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Second opinion from Emory

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

So as some of you know I decided to get a second opinion at Emory's Winchip Cancer Center in Ga. The Oncologist is specialized in GI Cancers. He basically said the same thing my Dr. said. I am not operable, that the liver tumors are too wide spread, and thinks I should stay on Folfox until it stops working. He added that that 50% of people can stay on Folfox or any given regimen for around 9 months before it stops working. He also said that 50% of the people on Folfox could get great results for 2-3 years before it stops working. So pretty much going to be on chemo for the rest of my life!! The Onc. pointed out that I have had great response so far and that i am doing good. I asked about my back pain and liver right side/and left side pain. He said the back pain is unrelated to the Cancer but the pain under my ribs is the cancer. Dr. El'Reyes said that I could have inflammation without it spreading.(Cat scan shows it being stable) If the liver starts to not respond down the road he mentioned having the chemo emolization. Both of the Drs. kind of act like the cancer is not going away, that it just can be kept at bay for as long as I can tolerate chemo. But if I am doing well and it is shrinking, why can't it continue to do so and be resectable at some stage? Drs. just make me crazy!! I don't know what to think, he also said about 2-3 years for this cancer but not to rule out that I am still on first line chemo and could have many other options down the road, well why the hell do you tell me 2-3 years!!!!! I am so frustrated, but have decided to stay with my Onc. since he is saying pretty much the same thing, and I won't have to drive through Atlanta's traffic to get there. Let me know what ya'll think and if there is anyone that was the same as me, and proved them wrong! God Bless, Patti

I forgot to add that my Onc. said that my belly cancer in the Omentum had completely resolved but the Emory Dr. said it was still in the Omentum if you biopsied that area you would still see cancer cells. But it would not show up on the scans. This is also the reason the Emory Dr. said they would not operate or do RFA because it is still outside of the liver.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

Have the same problem as you girlfriend, inoperable mets to the liver, I have a feeling if I go to get a 2nd opinion, they'd tell me the same thing too. My onc wants me off the Ironetecan to "make it better for me" since I only done 4 chemos in a row without getting hospitalized, but surgery or pump was not an option for me. She told me if it didn't stabilize without the Ironetecan, she wanted to try other cocktails. But, I believe down deep inside, nothing will help.

Hugsss!
~Donna

mom_2_3
Posts: 965
Joined: Nov 2008

Don't let your thoughts about "I have a feeling if I go to get a 2nd opinion, they'd tell me the same thing too" get in the way of getting that second opinion from MSK. PLEASE!! And you need to believe that there are other options out there for you and go after those options aggressively. When I was first diagnosed my sister showed me a study that showed that people with cancer had better outcomes when traveling to treatments greater than 10 miles from their homes. The reason postulated is that people that leave their comfort zone are more likely to find aggressive treatments and will do better.

What do you mean by your oncologist saying that "pump was not an option for me?"

Amy

mom_2_3
Posts: 965
Joined: Nov 2008

I know I probably sound like a broken record but see if you can't get yourself up to MSK in NYC and get an opinion from the famous oncologist there regarding HAI therapy. Check out this link: http://theoncologist.alphamedpress.org/cgi/content/full/12/7/825. While it is a study published in 2007 the oncologist has recently (I think this past May) published an additional paper discussing the success of using the HAI therapy to get individuals from unresectable liver mets to resectable liver mets. It is a great therapy and there are no side effects from receiving the chemo in this manner. This oncologist has studies where the participants (Stage IV) are 15 years out. Not too many oncologists have had the same kind of success. I have said it before but I have met people in the waiting area (the whole floor is basically colon cancer) who have had the HAI therapy in the past and are still NED (after years and years).

I don't know if you have the ability to get up here for an opinion but if there is anything I can do to help you out I would do so gladly. I helped another woman I met online (from Texas) and the oncologist just presented her to the liver surgeon for possible resection (when she was told originally she would not be resectable).

Do you have the CT scan report? I had mets in 3 different parts of the liver and all were resected during my surgery. The first opinion I received from an oncologist was that I was not resectable. That's when I went to MSK. It is very likely that the mets will continue to respond to FOLFOX for a period of time, however, it is critical to time the surgery to the chemo treatments for the optimal surgery. Also, opinions from an oncologist can differ from a surgical oncologist. A liver surgeon knows what can and can't be done. Was your second opinion from an oncologist (blood) or surgical oncologist (specializing in liver surgery)?

Please please please look into this for you and your family.

Amy

WinneyPooh's picture
WinneyPooh
Posts: 318
Joined: Jul 2009

Pattie, i am sorry the emory docs confrmed your doc's report, but i am sure your strong will, is the thing that will keep you going, medicine is only 1/2 the cure as most people here will say, I would drastically change your diet, consider consulting a dietitian or alternative medicine source to follow in conjuction with the chemo, good nutrition will make you feel better, I myself have been changing my diet, ( i am really trying to cut out the junk, increase the veggies. ). I will be on this journey with you, .
Like i told you before my grandmother who had colon cancer which spread to almost evrypart of her body lived to be 70 and she was a fighter and doctors were telling her she only had a few years.

Pattie, stay strong and draw strengh from your family and friends, live everyday to the fullest, do special things and do what you did before the cancer,
My new montra, taken from playschool and modified by me is how i handle each day.
LIVE, LAUGH, GROW
love you,
Winnie

kristasplace's picture
kristasplace
Posts: 956
Joined: Oct 2007

I'm so sorry about the news. Well, old news can still be bad news. I don't like the fact that that doctor put a timeline on you. It pisses me off when they do that. All they have are statistics, and you're NOT a statistic.

I know the doctors don't like it when we take certain supplements and antioxidants while on chemo, but if the chemo isn't working, why not take them? I know chemo is working now, but you have options after chemo doesn't work any more. Some cancer therapies incorporate diet and chemo. Have you looked into the Cancer Treatment Centers? I heard they do this, but i don't really know their success rates.

Hang in there and know we're all pulling for you!

Hugs,
Krista

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

Patti, I'm just heartbroken over this report. I've read it over and over since you've posted, and I do see SOME hope in the reports from the doctors. If Folfox can work up to 3 years for 50% of the people .... and then another chemo.... maybe in a couple of years another treatment will become available. Please don't give up hope.

I pray for you every day Patti, along with Donna, Lisa, the boys, and many others here.
Gosh, I wish I knew what to say...

Diane

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Please do not give up hope! If one doctor says it is inoperable, even if confirmed by a second, keep searching. As I have posted, my sister was dx 03/09 w/ mets to liver, ovaries and peritoneum. She did 3 months Erbitux and 5FU and was a candidate for liver resection. She went off the chemo and it spread to her lymph so no surgery. She has since gotten 4 other opinions, one said search for the surgeon that is willing to operate. She may have actually found that person at Mt. Sinai hospital. She is currently on Avastin with 5FU and it seems to be working. If after this round it has shrunk enough, she just may be a candidate for resection. You need to be your own advocate. Happy to give you names if you need them. There is one liver specialist at Stanford that can take up to 90% of the liver; he only does liver resection.
Shame on that doctor for giving you a timeline. You are both deeply in my thoughts and prayers. I hate this disease!
Marie

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