New to Board, to CC, that’s what they think I have now…

Hi Sophie! Where are you going for care? I’m impressed that they are planning on an embolization! Do you have masses all over your liver, or localized?

I have quite a few updates:

1. The surgeon in CA who saw my records said that he’d want me to have a triphasic CT scan. Still don’t know how that might be accomplished.

2. The surgeon at Pittsburg UPMC Liver Cancer Ctr. looked at my CT’s and records. They said to continue with chemo unless things started to grow again (I guess they didn’t get that they have, a little). Anyway, they said that if they grow, UPMC would recommend a chemo embolization. They would be willing to do that if my bilirubin stays below 3. ( I currently have no problems with any blood counts). They do not see me as a candidate for resection. (kind of hard to take, but I’m not giving up yet)

3. I spoke with Liz at T-gen who told me that their head guy used to be the director of the cancer center that I go to. They hand picked Dr. Dragovich as his successor here and felt funny because they think so highly of him. I told her that I do not see Dr. Dragovich, never heard of him! Turns out he’s the GI cancer specialist and he does a lot of work with my type of cancer. I’m working now on getting transferred to him.

4. They did cut me off medicaid, and besides that, turned down my request for a 2nd opinion at Mayo in Phoenix on the last day of my coverage! I’ve spent all month going nuts about this – writing letters to my congresspeople, to the paper, etc. making a lot of stink. One AZ senator responded and was very helpful in that she sent my letter to our medicaid office and told them to “do something”. AHCCCS (AZ’s medicaid) actually called me to help with their “spend down” program which really sucks (spend every cent of your income on your medical care (and/or collect the bills) until you get down to $367 and they will pay the rest of your medical bills for 3-5 months then do it all over again. But as it was my only choice, I was working on that and hearing that they have a few “short cuts”. Finding out that one two-week series of Xeloda could cost like $3300. at full price meant that I’d collect enough medical debt relatively fast.

5. Meanwhile everyone wanted cash for blood tests and Dr. appts. etc so there went my income tax refund!

6. NOW FOR THE GOOD NEWS! Somehow, accidentally, someone at the state office for AHCCCS saw my application for a program waiting list that is no longer funded by the state (and not likely to be given the economic crunch, but they were accepting names for a list). He called me and said that I qualify for the “Freedom to Work” program which is partially funded/supported by Social Security and partially by a non-profit (the one this guy works for for AZ people).

He told me that I can get back on Medicaid Immediately because I am officially disabled – get SSDI and I am WORKING!! They don’t care how much I make, to a point, and all I had to do was fax over a pay stub. Totally unbelieveable! I called him again today to see if he got the award letter from Social Security Disability and my faxed pay-stub and he said it’s all a go and he’d process it today and send me a letter and I should be back on the same health plan I was on before I got disability within a few days.

NO ONE apparently knows about this program! Not even the advocate at the cancer center who helps everyone with financial probs, nor anyone at DES. But you can look it up online, it’s a real program. My guess is that since these work/training type programs were set up for the “physically” disabled – as in handicapped, wheel chairs, etc., that when you are disabled due to a terminal cancer, people just don’t make the connection – or they assume you don’t want to and/or can’t work at all.

Because of the fear of possibly losing my SSDI I called Social Security to triple check. Nope, you won’t lose SSDI status until you earn over $760 for 9 months, and THEN they have a host of other things to keep it going. My big fear was that fine, I can work right now, I’m not bedridden, etc. but who knows if or when that could change. If it does, then I would be dependent on the disability check. Scary, but they say no worries!

The other point is that if I am still kicking in 2 years, I’ll finally qualify for medicare, so even if this program only works for a while, I’ll have other options later. My advocate was blown away. She wants this guys contact info! She says she has lots of cancer pts who are on disability and she’ll twist arms to get them some kind of employment if that’s what it takes!

Anyway, it’s been a busy month! I too credit this board for helping me keep at it and keep my spirits up and helping me learn about this disease. ALL of which are vital if you are going to get any sort of care these days!

Big Hugs to everyone, and I’ll keep you posted on what happens! Next battle is to protest the “no second opinion decision”. Are they nuts??
Patti

Hi Sophie,
Great to hear from you! No, I’d never heard of portal vein embolization – just spent 1/2 hr on the internet to find out what it is! I’ve been very frustrated because no one is yet talking to me about what OTHER options I might have since they diagnosed bile duct cancer instead of unknow primary.
Last week I left a list of questions for my Oncologist (I met with her nurse). My next appt is with the Doc and hopefully she’ll have some answers.
Meantime, I’m sending my records to a couple of surgeons. I just found out that there is one at my clinic! So tomorrow I will follow up on that.

I’m thrilled to hear about your progress – please keep us posted on how it goes! What kind of chem will you be getting?
Patti

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!

I have never heard of a triphasic scan, what is that?
They’ve started me on Xeloda 4000mg/day and finally got it approved for two weeks only. So far so good.
My insurance runs out next week so we’ll see what happens.
As to referrals, I’m waiting on getting my records from the cancer center. They said they are still pulling them together as of last week, but it shouldn’t be long now. I’m just feeling a bit defeated today.
Thanks for your response!