Re: New to Board, to CC, that's what they think I have now...

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 sad
It went from 3.8x3.2 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 3.2x3.2 and is now 2.8x3.5, 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! smile 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!

Re: New to Board, to CC, that's what they think I have now...

Patti.... The bottom line in my opinion is you need a GI surgeons opinion on wheter your tumors are resectable.  Resection is always the best possible route to take for the best long term prognosis. Wish you the best as you continue to rattle cages.
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: New to Board, to CC, that's what they think I have now...

Hi Patti,

I'm sorry to hear about your CT results, but don't give up hope.  I agree with Jeff - the surgical opinion should come from a GI surgeon with a lot of cc experience.

I wanted to clarify my earlier post about the biopsy slides.  I dont think they would have released the slides into our possession.  I think there were 2 reasons the slides weren't sent.  My Dad's primary doc requestd a surgical appointment, not an oncology appointment.  The surgeon didn't need the slides, so Mayo did not request them.   Second, the primary doc and the GI who did they biopsy were at two different facilities in different towns.  I'm sure that didn't help.

Once you reach the point of having a second opinon lined up, that would be the time to make sure the slides are requested and sent.

At that point in the process, we did not understand the difference between surgical and oncology appointments.  If I had known, I would have requested both before we arrived at Mayo.  But we didn't ask for the oncology appt. until our meeting with Dr. Gores, the surgeon.  At that point, it was too late for slides to be requested and sent, without us staying another few days in MN, which my Dad did not want to do.

Patti, keep pushing for the second opinion - the squeaky wheel gets the grease.  Perhaps surgeons associated with university teaching/research hospital would have different payment options than Mayo for those without insurance.  It might be something to look into.

Best of luck, you are in my prayers.


Re: New to Board, to CC, that's what they think I have now...

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!

Re: New to Board, to CC, that's what they think I have now...

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!

31 (edited by marions Mon, 24 Mar 2008 12:16:49)

Re: New to Board, to CC, that's what they think I have now...

Tumors smaller than 2 cm in size can be detected on a triphasic CT scan.  It is also called: 3-D Scan.  In our case, all of the prospective surgeons were requesting this particular scan in order to evaluate the condition, more accurately.
We experienced similar delays when requesting our medical records although, one week more or less is to be expected nevertheless, don


Re: New to Board, to CC, that's what they think I have now...

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! smile

Re: New to Board, to CC, that's what they think I have now...

I took Xeloda for seven weeks with no side effects at all. I don't think people normally lose hair with Xeloda-- I certainly didn't.

The best of luck to you!

Peace, hope, and healing to all!

Re: New to Board, to CC, that's what they think I have now...

Hi Patti

I am the only one I have heard of who has had a reaction to Xeloda.  I started taking it on the Wednesday and by Saturday I was in Hospital with a severe angina attack.  Now I had absolutely no history of heart problems and of course, when I was previously in hospital for the 2 resections I was hooked up to all sorts of monitors, again with no sign of a problem.  Anyway, I ended up having angioplasty and stenting.  Amongst the paragraphs of possible side effects it does say that in rare cases taking Xeloda can lead to a heart attack.  I guess I was just very lucky??

All the best


Re: New to Board, to CC, that's what they think I have now...

   You can apply to Roche Pharmaceuticals to get your Xeloda free if you are unable to get it through your medical assistance. Ask the Social Worker at your hospital for details. They gave us four months worth absolutely free since we met their financial requirements. My husband actually only took it 25 days when he was receiving radiation. I gave the extra pills to my sister in law since her insurance would not cover hers. It saved her thousands of dollars. Best wishes. Mary

36 (edited by marions Tue, 25 Mar 2008 16:22:42)

Re: New to Board, to CC, that's what they think I have now...

I am following Mary's suggestion.  In addition too, the oncologists office might be helpful in requesting on your behalf "compassionate use".  As far as I know some, if not all pharmaceutical companies require a household income of less then $75.000 per year in order to qualify for this.
Wishing for the best,


Re: New to Board, to CC, that's what they think I have now...

Hi again,
Yes, thanks for the suggestions. I called the advocate at the cancer center today and told her the pharmaceutical company, etc. They have a person that sends off for that sort of thing I guess. No worries about me qualifying financially!

I just got the final word that there will be no respite from cutting off my insurance.

Mayo is still waiting for an authorization and I found out this morning that it was held up because my primary had sent it on an "old" form. Supposedly they will all expedite things today/tomorrow? and I'm praying that Mayo will look at my stuff before the 31st and at least decide if they WANT to look at my stuff. We'll see.
I sure appreciate being able to talk to people here!

Re: New to Board, to CC, that's what they think I have now...

My wife has CUP/biliary. showed at last PET I have searched the country for the best doctors and trials and I have some info to share. Even though we have an HMO, we got unlimited treatments out of state at a great doc. email me 4 more info read your coverage handbook about appeals.
I looked at the Pima health care description and in the event of serious illness you are entitled to an expedited review.  In Mass,  we got approved in less than a week.   Your PCP should be able to fight for you.
If this is the Arizona version of Medicaid, it may be possible for your congressman to put on some pressure.  I don't understand how they can cancel you.  Was the April 1 just the end of the appeal date?

April 5, 2008 12:41 PM

Murray said...

Since you live in AZ, contact Liz Campbell of Dr. Daniel Von Hoff's office. He is one of the best in the country and evals for trials and the trial itself may be helpful.  Clinical trials are no cost and even if no trial for bile duct is available, you might be able to get the meds on a compassionate use basis (for free) since the cancers are so similar.

Keep up the fight


Re: New to Board, to CC, that's what they think I have now...

Hello Patti, this sounds like the exact scenario of my condition.  For weeks the doctors scratched their heads and said they were stunned because I had a metastasized liver cancer, but they couldn't find the primary.  They now suspect it's cholangiocarcinoma.  I have just had a portal vein embolization, and I will be starting chemotherapy next week.  Their hope is that the embolization will make part of my liver atrophy and the other part regenerate.  Then they can do a resection.  In the meantime, I am praying that the cancer will not spread in my body.  Have your doctors mentioned anything like the portal vein embolization?  My very best wishes and prayers for you, Patti.


Re: New to Board, to CC, that's what they think I have now...

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?

41 (edited by Sophie Thu, 24 Apr 2008 19:22:04)

Re: New to Board, to CC, that's what they think I have now...

Patti, I actually found out the size of one of my tumors yesterday morning.  It is 11.8 cm x 8.2.  That's just one.  Then one of the lymph nodes is also suspicious of having metastasized.  I was really depressed.  The surgical oncologist told me not to worry about it.  They would take it out when they did the resection (it's my prayer they can do the resection.)  I just started chemo today Gemzar and after they see how this affects me, they will add the Xelora (sp.) people have mentioned.  None of us ever know.  I just think you should be positive because your tumors seem relatively small, but I would be like a pitt bull and not give up about getting in  immediately.    I'm just a layman, but I hope that gives you encouragement.  I will be on the Gemzar once a week for 3 weeks, then off one week, then on another 3.  After those bouts of chemo, if there is no success, I'm going to try to go to the Mayo Clinic in Rochester, Minnesota.  I totally understand your frustration, and I was debating if I should even get on this site because I'd get too sad, but then Jeff's comments always give me encouragement. 

Thank You, God, for the people in my life who have stood in the gap and prayed for me when I didn't even know I needed it. You have sustained and protected me through others' prayer. Use me to do the same. Amen.

I'm praying for you, Patti, and everyone else on this site. 


Re: 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!  hmm

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! smile

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??