kathyb
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Oh yes. I was put on dexamethasone for nausea during chemo. It worked like a charm for that, but I also gained weight I did not need to. Wanted to eat all the time
Alison,
I’m so sorry your dad has been diagnosed with bile duct cancer. It sucks! That being said, I was diagnosed July 09 with an inoperable Klastin tumor and given 3-14 months max to live. During the first year I was hospitalized 3 times. Two of those times were with “infections”. For me they were blood infections. Infections seem to be a common problem with cc. Have they taken blood cultures? Every time I’ve been hospitalized I’ve had terrible nausea. The 3rd hospitalization was because my stent had blocked and bile was building up in my system. Your dad’s total bilirubin count should probably be below 1.5 if the bile is flowing properly. (Doctors my vary a little on this).
Where are you being treated? It’s important to have a doctor who has experience with bile duct cancer. I had to go out of state to find this, but was able to get an insurance referral as this is a rare cancer and the doctors/hospitals in our network did not have experience treating it.
I do not know how your father’s journey will go. It seems to take different twists and turns for all of us. I can tell you that I am now past 18 months and feeling very good. My doctors have told me I’ve beaten the odds. I have no pain and no symptoms. The tumor is still there wrapped around my portal vein with hepatic artery involvement. Half my liver is gone because of the lack of blood flow, but right now I don’t even feel like I really even have cancer.
May God be with you and your family.
Kathy
Ladybug,
I’ve just read the latest you wrote on Dave’s journey. My thoughts and prayers are with you.
Kathy
I’ve taken dexamethasone while on Cis/Gem. It did stimulate my appetite, but its purpose for me was to avert nausea. Did a great job on that count as I did not have any nausea. I also gained weight which I did not want/need to do.
I was also told “bad luck”. We all interpret words differently. For me “bad luck” is much better than being told you brought this on yourself. It’s sort of comforting in an odd sort of way.
Candi,
Glad your grandma is doing so well after her surgery. She definitely sounds amazing. I also think your grandma and grandpa are fortunate to have you and your son living with them during this time.
God bless all of you.
Kathy
Cathy,
“…I think we will have cured cancer (woops hope Susan G Koman doesn’t see this).”
LOVE your sense of humor! Made me laugh.
For those you do not know about this, Sumsan G. Koman has been using donations to their foundation to search out and sue anyone using the word “cure” or pink in their efforts to raise money for cancer research.
Kathy
Ok, I’m not a close relative of someone who died of cc, I am the person with cc. We should all take better care of our bodies, liver, ect. I was always healthy – never took any kind of drugs except for Tylenol or antibiotics only a few times in my life.
You should do everything you can to be good to your liver, but I was told there was nothing I didn’t do or did that caused me to have cc, and it is not heredity.
Great news! I smiled when I read that Ben gained 20 pounds as I’ve gained weight, too. My tumor did not shrink on chemo, but no new tumors and all is STABLE.
Kathy
Hi Sidig,
I am 61 and have a Klastin tumor (located where the left and right bile ducts meet). There is portal vein and heptic artery involvement which makes me inoperable (would not survive surgery). Half my liver is atrophied (shriveled up because of lack of blood supply). Stage IV. I was given 3-14 months to live. I am now at almost 18 months with no cc symptoms (except chemo brain).
My GI doctor would have liked for me to have a liver transplant, but my tumor grew over the protocol size in one month. I think you can find the Mayo protocol under transplant in the menu.
Unlike your mom, I do have/need a stent. I only have one bile duct as the tumor destroyed the right bile duct.
I was treated at Mayo Clinic in Rochester with daily radiation (except weekends) and 5FU chemo 24/7 (pic line) for two months starting Sept. 09. This was a very hard time for me as I was sick the whole time, in bed almost the whole time, and ended up in a wheelchair when I was taken from the House of Hope to radiation (because of weakness). During these two months I was also hospitalized with a blood infection. This time taught me that even though it may not seem like it, you can get better.
I feel the radiation and chemo combo killed the tumor. It has never shrunk, but it appeared to be a different color after my treatment. At that time my oncologist said it might be dying from the inside out.
Chemo was suggested to me again a few months later, but I was feeling so good I turned it down. There are people on this board who have stayed on chemo a few years with evidently good results. I decided on chemo again a few months later hoping to keep this tumor from roaring up again and to slow the appearance of other tumors. It’s really a hard decision and everyone must do whatever they feel is right for them. I am now off chemo and feeling very good.
As far as diet and supplements. I don’t take any supplements as I’ve always hated taking pills (and yet I agreed to have chemo – go figure). My best friend is a dietitian who has non-hodgkins lymphoma. When she was first diagnosed she really researched the “cancer feeds sugar” philosophy and found no scientific evidence for it and told me to eat a balanced diet and limit sugar as everyone should. I probably eat too much sugar. I do have my “probably false internet cure” which is asparagus twice a day. Your suppose to mash 4 Tbls up and put it in tea, but I could not do that for more than a few days. I just eat four long Green Giant stalks right from the can twice a day which is not very tasty. I figure it has to be good for me, even if it isn’t a “cure”. Who knows though, maybe it’s part of my cure. Everyone reacts differently to medicines and supplements.
At my appointments in Dec. my doctors told me I have beaten the odds. They did not expect me to be here now, let alone with no cc symptoms.
It was hard at first as I would go into the pit of despair, but I didn’t stay there long. I found a couple of Bible verses that brought me much peace. I also have a great support system and many people who pray for me. Another thing that has really helped me during the days of question about surgery, a liver transplant, chemo postponed because of low blood counts, etc. is that I’ve put my treatment into God’s hands. I feel that He is my ultimate physician and will direct my treatment plan, stopping or blocking ones I should not have, so I don’t worry too much about that.
I wish the best for you and your mom.
Kathy
