Newly Diagnosed
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Dear Jayne, I have not heard of this James being a major CC Hospital. A top rated Cancer Hospital does NOT mean they have expertise in treating CC. Have you seen our beautiful long list of Hopitals for treating CC? The one thing we know for sure is that no 2 CC patients seem to be alike. Some loose weight, some gain. Some have pain some never have pain. It’s just the biggest puzzle and our best tool to fight is to read, read and read. We strongly suggest 2nd and 3rd opinions as our members will attest to. You are not alone, we are all here for you. Please keep us posted as we truly care.
To PCL1029:
Do you live in Ohio? Have you had a bad experience with OSU or know someone who has? We were offered to have Ken on a clinical trial from the get-go but told to take the long weekend to read over the information sheets and then give our answer. The day the clinical trial coordinator called they informed us that the clinical trial had been cancelled because they ran out of the study drug. Honestly, after reading all the possible side effects (5 full pages of them!) I wasn’t so sure he should do it. I felt my prayers were answered when the trial was cancelled.
I’d be interested to see how many out there have participated in a clinical trial and what you learned from it. I just read about Ginger who did one toward the end and was “the sickest” her husband had ever seen her. I don’t think my husband wants to get to the end of his life like that but on the other hand will do whatever is necessary to live.
So I guess my question is do you think clinical trials are a good thing or something to avoid?
Jayne
Kris:
I would love to discuss my husband’s situation with you directly. Could you email me at jaynesmalley3893@gmail.com? Thanks for all the great information. He is on Gemcitabine and Carboplaten and so far doing pretty well. The nurse told us that the carbo will deplete his blood counts which the gem did not do at all after just one treatment. He did very well for the first three days, then yesterday and today seems wiped out. He said he’s very tired and looks it.
I told him we need to get a second opinion but we started with Ohio Health, had a terrible experience with them and decided to try OSU. This was all before the official diagnosis of CC. The James is supposed to be one of the nations top-rated cancer hospitals and in fact on this site is only one of two hospitals recognized as an “expert” in CC. My frustration is just having anyone to talk to from his team. I don’t reallly want to schedule an appointment but I think that’s the only way we can get our questions answered and spend sufficient time with a doctor. For example, I’d like to see his last MRI scan to see where the tumor is exactly. He has NO symptoms. The way this whole thing started was because of some enlarged lymph nodes in the abdomen. I’m not saying their diagnosis isn’t correct, but I’m just wondering why he’s not lost any weight, etc., etc. We are thankful, but just curious.
Jayne
Hi,
Just a caution note for you. James cancer center is famous for it clinical trials research for patients. so when they present you with clinical trial,especially Phase I or early Phase II clinical trial, think twicebefore you say yes.
get an 2nd opinion from another state like univ.Michigan for medical oncologist as well as interventional radiologist consult for possible different treatments before you making up your decision for clinical trial in James cancer center.
God bless.Jayne,
Welcome to this wonderful group of people. I am so sorry for Kens diagnosis. I was given six months and it has been two and a half years so don’t hang on those words of one year. I live in Akron, Ohio. If you want to pick my brain or chat please feel free to call me at 330-903-6868. I have had several chemos, surgeries and radiation.
Hugs,
LisaJayne and Ken:
I agree with getting another opinion also. My first surgeon wanted to operate. When they finally came back with the biopsy results, I decided a 3-4 hour train ride to NYC wasn’t too much trouble if I could go to someone with more cc experience. Thankfully I found Dr. Fong, who, while taking away my hopes for surgery, told me that I would almost certainly not have survived. So I thank God I found him.
They are coming up with new treatment options every month it seems. I was on gemcitabine and oxaliplatin for 6 or so cycles. Then I couldn’t do the oxy anymore so we gave me a break for a while. When the cancer started growing again we tried gemcitabine and Xeloda. That did not work as well on the cc mutations I have. So we tried stereotactic radiation. So far, so good after 7 months. All is calm and quiet.
I call myself the healthiest sick person I know. I have occasional back pain but otherwise I’m healthy. Except for that darned cc. I play poker, sing karaoke, line dance and pretty much don’t stop (’cause I don’t want it to catch me).
As far as life expectancy, I guess I need to die now… It was about 93% mortality 2-5 years with very little hope without surgery when I was diagnosed. Sorry but I’m not listening. The outlook has gotten much better in the 2 years I’ve been dealing with this, and I say as long as I stay alive every day is one day closer to finding the cure.
I have been told by my surgeon that I will die with this. I did not say OF THIS.
Positive attitude is very important. Very difficult, but essential.
I did not drink much milk the past 20 years, but I love my cheese and ice cream. I was never told to avoid that. I do try to limit my meats and sugars now.
I wish you all the best and I agree that this site is full of wonderful, caring people and more information than you can process!
Hugs,Hi Jayne and Ken,
Welcome to this site, but I am very sorry to hear that Ken has been diagnosed with CC. My brother-in-law is from Gahanna and he and my sister live in Delaware, Ohio. Small world, isn’t it? My daughter, Lauren, is 26 and has CC. She has been on chemo for 16 months and was told she was inoperable when diagnosed. Well, a few weeks ago she was told she now is operable and we are getting ready for her to have her first of two surgeries the end of March!! So don’t give up hope. Miracles do happen. I would not dwell on what the doctor said about how long Ken has. Nobody knows for sure. Enjoy every day and cherish time together. For Lauren, chemo has made her feel much better. For your question about dairy, Lauren doesn’t drink that much milk. Mostly on cereal. She does love cheese and ice cream though and has eaten a fair amount of that. I hope this helps answer some of your questions. Please ask away. We love talking to and meeting new people. I wish both of you all the best.
Hugs,
-PamThank you for your quick responses. Some days i feel all alone with this situation. We have four amazing adult children who are ready to be my support as soon as i let them but as their Mom all i want to do is protect them from the pain of watching their dad deal with this situation. I am sure i have totally underestimated them. I am sure the day will come that i will totally rely on them. I will let you know what new drug Ken will get. And i am so thankful for this website.
Jayne
Hi Jayne (and Ken),
Welcome to this site that is made up of smart, warm, and caring people, both caregivers and those with this disease. Sorry you had reason to find us and I am sorry that Ken and you are going through so much.
I had gemcitabine chemo for 6 months after my surgery and while it wasn’t a picnic, it was not as bad as some others. I am sure others will add their experiences soon to this thread.
I agree with Gavin and Lainy about both second opinions and taking each day one at a time. If Ken is feeling good, do something fun. Lay low on the days that he doesn’t. And I got 2nd and 3rd opinions at different points in my treatment which mostly confirmed what I’d been told, but put my mind at ease that I was doing the right thing.
There are so many caring people on this site who will embrace you and answer any of your questions.
I have no experience with milk as I am lactose intolerant
Take care.
Dear Jayne & Ken, welcome to our remarkable family but sorry you had to find us. The best advise I can give you is to try very hard to take each day at a time. As Gavin said, we do not listen to statistics! tHEY DO NOT INCLUDE OUR SUPER HEROS. The next thing is that we are big believers in 2nd and 3rd opinions! Make sure that where ever Ken is being treated, that place has good CC experience. As for dairy, my husband was not able to drink milk before he was diagnosed so don’t think that has much to do with CC, at least never heard that before. Jayne, listen to your gut! If you feel another opinion is needed…go for it! We are all here for you and please keep us updated.
Hi Jayne,
Welcome to the site. Sorry that you had to find us all and I am sorry to hear about your husband Ken. But, I am glad that you have joined us all here as I know that you will get tons of support and help from everyone here. And please, feel free to ask any and all questions that you have and we will do our best to help in answering them. There are no stupid questions! We can’t promise to have all the answers, but we’ll do our best to help.
Thanks for sharing Ken’s story with us all. I can’t share any personal chemo experiences as my dad never had that, but I know others will chip in and share their experiences with you. Please let us know the name of the other chemo that Ken will have when you know what it is. There are tons of posts on the site regarding members experiences with chemo.
As to life expectancy with or without chemo. Please try and not focus too much on stats, we don’t really know what will happen do we. We have plenty of members that have lived far longer than they were initially told by a doctor. Personally with my dad, I preferred to focus on the now and not think too far ahead.
My dad couldn’t have surgery either due to his CC being too advanced before it was diagnosed and unfortunately that is far too common with this cancer. His tumour was also too close to the portal artery which ruled out surgery for him. But, there are instances of members being originally told no to surgery at first then being able to have it later after having say chemo etc that has proved successful.
Ok, have braced myself for your last question! As to the milk and dairy, no. My dad didn’t drink a lot of milk or eat lots of dairy before his diagnosis. He did drink milk and eat dairy, but not lots and lots of it. That is not something that I have heard of before, but hopefully others will also chime in with their thoughts on this issue.
Keep coming back here Jayne, and please know that you are not alone here. We are with you and know what you are going through right now, and we care.
My best wishes to you and Ken,
Gavin
Hi! My name is Jayne and my husband, Ken (57) was diagnosed with CC in January 2013. This process began the week of Thanksgiving 2012 with a possible diagnosis of Lymphoma. After two endoscopic biopsies of a gastric lymph node as well as one on the periportal, the results indicated that lyphoma was not the proper diagnosis and further tests/procedures needed to occur to find the original source of the cancer. What we did know at that point was that it was already in an advanced stage although he was not having any symptoms. A third endoscopic biopsy was performed on the pancreas (no tumors in the pancreas), a colonoscopy (negative), and another MRI of the abdomen (liver, kidneys, bladder), his case was shared with the Pathology Board at The Ohio State University, The James Cancer Hospital. Finally, we received the diagnosis of CC Stage 4 and was referred to Dr. Wu, oncologist at The James.
Ken has had his first chemo treatment two weeks ago and tolerated it very well. They were only able to give him gemcitabine because the other drug (I believe is cisplaten) causes tinitis which he already has. They have requested insurance approval of something else (not sure what yet) and we are hoping it will be approved and available for his second chemo treatment this Tuesday (2/12).
I have so many questions in my head which I try to get down on paper. I did ask the doctor, the first time we met, what life expectancy is for this cancer and she hesitantly said average is 1 year. At that point, my brain shut down and I couldn’t ask another question. My first question is, is 1 year with chemo or without?
My husband could not have surgery first due to the lymph node involvement. My second question is, can he ever have surgery? I’ve read your discussion boards and many people have commented that the only way to get a “cure” is to have surgery.
I am thankful I found this website and hope that in the days ahead I can get information from all of you out there who are also dealing with this horrible disease. I have one really stupid question for anyone or everyone dealing with this: (Brace yourself) Did any of you drink a lot of milk plus eat a lot of dairy prior to getting this diagnosis?
Living one day at a time!
Jayne
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