pattib

Ohhhh, how interesting! At first I was not told that there were other small tumors in my liver, and when they were “mentioned” I was told they were too small to track, so they only reported on the 3 or 4 I started with. I’m glad to hear that such vagueness is not absolutely necessary! Thanks!

The hospital did fax down about 50 pages of my records to the Mayo Clinic in Phoenix, but nothing has been done because while I had to get my primary physician to send a referral, all has stopped because an actual “authorization” has not been sent. Too bad, as the end of the month is fast approaching and I doubt anyone will look at anything now before my insurance runs out in AZ.

Meanwhile, the cancer center itself is the one supposedly collecting my records, which would include my oncologist’s notes, etc I guess. THAT is the one that seems to be taking awhile, but they will be sent to ME and then I can send them wherever. I can be patient with that for now and try to figure out where to send them where someone will look at them and hopefully recommend something other than pallative chemo. Ah well.

I’ve been taking the Xeloda since Friday night and so far don’t seem to have much reaction. I looked it up here in previous postings, but don’t see much having to do with how it actually takes effect all by itself, not mixed with anything else. If anyone has some specifics, I’d love to hear.

The “small print” that came with the pills says you could lose your hair! My doc said not, but who knows – I’m crossing my fingers! It’s NICE having some fuzz anyway!

Thanks Rae, and everyone!
I just got back from my 2nd appt at the center. They do want to go ahead with the Xeloda – 1000mg 2x/day. We just have to wait for my state’s Med Asst program to approve it. Hopefully they are not against oral chemo. We’ll see.
Next on my agenda is to call Mayo here in Arizona. Since I still have coverage until the end of the month, it seems smart to see if I can get in there before it ends. I turned in my request for records today, so they will be sent to me.

Thanks Rae for clearing up the slides question. I will make sure when I talk to Mayo that I want both Oncology and Surgical. That helps a lot!

The only good news of the day so far is that Xeloda isn’t supposed to make you lose your hair! since I have all of maybe 1/2 inch right now, I’d hate to have to start all over again!

Hi again, thank you so much for responding!
I was at the cancer center today for my CT scan results and they gave me a form to fill out to get a copy of my records. They will release them to ME and I can send them wherever I want. As for the biopsy slides, I was told that generally they are requested by some other institution on my behalf when someone wants to see them. From reading someone elses posting this doesn’t match up, but we’ll see.

I talked to Mayo Clinic in MN today and they started a file and told me how it works if I don’t have insurance to cover. Similar to other posted experience, they require a $3000 deposit before they will see you and then use that money for tests/procedures, whatever. When it is spent down, they require more upfront payment before they will continue.

Ok, I’m avoiding the CT results. One of the tumors grew
It went from 3.8×3.2 to 4.7x 3.4 cm and is in the lateral segment of the left lobe. Another in the left lobe changed sizes, but not much bigger, if at all. The one on my right lobe was 3.2×3.2 and is now 2.8×3.5, again, essentially the same.

They want to start me on the oral chemo Xeloda. The nurse told me that one of the main side effects was diarrhea, and when I told her I have that constantly for like 10 years, she said she wanted to get back ahold of my Dr and ask her about that. I have another appointment with blood tests Monday morning.

I can’t say that I’m a happy camper. I hated the wait and see stuff, but now I hate hearing that one of the adenocarcinomas has grown. Just won’t be satisfied I guess! I gave her my whole spiel about consulting someone else, finding out about surgical possibilities, referring me to someone who is more experienced in GI matters, etc and she promised to discuss all of that with my Oncologist too (My Oncologist is out of the country for 3 weeks).
So……….. maybe the nurse will do better talking with her than I did last month. Crossing fingers. I’m so glad I found you guys!

Thanks for writing Karen!
At least that gives me an idea of what might happen if I approach Mayo in MN. Fortunately the AZ Ctr will work with me and not deny service, bless their hearts, so I may be restricted to just there, and really, they are wonderful, but as I’ve been told and told, I really could use a second opinion! Oh well, I will find out tomorrow what they have to say about my CT scan last week. Praying for good news!
Hugs to everyone, this is no fun no matter what your situation!
Patti

Hi Bill,
Thanks for the reply. You BET it’s going to stop me cold from getting full care! I too am looking at the candidates closely, but no one is addressing the gaps.

Once you qualify for Disability (SSDI) you have to wait TWO YEARS to qualify for Medicare. Most people who worked as adults will make too much on SSDI to qualify for their state’s insurance programs. We’re talking about $100-200 too much PER YEAR.

Arizona didn’t FUND it’s program to let people who HAD been on their health program, but now were earning a bit too much, from paying a premium (like regular insurance, but based on income) so while the program is on the books, you can’t get it.

I actually had private insurance, finally, after years and years of not being able to afford it. Still couldn’t, as it was 1/3 of my total income, but I did it anyway and lived “small”. During the 2 years I paid for it, they kept changing the coverage until instead of no co-pay for x-rays, CT scans, etc. it was now 20% co-pay and that was on their “most coverage” program! No way can I afford the premium PLUS 20% and that’s not even mentioning the Chemo treatments!!! Oh, of course the premiums kept rising despite the reduced coverage in every category! :rolleyes:

I don’t know how I can afford a second opinion, assuming they (whomever) charges fees to review your records and if it requires travel somewhere – like Minnesota for Mayo Clinic, I’m screwed, so ya, desperate situation.

Thank God right now my mets tumors in my liver aren’t growing a lot, but how long can I count on that? I’ll know more on Thursday!
Sorry to dump so much, but I’m dealing with this RIGHT NOW trying to find a way to pay for last weeks CT scan, and my temper is short. I’ve been on the phone all day calling everyone I can think of. I’ll chill, and just do what I can by tomorrow.

You guys are amazing! It’s just great to read your notes and hear your support. Since I live alone and don’t have much in the way of family or friends here in Tucson, I get sort of sick just listening to myself!

The thing that got me wondering about my Oncologist was that from the beginning they said I had three masses, all pretty small, in my liver. Still I was told because it was mets from “someplace” else, surgery was not possible. THEN about the 4th CT scan, she says, well, you have too many tumors in all quadrants of your liver. I said “WHAT?” They’d only ever talked about the three, and how they had not grown nor shrunk. She said the others were too small to really track. That got me going. 1st, why did no one ever mention them before? 2. If they don’t track these small ones, how do they know if they are growing, shrinking or if there are more or less of them each CT scan? My trust went down.

That’s when I asked my “big sis” the lawyer, to come and hold my hand for the next appointment. I’d been 6 weeks with no Rx and was worried sick. Still we didn’t get too far, but I felt some reassurance that they were doing everything possible and really, if there was no change from the beginning, why rock the boat?

I talked to the advocate at the cancer center and told her my frustrations and how for the second time, my Oncologist said she was going to have my biopsy slides looked at again. I think it was due to the advocate’s pushing that it really happened this time! AND, now she consulted with the GI cancer specialist and he thinks it is bile duct cancer. What do you know?

All this long winded stuff is in response to is there a surgical solution. My onc says no, or did anyway. Having tumors “all over” my liver doesn’t sound too good, but then I’ve never had any symptoms of blockage or pain. I have no clue if the tumors are in places that make surgery impossible, or if the sheer numbers (if that’s true) preclude surgery. I got the idea from some of your wording that taking my tests to a SURGEON as compared to an Oncologist, might yield different answers. My clinic is an National Cancer Institute designated “comprehensive cancer center” with tons of specialists. You’d think they could consult??

Hi again, and thanks for the responses. What I don’t get, and am sort of afraid of, is if I don’t have symptoms, am not in pain, should I just continue to do this “wait and see” or is it, like I fear, just waiting for something bad to happen and then they can “deal” with that?