Newly diagnosed…what next???
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fightforlj….I believe that treatment may start anytime after 6 weeks. At least, that is what we had been told and that coincides with the postings on this board.
Best wishes,
MarionDoes anyone have any idea how long after a colon resection can my brother start a chemotherapy treatment for CC?
Dear Fightforlj, sorry to have to welcome you here but you have found the best little club in the world. No one but our members can know just how over whelming the DX of CC is. If you look at the top of this page, right hand corner we have a great search engine. Just type in a word and search for just about anything. It is your right to get other opinions, and I am sure you feel like you are sitting on a time bomb. Maybe someone here can tell you if they sent records to MD Anderson how long it took to hear from them or perhaps someone from Calif can direct you to a closer place where your brother can be seen quicker. Take a deep breath, its a bumpy ride. Please keep us posted.
Welcome Saving Grace to our little world. One big rule most of us have is, if you have any doubts at all it is your right to get another opinion no matter how bleak things may look. Gather copies all his records and forward them to another hospital like MD Anderson. As for a time limit we say, one is not born with an expiration date on the feet. We have had people with a bad DX refuse treatment (not saying he should) and live another couple of years. This is a very erratic monster and the only thing we know for sure is we know not much. It does sound like he has had excellent care. As for a PET Scan they have been invaluable for my husband, not sure what more you are looking for. If you look to the top of this page, right hand corner we have a great search engine. Just type in a word and search for just about anything. There are no right or wrong decisions with CC, we do our best and don’t look back. Not sure if you have read up on CC but it’s a good idea to know what you are dealing with. It really helps in your decision making. Please keep us posted, we all care.
Hello Everyone: I am new to the forum and my 18 year old daughter’s father (my ex-husband and friend) has been diagnosed with stage IV cholangiocarcinoma..It has metastasized to his liver and is so advanced they are doing palliative chemo only.. of cisplastin and gemzar….After the ERCP they didn’t see any cancer in the lymph nodes or pancreas but multiple inoperable tumors in the liver and severe obstructive tumor in the common bile duct. He has had four treatments and we are awaiting a recent C-19 tumor marker test to see if his numbers are coming down…they were 1919 to begin with and dropped a bit after the stent was placed. We have been told if they don’t see a drop in the C-19 marker that they will recommend he stop treatment and contact hospice. He also has a CEA of 325. He has a few other co-morbidity factors , type II diabetes, peripheral artery disease, and severe aortic stenosis. I can’t say enough about the quality of care he received at California Pacific Medical Center in San Francisco that has a top notch liver program…but we have not had a second opinion. A member of my church is a radiation oncologist and said if he starts having pain as the cancer progresses…they can do radiation. That is a relief as I have promised him I would do whatever I could to alleviate any suffering.
So here are my questions: Would you recommend a second opinion at M.D. Anderson or Mayo Clinic or someplace else??
If the chemo isn’t working any idea of how long he may last…Dr. says could be weeks to months but I have heard different. His appetite is good and he is having minimal pain.
Is a pet scan necessary at this point to see where else it is in body or is that not necessary?
Are there any trials that look promising to someone in this situation?
Finally, I wanted to mention that he had been taking Byetta for the diabetes since 2006 to end of 2008 with increasing stomach problems and nausea…but stayed on it because he didn’t want to gain the weight back that he had lost…
I now see that they have made the manufacturers post a pancreatitis warning..
and I wonder if this factored into his bile duct cancer!
Thank you all for any feedback that you could give us…Feels like time is running out…God bless all of you and thank you for this site.WElcome to the site. We do our best to help, support and encourage each other. CC is a tricky cancer. That said, sometimes we see small mooments of hope and miracles in amongst the heartache.
Now, as a nurse, you know your brother has no expiration date stamped on his foot. So listen to that doctor about 6 months, get his affairs in order, get done and said what needs to be, then pull out the battle armor and get ready for the fight.
Surgery is the best option. Some surgeons are more aggressive than others. However, most will not try to remove cc without being able to get it all. I was told that if any is left behind, it grows and spreads FAST after the surgery. Does that mean your brother cant have surgery now? I dont know. It depends on how and where it has spread and if it has wrapped around arteries. Gather your scans, test results and what not and have them sent to some of the major cancer centers given on this website.
On to chemo…some people really respond well to chemo. There are members who had their cancer disappear completely and others that had it shrink enough for surgery. But it doesnt happen for everyone. Some people handle chemo well, and some dont. Your brother needs to weigh the odds and what his desires are. I am on my second chemo cocktail because the first didnt help me at all. there is no way to tell before you start.
Best of luck to your brother.
Kris
Welcome, welcome, fightforlj. I’m sorry I can’t answer your questions, myself, as my sister’s experience isn’t the same as your brother’s, but there are people on here with a wealth of knowledge & I hope some will be able to help you.
I’m not at all surprised you’re feeling overwhelmed with the news you’ve all been given. As the shock subsides, I hope the path will become clearer & you’ll all feel less helpless. In the meantime I send my very best wishes to you & your family in your fight.
Julia
I am so extremely happy to have come across this forum. I need serious guidance of what to do next. My 34 year old brother has been through tests, labs, scans, etc. The doctors concluded he has two SEPARATE cancers: colon cancer and cholangiocarcinoma. The doctors decided to try surgery, they went in this past Thursday. The plan was to resect about 25% of the right lobe of his liver and part of his right colon. When the surgeon went in, he discovered the liver tumor was larger than he expected, it had grown to outside of liver, spread into his mesenteric peritoneal region. They described it as implants on his right diaphragm and surrounding right peritoneum area. The surgeon opted to leave the liver and only removed 12 inches of right colon. The surgeon told us his findings and said there was nothing surgically he could do but chemo and he gives him 6 months.
Well, my dad, his wife, my brother (the patient) and I are not exactly taking that as our answer. So here we are recovering from his colon resection in the hospital as I type. I am a RN myself but still feel completely overwhelmed and not sure what step to take next. I want the best treatment hospital and option for him, he tells me he wants to LIVE! So I told him, i will MAKE IT HAPPEN!
What we have done so far…we are working on sending the pathology reports from his surgery as well as all of his past info to MD Anderson. I just feel like a sitting duck right now. I want to see something happening. I feel like time is ticking and this needs to be taken care of ASAP!
Who can help point me in the right direction? I am tired of general websites, I want detailed places, answers, and direction…HELP!
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