, my husband had a PET scan before surgery to show the doctor whether or not the cancer had mestasized. My husband’s results showed that the only “activity” on the PET scan was contained in the Bile Ducts. So the surgeon proceeded with surgery only to find out when he got in, that the tumor encased the major blood vessels on both sides of the liver and a resection was not possible. It has just recently been approved by our insurance company to use PET scans for bile duct cancer. Basically what the doctors told us the information from the PET scan is useful, but other imaging tests are needed and give them more information. I was always under the impression the PET scan showed more information but in the case of bile duct cancer, the doctors need additional tests. I don’t know how helpful that information is to you but I wanted to share our experience with you. What we learned is that the PET scan is more useful to the oncologist and radiation oncologist rather than the surgeon. After chemo and radiation treatment, my husband is now being monitored every 3 months with a PET scan and CT scan. Please stay strong. I am thinking and praying for you. This site is and has been a blessing to my husband and I.
Hi Yo, Yo. So sorry for what you are having to go through. Sometimes I think the roller coaster ride is worse than anything else. I am sure your Grandfather is extremely proud of you now. I cheated in Gym a lot:)
After what happened with my dad when he was dying and seeing Heaven, I just know that all our loved ones are watching over us. A non believer would never say he saw Heaven. I know you will pull on the strength you have and that you will feel better after you ask all your questions. Did you ever move to that cottage your husband bought for a vacation spot? Try to keep your spirits up as you know we are huge cheerleaders for you!Kris, as always I am sending my best thoughts, prayers and wishes your way. You are an incredible woman and cancer warrior. You remind me of Jeff in a way – always asking questions, and always fighting for the best treatment.
I like beer, too, and miss it. So I get the “O’Douls” brand of non-alchoholic beer once in a while
Louise,
I had to smile when you said your mother was being visited. I once was “visited” by my grandfather in a dream. I had cheated on a science test in 5 grade. That night I dreamed my grandfather was telling me how disappointed he was in me and how I didnt deserve the family name. I HAD to confess the next morning. In fact, I had to stay home from school because I had made myself sick with guilt. I think loved ones visit us when we need them and to help us on our path.I often talk to my grandparents (all deceased). And maybe when my time comes, they will guide me through it…I am sure my mother’s mother will be in command, she sure was a bossy bit of goods!
Kris
Kris,
I can relate to the ups and downs of this rollercoaster ride and to the meltdown. Your last paragraph made me want to both laugh and cry.
I had the Gemzar/Cisplatin combination and did not need an overnight stay. They did regularly (every time I had chemo) do blood chemistries that allowed monitoring the kidney function. Want to ask how quickly the Cisplatin can affect the kidneys and what they do to stop or counteract that affect? Sure puzzles me.
I’m so glad hope wins out. Today, it is not even my own cancer that has me on the rollercoaster. My Mom also has cancer but she is in her last days. She fell last week (88 years old) and seems to be living with one foot on the ground and one foot in the next world. She asked someone if her casket had arrived yet (Not trying to be funny) and later she asked my sister what time her own funeral mass would be. She has visitors from the other side, too–Dad, her sisters, his mom, … Heartbreaking but laughable. Mom lives about 3 1/2 hours away, and I’m going today with plans to stay about a week.
I’m not trying to mitigate anything you’re going through, but I find that it is too easy to slip into the pity party when I think about myself, but when I think of others, I know I’m not alone and I may not even have the worst lot of frustrations. You are in my thoughts and prayers. Your strength, humor, and honesty with all you are going through have meant a lot to me. When I first started reading your posts, I thought you were a macho guy and was delighted to discover my error.
God bless you!
LouiseI start my new regime on the 17th. That is a break of almost 6 weeks. I think that is way too long. We just got off the phone with the nurse and I am scheduled for Gemzar only right now. Cisplatin can not be administered where I live because they require you to spend the night after to monitor your kidney function as it has such a high rate of causing kidney damage. Cisplatin would have to be administered at another hospital, 3 hours away. The trials of living in the middle of nowhere Sweden. The nurse did not know if I would be getting cisplatin or not…seems like I am going to have to get a little forceful and push for it. I also need to push for erbitux or vectibix…those are like Avastan. Apparently, you decide which one to use based on if you are KRAS mutated or not (whatever that means).My tissue samples were lost in the mail, so we dont know if I am mutated or not, but since avastanhad no benefit, why not give the othersa try?
I also found out that the surgical team wants another ultrasound with contrast for my liver. If you havent heard about contrast with ultrasound (my bestfriend the oncologist hadnt), it is something they do in Europe. It statiscally gives the same results as ct scans and mris, but the surgeons I am dealling with believe it is the best way to see problems in the liver. I am SO confused. Surgery has been ruled out because the PET scan showed active and growing tumor in the liver. I was told that I could not have surgery if they could not remove it ALL and that they could not remove anymore from my liver because I didnt have enough bile duct material left from my last surgery. So if it is in my liver, which the PET scan indicated, why have another ultrasound to determine if I can have surgery? Can PET scans be wrong? I am happy the surgons are still interested in me,but I feel like hope is continueally being waved under my nose, then snatched away. What are they looking for?Why bother after the PET scan? I have so many questions and my oncologist is on vacation and the nurse doesnt know!
I had a meltdown last night and cried and cried. And today I find out the surgical team wants another scan? I am tired of this rollercoaster of hope and despair. Ok, I will calm down in a bit. And for me,hope always wins out, but boy am I tired of the yo-yo of emotions.
On a bright note, I found a pretty good tasting beer with only .5% alcohol so it wont cause anymore liver damage. I have been partaking of it with a wedge of lime and sitting outside enjoying what is left of the Swedish summer. Isnt it funny how simple pleasures mean so much more now?
Kris
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