May 3, 2017 at 8:02 pm #94722marionsModerator
Hopeseeker….according to your posting there is no to believe that your MIL won’t enjoy the upcoming gathering. In fact, this may be the best medicine for her. Hoping she rests when needed and enjoy the family.
MarionMay 3, 2017 at 1:58 pm #94723
My MIL had a follow up appointment with her onc yesterday. She is feeling good, but her platelets and white blood count is down. I figured that was typical of chemo and the reason they give a week off sfter her heavy and lighter chemo treatments. 2 weeks on, one week off.
Her next big treatment will be Tuesday, and I am hoping she doesn’t get sick this time because we have a big family gathering on my husbands side for Mother’s Day to celebrate and enjoy time together.
She has been very weak and tired, but the onc said her bilirubin level was good and liver function was good also. Those were both positive and great reports for us to hear!!May 2, 2017 at 12:59 am #94721positivity wrote:Hello Hopeseeker,
Welcome, and thank you so much for sharing. It takes courage. All of us are in that state of shock and not understanding how this evolved and possibly not even heard of bile ducts. It was a shocking experience for me as well. It’s great you are helping with good nutrition, supplements, small meals, positive outlook as these are components in healing also. Chemotherapy is a personal choice and I understand individuals respond differently, but as hard as it is don’t listen to a time frame of a doctor. No one can determine the exact time frame a person has to live. Whether they are correct or not does not matter, as you are trying to help and find options. Are there alternative you can seek other than chemotherapy that are suggested by the oncologist? What do they recommend? What type of chemo are they using?
It seems that maybe she is receiving Oxaliplatin. KarenD had some info on it for me and it seems it can cause rashes also which she is currently experiencing.April 29, 2017 at 3:40 am #94720
No other treatments were suggested other then chemo and I am not 100% positive of what type she is taking. She does not have insurance due to her not being able to set it up at work where she was training. She is 59 and will be able to get long term disability which will also give her Medicaid. It’s just a rough situation all the way around. She was caring for her very sick husband before this prognosis. She lives many hours away now with her sister, but we try to keep in touch and help with research and advice as much as possible. She says the oncologist is very knowledgeable and kind. She was very sick after her first chemo treatment but was much better after her second round. She is in good spirits. When she was admitted to the hospital at the end of march her liver was not working, so that was also a concern of the drs. I’m assuming it was from the blocked bike duct. We we so blindsided by this that it felt like a terrible nightmare that we would wake up from so many details were lost on me as it all sunk in.April 29, 2017 at 2:01 am #94719middlesister1Moderator
In 2013, when my Mom was diagnosed, I was looking for hope too. After an unsuccessful surgery ( they just closed her back up ) we were told 1 year and chemo might give her 3 additional months. Mom is still going strong- although she is not the norm, there are more and more success stories. We were told no cure without surgery, but we are fine with long-term remission. We found a doctor who did aggressive radiation and she is a survivor.
There is hope.
Where is she being treated? I agree with Lainy on getting multiple opinions and asking about genetic testing and clinical trials. Although we ultimately have to trust in the doctors, we also can push to find doctors who know how to treat this rare disease.
CatherineApril 28, 2017 at 5:21 pm #94718positivityParticipant
Welcome, and thank you so much for sharing. It takes courage. All of us are in that state of shock and not understanding how this evolved and possibly not even heard of bile ducts. It was a shocking experience for me as well. It’s great you are helping with good nutrition, supplements, small meals, positive outlook as these are components in healing also. Chemotherapy is a personal choice and I understand individuals respond differently, but as hard as it is don’t listen to a time frame of a doctor. No one can determine the exact time frame a person has to live. Whether they are correct or not does not matter, as you are trying to help and find options. Are there alternative you can seek other than chemotherapy that are suggested by the oncologist? What do they recommend? What type of chemo are they using?April 28, 2017 at 3:27 pm #94717
Thank you for your advice and I can tell this will be a very helpful place!April 28, 2017 at 2:46 pm #94716lainyParticipant
Dear Hopeseeker, Welcome to our remarkable family and the best place to be for CC support. We know when you hear the word Cholangiocarcinoma it is a whole lot to take in at one time. Here are a few items that may help you through the first leg of the CC journey.
Knowledge is the most important tool to begin this fight. When you have a chance, read some of our Members posts or if you have a question you can use our Search Engine at the top of the page. Type in a word or 2 and many posts will appear on that subject.
Make sure that the Oncologist you choose and the Hospital for treatment, are very experienced with CC. Don’t be shy about getting 2, even 3 or 4 opinions. This is a very rare Cancer and no Doctor will mind you wanting more opinions. Keep a folder of all test and LAB results.
Here is a site you may find helpful: http://cholangiocarcinoma.org/newly-dx/
You and she are doing all the right things. Good that she is already grazing all day on food instead of 3 big meals. I am hoping and wishing for her to get a good report on tumor markers.
Please do keep us updated on your Mother-in-law’s progress as we truly care.April 28, 2017 at 2:08 pm #13263
Found this site while searching for information about this type of cancer. I had never heard of it before, as I guess most of you had not either until a diagnosis struck your family. My MIL (who was a smoker for most all of her life, but had quit about 2 years ago) started having pain around July 16 but didn’t get checked out. She thought it was just a bowel blockage or something. End of March she checked herself into the ER due to very severe pain. She was very jaundiced and a large tumor was blocking her bile ducts off. She had an ERCP in which the DR put in 2 metal stents. One in each branch of the bile duct into the liver because the tumor was right in that section. Oncologist said it was non resectable, had spread to gallbladder, pancreas and lymph nodes were also involved. He gave 3-6 without chemo and 9-12 with. My husband was devastated. She has since been on 30 mg slow release morphine and breakthrough pain meds also. She has had 2 rounds of chemo and now a week off. She will continue this treatment type for as long as it’s working. No results on tumor markers yet, but I’m sure we will get an update after her next round of chemo. We are believing for a much better outcome then what the drs are saying. She is in very good spirits with high hopes of healing and health. She is taking a good multivitamin and trying to eat small meals. We have never faced anything like this so I have been doing research and looking for help in this area. She is a tough woman, and I think she has a lot of fight in her to make it a very long time with this.
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