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I just got back to work from taking mom to meet with a gastroenterologist. He was much much (cannot say “much” enough) lighter in tone than the ominess tone shared by my families general practicioner. He checked mom out, asked questions about her medical history, and didn’t treat her like she was condemned. He thinks that the appointment at Sloan is good for a second opinion, I just have to hope that she changes her mind about going there. She isn’t keen on traveling there even though it is only two hours away. My dad is encouraging her to stay local in New Haven. I’m keeping the appointment for now just in case. She hasn’t even seen an oncologist yet. They’re going to do a rubbing biopsy tomorrow when we check her into the hospital for her stent. I’m just so thankful for today.
kelly-I post on here because I am the face “hope”. I was fine on July 30,2008 (just a little itchy) and the next day July 31,2008 I was told I had 6-8 months to live!! My saving grace was being diagnosed by a doctor who knew what he saw ,knew about clinical trial, and knew about one of the most expierenced doctoors for this cancer. It was literally minutes from the word cancer to what we do next. my expierence is very rare. I know if my GP doctor had not been on vacation I would have a very different out come. Kelly you will probably be overwhelmed for a while but there is HOPE out there and this is your first palce to find it .Lots of prayers-Cathy
Kelly, so sorry, I am very familiar with the initial devestation you are feeling. I remember it just felt sureal at the time, like I just couldnt believe this “thing” was growing inside my dad. At the time my dad even felt ok, but the jaundice was just making it so much more difficult for him and all of us. I have to admit that eliminating his yellow skin and his eye whites that turned yellow was a complete relief. Ask his physician if he knows of a gastrointerologist in the area. That is the Dr. who placed the stent in my dad. We had that procedure done within a few days of diagnosis. So sorry Kelly. Take care of yourself too!
xoxo
BarbaraKelly….why don’t youi call your Mom’s physician. Is your Mom really uncomfortable presently? If so, then she would need to be seen. If not then you could wait until Tuesday. Has your appointment been made for a consultation only or, will admittance forms have to be signed.
Best wishes,
MarionKelly, you certainly have your plate full. How can you not take care of your parents? I helped take care of my mom for six years after a significant stroke and my dad for six months after his cc diagnosis. You just do it! But, you need to take care of yourself too! I think you received a good appointment turn around time for SK. What is her biliruben level? Have they talked about a plastic or metal stent to relieve her jaundice? A digestive specialist can take care of doing that procedure. A cure for this cancer is ultimately surgery. Some people live for a long time with no surgery. For some, this cancer is slow
growing. Your mom is young and should be able to battle this. I wish your mom the best. Take care of yourselves!Thank you guys so much for being here. I really don’t even have words for how grateful I am to you and to my friends and my family.
This wasnt even an oncologist. This was my family’s general practicioner that did the cat scan on Friday and made the discovery. I had to go to him today because recently my BP has gone up and he wants to make sure it’s not from anything involving my kidneys. While I was leaving he came over to talk to me. He also said I shouldn’t be taking care of my father. (Mom takes care of him, he has athsma, emphysema/COPD etc) because I have my own life to live. My father is in poor health and almost 70. He can’t even operate the fax machine when I give him a number to fax her tests to, let alone begin to research facilities and doctors. My mother is the love of his life and I just can’t sit idley by and do nothing. I’ve been trying all day to get her in to see an oncologist familiar with this. The best I’ve gotten so far is an appointment next Tuesday at Sloan Kettering. But I’m trying desperately to find someone here (Connecticut) who is familiar so we can take care of her jaundice. But for this person to say “no hope” without her having even seen another person knocked the wind out of me. I apologize that this sounds raving, I’d just like for someone with more knowledge to see her.
Yes, Kelly we have heard this from quite a few doctors. You see, many don’t know enough about CC to know there is always hope. I say we like to remain realistically optimistic. Attitude plays a huge part in any illness.
Kelly….my heart goes out to you. Our precious Kris once said: We stay hopeful and realistic.
I don’t know which cancer center you are speaking of however, you might also want to consider gathering an opinion from one of the other well known cancer institutions. Hang in there. And, stay hopeful.
All my best wishes,
MarionI went to the doctor today for my own renal sonogram (blood pressure issue) and while there my doctor asked me whether the CC of Penn had called. I said no, that I was looking into other options as well. He said “why Kelly, CC of Pennsylvania is where people go when there is no hope” I understand the severity of the diagnosis, which, by the way, is still from just a cat scan, and I understand there is no cure, but there has to always be hope. I just can accept that last Sunday my mother was seemingly fine and as of Friday there is no hope for her. I’ve been on the phone all day today trying to find doctors to meet with her. It hasn’t been an easy day and I know things stand to get much harder from here but to have him look at me and say “no hope” was the absolute worst thing I’ve ever heard in my life. I know denial is one of the stages, but I just cannot accept “no hope” until I try everything I can for her. Has anyone else had this happen and had the doctor be a bit premature in his verbage?
Kelly….although, this cancer is considered to be rare the physicians at Sloan see about 200 cases per year. Additionally, the attached link established by our members reveals numerous other CC treating physicians and centers.
http://cholangiocarcinoma.org/search.htm?cx=009850667938309428387%3Adc0sfkrlh9u&cof=FORID%3A11&q=physcian%2Ftreatment+centers&sa.x=23&sa.y=9#1100
Keep looking and continue to educate yourself.
All my best wishes,
MarionHi Kelly-like everyone else so sorry you had to find us. This site will be your one sane place because everyone here will understand the craziness you are about to expierence. You can post anything here because someone will have seen done or heard of it.
I am a cc survivor and was completely blindsided when I was diagnosed, I was just soooo itchy. I was very lucky because I was diagnosed by a doctor who knew what he saw and knew my main hope was a transplant. I was immediately put in the care of Dr.William Chapman at Barnes-Jewish Hospital in St.Louis MO. He was involved in developing the Mayo-Clinics clinical trial for cc .You can read my story by googling thetelegraph.com and typing in christmas miracle.
There is hope, so take a deep breath, lots of notes and ask any question you can!! Lots of prayers-CathyHi Kelly,
Welcome to the site. Sorry that you had to find us all and I’m sorry to hear about your mum. I know what you mean when you say that you were stunned to hear of your mums diagnosis, I felt the same when I heard my dads diagnosis. He was quite young as well, 64 at diagnosis, and we were told that his CC was inoperable. To say that this came totally out of the blue would be an understatement as my dad was quite healthy at the time and was in good health. He never smoked, drank very little and this was a total shock to us at the time, so I can so relate to what you went through when you were told about your mum.
I’m glad that you have found as all as you will get a load of support and help from all of us here. And please, feel free to ask a load of questions if you have them and we will all do what we can to help in answering them.
My dad too had the Ensure drinks and they worked well for him after he came home from the hospital. Another drink/supplement that may be of use to your mum is Skandishake. My mum who has COPD and is very underweight has been using these for quite some time and they have helped her put on some weight. Please keep coming back here and let us know how your mum is doing.
My best wishes to you and your mum,
Gavin
Thank you
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