Mom diagnosed 3 weeks ago with Stage 4 CC
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Rachel….It sounds as if everyone in your family wants the same: for Mom to get better. Finding the solution often causes disagreements amongst each other. I know
Hi Rachael,
Sorry to hear that your mum had a really bad day today, but I am sure that she enjoyed very much the cuddles from her youngest grandson. A great medicine as you say! As to the vomitting, is this the first time that your mum has experienced this? My dad went through this as well, and there are a number of different meds that can help with the nausea. He tried a wide variety of and combinations of meds with varying success, is your mum taking anything for this? One of the problems with anti-nausea meds is that if someone is vomiting then they might not be getting the benefits of the meds if they are bringing them up after taking them. My dad went through this and he started taking Buccastem which dissolves in the mouth and this worked quite well. Suppositories may also be an option here.
My best wishes to you and your mum,
Gavin
Rachel, I just want to say that the Cancer Centers of America have not proven to be the best for CC. A few posts down Jim Wilde mentioned the Cleveland Clinic also and honestly he has done his research.
Thank you all so much for your kind words and advice. I believe we are going to schedule a second opinion at the James Cancer hospital. All of our relatives have advice, as I am sure you can relate…. They say the mayo clinic or Cancer center of America is the best place for cancer. But I don’t think they understand how rare this cancer is, they keep saying things like we’re gonna beat this or that certain diets or hospitals are what she needs to get cured. They say the James isn’t a good option for cancer patients b/c its a research facility. I feel like something like that might be her best option. Her oncologist has said that she is too weak right now to handle radiation and chemo together. So he said either way when she is done she’ll be starting chemo. He is totally on-board with a second opinion and recommended the James. Any and all advice is much appreciated. She had a really bad day today, vomiting bile, no energy and feels out of breath and dizzy when she does anything. I feel like I am in a constant state of worry. On the plus side she spent the day cuddling her youngest grandson (2 months) and baby cuddles are great medicine!
Dear Rachael, welcome to our wonderful family but sorry you had to join us.
I would ditto everything said above but want to add….be strong and go on with any plans you and your family wish to make. Grandma is living and life is for the living. I remember how much my husband loved it when the grandkids came over and they would sit around him like if they didn’t he would disappear.
We try to be realistically optimistic so let Mom know you are making plans and include her in on it. Family is the best RX there is.
Your Mom sounds very brave so I would think she would want to see her family handling her CC with bravery as well. Make this your precious time and make new memories because none of us really ever know for sure.
2nd opinions are of the highest prioity. Bless your family and best wishes to you all and please keep us posted.Rachel…I don’t have much to add to what the others have recommended but would also like to welcome you to our site. Also I would like to add that gaining an opinion from another specialist generally is well received by the treating physician. Often times the physicians will work together in order to coordinate treatments, scans, blood tests, etc. Clinical trials however, are conducted at specific centers only. Unless your physician is included travelling to another site will be required. You have much to consider. We are here to help you along.
All my best wishes,
MarionHi Rachael,
Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your mum. But I am glad that you have joined us all as you have come to the right place for support and help, and you will get tons of that here. And please, if you have any questions then ask away and we will do what we can to help in answering them.
I know how you feel right now when you say that everything feels like it is happening so fast. I felt like that when my dad was diagnosed back in 2008, I was his carer throughout his fight with CC. Like you I had never heard of CC until my dad was diagnosed and one day he was fine then the next day the jaundice appeared. He went into hospital, had all manner of tests and over 3 weeks later we got the news of inoperable CC. I came here after my dad was diagnosed and it was the best thing that I could have done, I got a ton of support and I know that you will also get that here.
I know that your head will be spinning right now but you have done the right thing in seeking more information about this, the more informed you are the better. I hope that you will keep coming back here and please let us know how things go for your mum. We know what you are going through right now and we care.
My best wishes to you and your mum,
Gavin
Hi,
I am a patient like your mother who have CC for 2years living in Chicago.There is a clinical trial currently going on for a while at the cancer center at Ohio state university by Dr.Saab and his oncology team involving the use of Gemzar/Xeloda and Avastin which has shown good results for CC as well as CC which metastasized to other parts of the body.
Your mom has ductal CC and radiation may be of value at this point.Chemo treatment is generally preferred when the cancer metastasized to other parts of the body.The advantage of chemo therapy is especially useful in providing systemic coverage for the whole body .
I think OSU is the best 2nd opinion and place for treating your mom and it is right at your door step.
It makes a big difference if your mom is being treated at OSU as compare to”having consultation with her colleagues at OSU.”and do the chemo for your mom. –a team approach vs an individual making decision;a more coordinated treatment plans(ie: labs,stents replacement,interventional radiation treatment and chemo therapy and detailed check list for the treatment progress.)You are lucky to have OSU clinical trial so close to you.Good luck and take advantage of what OSU can provide for you .
God bless.Rachael, so sorry to hear of your mom’s diagnosis. I would second getting opinions from Cleveland Clinic also. This is a rare disease {around 2000 new cases per yr. in the US), so even the major cancer centers don’t see huge numbers of cases, but they are more experienced than the smaller regional hospitals. Good luck in getting treatment for your mom. Effective advocates are a patient’s best friend. My wife was mine, so I speak from experience.
God bless you.
Thanks Susie for that suggestion! I know her oncologist has consulted some of his colleagues at The James Cancer Institute at The Ohio State University. I do feel comforted that he has had a lot of experience with this type of cancer, as of 3 weeks ago I had never heard of it. I am having a hard time with the wait and see perspective. I am also a total control freak and now I have zero control. I will look into the Cleveland Clinic, I have always heard great things about them. Thanks again!
Rachael,
I’m so sorry to hear of your mother’s diagnosis. I see you are in Columbus. Maybe check out UPMC or Cleveland Clinic to see if they have any options?? I recently received a liver resection at UPMC and they have some experience dealing with this cancer. Take care and keep us posted.
Best Wishes,
SusieNot really sure where to start, My name is Rachael and like the subject says, my mom was just diagnosed with CC. She had been having indigestion-like stomach pains all summer (which ended up being caused by gastritis) but through all of the tests she had done they found a spot on her liver. She had it biopsied and it was cancer, they confirmed it was CC after an endoscopic ultrasound. After a few other tests, we found out it had metastasized to her lungs, liver, and bones. That was a pretty devastating 2 weeks. When she had her endoscopic u/s done they told us they would probably try and put a stent in to help her bile flow. I saw her 3 days before I took her to that appointment and she looked tired and run down, but otherwise great. The morning of the u/s her skin and the whites of her eyes were so yellow I couldn’t believe it. After the u/s was done the Dr. came in to tell me that they were going to try to put the stent in but wasn’t hopeful that it would work. Her tumor is all over the “tree branches” of the bile ducts in the liver. It has caused the part that flows from the liver to the pancreas to collapse and all of the tops of the “limbs” as well. Long story a little less long, the stent was placed but isn’t doing anything.
Our next stop was the radiologist, He basically, in a very tender way, said this couldn’t be any worse. He wanted to start radiation on the tumor asap. Just to see if it would shrink it enough for that stent to start working. She just completed day 2 of 10 treatments.
I am so worried, the end of July she was normal. We would run around and shop till we dropped. She seemed so healthy. Now she has lost 20 pounds in 3 weeks, can’t really eat a thing. She is in a lot of pain and discomfort, mainly due to her sternum which I guess had a heavy concentration according to her bone scan. She is on pain killers and they are radiating that area too. The past 3 days she says it takes 3 hours to get herself ready in the morning, because a simple task makes her dizzy and out of breath.
I just feel like everything is happening so fast. The Dr.’s don’t and won’t even make a conjecture as to how long she may have left, how hopeful they are with the treatment having any effects. I know from what I researched that this cancer is hard to predict, but I just wish one of my questions could be answered. If she doesn’t have long left, there are things my siblings and I want to be able to do with her. I am sure you can all relate. It’s so scary watching someone tumble so quickly.
A little info about her, she just turned 61 Monday and has 11 grandchildren who just adore her. Thanks everyone for listening! I am glad I came across this site.
Rachael
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