Topic: our experience at MD Anderson cancer center in Houson (from Seattle)

Just to re cap, my husband Rick has cc, metal stent in March when diagnosed which brought em back to the living ! He also has Bob, the 15 cm tumor on the left lobe of the liver with a couple buddies now, lesions. Its been a big no on every therapy and procedure, too big for ressection, tace, embolization etc.  He did chemo but the oxy gave him such bad neuropathy.  He chose quality. We have been cramming alot of life in the last few months.  I can see him slipping here and there, but glad he still feels good. The tumor is so big it is hard to get stats on how others have done. .....anyway,
We went last week to the clinic, what a huge place. You could put U of Wa in the corner and loose it fast. Our choices were only clinical trials, (we figured that) one with combined chemo, and the other Herceptin (showing great promise with breast cancer but little with much else, and very hard on the heart.) They also said they would only treat there,(since it is their trial) making it hard to fly from Seattle each 3 week treatment for the Herceptin. Since nothing sounds promising, we did fly home as soon as all the appointments were done. HIs case was presented at the tumor board that evening. The doctor never did call when the board was finished, the nurse called 2 days later (today) so we are trying to consult over the phone with the doctor.
We are waiting to find out how the CTs look now, what changes Bob has made in the last 2 months, if any.
The doctor here in Tacoma wants Rick to try Tarceva, wow spendy stuff .  You must have to work your way up to the good stuff which is expensive and the insurance companys of course frown on that ! In a bit of research yesturday I found Tarceva to be a fairly good chemo on the body , rashes being the cheif complaint, working well on some and not at all on others. My findings have been this is such a rare cancer they do appy therapies from other adenocarcinomas (glandular) such as pancreatic because they are common in cellular structure.
It is hard for a layman to sort out all the clinical terminology but it helps to know all we can when we have to fight so hard and there are so many existing opinions. Sharing is great, please let me know any tidbit of info if you have any input. Thanks  Robyn

Re: our experience at MD Anderson cancer center in Houson (from Seattle)

MD Anderson called, high pressure for Rick to guinnea pig for the clinical trials, he said it was like a car salesman. He asked about the CT and the doc said the tumor had grown, but he did not know how much (red flag there ) IF he knew it grew why doesnt he know how much, or was it he did not want to discuss on the phone....scarey. They want him to participate with Herceptin, but in researching, Rick has decided it is not what he wants. It has been great with breast cancer....but not with liver. No insurance coverage, and flying every 3 weeks, plus they have  a clause in the paperwork that states if you have problems, even if they are the fault of the hospital, that the hospital will treat you but you will be responsible for the costs.  Wow, that opens alot of doors, some called medical bankruptcy. We are waiting for the scans got get to Tacoma General, and then have a consult with his oncologist and go from there. My main fear, just how fast is Bob growing  ...and of course in what direction.  I wish i could take a day off from Fear.  and I bet so does hub.

Re: our experience at MD Anderson cancer center in Houson (from Seattle)

Dont you just want to kick the medical community in the groin sometimes! Hang in there.  I am sending you BIG hugs. Fear sometimes is so consuming...we have all been there. I hope your scans provide your Tacoma dr some insight into future treatment that agrees with your husband.

KRis

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: our experience at MD Anderson cancer center in Houson (from Seattle)

We did quite a bit of flying around and consulting out of town a year ago...all seems so fear-driven now, but it seemed necessary at the time to find out what was available.  As I mentioned in other post, MD Anderson people were very helpful in reviewing his records from afar...but we ended up going to Seattle Cancer Care Alliance and they finally had a plan for him to start a chemo, and then a backup plan for another kind, and then he ended up having surgery anyway.  What seems true for me now is that the consulting and learning phase with places out of town is worith it because it gives you a knowledge base, but that usually the treatment ends up being close to home and that is a good thing.  Also the more close to home cancer care groups can still follow advising of the big ones out of state (Anderson, Mayo, etc.)  this is all just general info I gleaned and conclusions I came to from our experience of 1996.  I wish you well...it is such a stressful time right after diagnosis.