October 3, 2014 at 12:08 am #84903januaryMember
I’m not sure how I’ve missed your postings in the past, but my daughter was diagnosed in January 2013 when she was 29 years old. She had a resection and chemo at Sloan. Her oncologist is Dr. Eileen O’Reilly and I cannot recommend her more highly. She is not only brilliant but caring and kind beyond all description.
I see you live in Philadelphia. A few weeks ago we worked at a golf tournament to raise money for a foundation contributing to cholangiocarcinoma research at Johns Hopkins. A doctor came who is conducting a clinical trial for recurrent liver tumors. His name is Daniel Cosgrove and he is at the Sidney Kimmel Cancer Center. He was very impressive and committed to finding answers.
My thoughts are with you, your husband and family.
JanuaryOctober 2, 2014 at 4:24 am #84902marionsModerator
jess….It is nice to hear for your physician to support the decision for additional opinions. I also located some of the postings related to the Hepatic Arterial Infusion pump:
the clinical trial you had eluded to:
Hernias unfortunately, are a byproduct of hepatobiliary surgeries, but can be corrected. In fact, our Lisa just recently corrected this unwanted problem. So, with time, you too will be able to have corrective surgery.
In the meantime, tons of good wishes are heading your way for your upcoming visit with the John Hopkins team. Please keep us posted – we care and we are in this together.
MarionOctober 1, 2014 at 10:58 pm #84901lainySpectator
Dear Jess, sorry that you have a new spot but the good news is that it is small, that your ONC is all for other opinions, and that you have picked some of the top places to get those opinions from. My husband had a Whipple years ago and developed hernias along the incision line as well. Honestly it looked like golf balls under his skin. They chose to leave them alone as they said the hernias won’t hurt anything and they wanted to concentrate just on the CC. Much good luck on all your upcoming visits and we will anxiously await your new reports! Best of everything to you.October 1, 2014 at 10:29 pm #84900jessroseSpectator
Thanks for the kind messages. I saw my oncologist at Penn today. He said that while the new tumors were discouraging, the fact that they are still just in my liver is very good. He still wants to be very aggressive and is glad that I’m going for other opinions and will work with and support whatever I decide. He said that I may be a good candidate for HAI, which apparently they are quite good at at MSK. I guess that they are doing some clinical trials with it. However I’m still technically considered unknown primary (I have a different diagnosis listed on every single scan, it’s just silly), so I don’t know how that will work. He recommended a colleague there. I am also scheduled to see the multidisciplinary liver tumor committee at Johns Hopkins in a couple of weeks. I’m so lucky to live close to so many excellent hospitals.
I do have a hernia along the incision, which stinks. It’s small though. I’m going to talk to the surgeon about it next week and get his thoughts about how we should move forward too.
I’m feeling more positive than I was on Monday. I like that all these very smart people will be working together to help me. I’m still feeling great. I’m back at work this afternoon and I think I’m going to go to the gym tonight.
Take care all! I’ll keep you posted!
JessSeptember 30, 2014 at 8:19 pm #84899gavinModerator
Sorry to hear your news about the latest ct result of yours. I agree that a fresh set of eyes on everything can’t do any harm here and I wish you good luck on getting something arranged for this, Hopefully the new eyes will come up with a new plan to get you back on the road to stomping all over these little buggers! We are here for you too so please let us know how you get on with this.
My best wishes to you,
GavinSeptember 29, 2014 at 6:07 pm #84898marionsModerator
Jess…Perhaps this latest “bugger” can be radiated. A big part of Percy’s legacy within this community is what he has left for us. The below link offers a wealth of information:
Also, our Medical Advisory Committee is comprised of numerous specialist, hence you might want to take a look at the below:
Hoping for others to share their thoughts with you as well.
MarionSeptember 29, 2014 at 11:24 am #10592jessroseSpectator
I received my CT scan results via email this morning. Unfortunately they found at least one more spot. It is only a 1 cm, but it is adjacent to the hepatic vein. There may be another spot, but they weren’t sure. It’s less than 1cm and looks like it could be fatty tissue. The good news is that it does not appear to have spread elsewhere. This is my second recurrence. These little buggers just keep popping up.
I have been treated at U of Penn so far. I have had two resections (last one in February) and have been on Xeloda since. My first stint with chemo was gemcitabine, irrinotecan and panitumumab (which was downright awful). I really feel great right now and have had very few side effects from the Xeloda. I had a clean scan in June. I know my situation could be much much worse, but I’m very bummed.
I don’t see my oncologist until Wednesday so I don’t know what he is going to want to do. They discussed RFA with me for my last recurrence, but they couldn’t do it because of the location of the tumor. I don’t know if it would work for me here either considering the proximity of the tumor to the hepatic vein. We also talked about radiation, but I didn’t really like the radiation oncologist I met. On top of all of this, I suspect that I have an incision hernia from my last resection.
I am at a point where I want a fresh set of eyes on this. I’m going to look for an oncologist at Sloan Kettering, but I’m not sure who to pick. Does anyone have any thoughts on this?
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