I'm glad I have good news to report! Chatting with Lainy about meeting up in Phoenix next weekend. I hope it works out!

Hope things are going well for you and your husband and family.
Patti

That's the stuff I don't know yet. I plan on talking to her this week and urge her to get her ducks in order. I'll let you know - the delay is that her friends aren't there that weekend, but we can stay at their place, vs. finding out when they ARE going to be there and planning something with them - evidently her pals are in flux as well right now, but she's going to be with me for 3 weeks, so at SOME point I oughta know something!  (sisters.... sheesh!)
So keep it in pencil for now  roll
Looking forward to it!
Patti

Actually, my sister - a breast cancer survivor (she was diagnosed just 9 months after I was diagnosed!) is coming to visit at the end of the month.
We are currently planning to stay that Friday night/Saturday in Phoenix at one of her friend's place. Sooooo.. maybe we can "do lunch" that Saturday - I think it's the 18th. Possible???

Let's keep in touch, I think it would be terrific! Is that day any good for you?

Janel should be letting me know her specific plans shortly, but she IS flying into Phoenix, so I will be in the "neighborhood"  as they say  wink

Hey Lainy! Good to hear from you!

I keep hoping some event will happen either here in Tucson or in Phoenix. I'd sure love to meet you and the others in this group. Thanks for the congrats! I do feel lucky. I must say, I got some amazingly excellent counseling about 2 years ago that really helped me. I now feel I'm back on track and living a real life. I encourage anyone who can to get support wherever they can.

All the best! Please keep up the excellent work.
Patti big_smile

Hello there!
It's been ages since I've logged in here - thanks for the email about February.

A comment to Patty in IL: I was diagnosed Aug 1, 2007 so am about to hit the 5 year marker this summer. Like you, I was not very symptomatic - at least as far as I knew! They found it during a CT for my lungs - another problem entirely as it turned out.

Anyway, as Marion mentioned, you could continue to be "stable". I apparently am, and I've had no growth or shrinkage since the beginning despite all sorts of chemo's, a second biopsy, genetic analysis, you name it! Nothing seemed to "help" but nothing got much worse either - it's VERY slow growing. I posted about my treatments here until they stopped.

A year or so ago they stopped all treatments and by this coming July it will be a year and a half. I sorta feel like I have my life back! I have somehow gotten to a place where I don't think about it regularly anymore - in fact I thought I'd already hit the 5 year marker Last summer!!!  hmm

So, this is my latest update since I first logged in here in Feb 2008. I'm doing fine except for what are probably after-effects of chemo - bad teeth mostly. I sure hope it brings some sunny light to others out there.

All of the BEST for everyone, Love and many thanks to this wonderful place.
Patti
Oh I forgot the point about onset!!! Duhhh... They told me when they decided it was cholangiocarcinoma that I'd probably had it for several years. I can't relate that to anything special in my life.

hi Rowena32 and all,

My doctor visit was a bit strange. He started out telling me that he "really" thought that the test results were a bit harsh and he really didn't agree because "they didn't know" what all (and for how long) stuff has gone on for me. I am VERY  much going to get that report!

He said that basically there has been little change. Looking at just the "facts" the two (two??? I thought there were seven!) tumors, they "really" haven't changed much from the beginning. I asked about the missing tumors and he said " oh, they didn't show up on this scan, they were gone" WHAT???????????????????????????????????????????????????????????

Long story short, he said he was fine with me waiting 6 months until my next CT scan (instead of 3 months). So I said "fine".

I don't know what all that means. Until I see the report myself, I don't really know what he is talking about. I trust him, but I continually feel that since I'm still alive and relatively healthy, they just have to wait until something "goes wrong".  I dunno.

I'll post again when I see the CD of the scan and read the report. Meanwhile, I'm confident that not much HAS changed and that I'm one lucky girl.

All the best to all,
Patti

To answer rowena32 I do not have a stent - my bile ducts were never blocked and my blood levels never raised havoc. My type of cancer is strange at best!
They talk about it being "very slow growing" and there's been LOTS of debate about just what kind it is. So I doubt anyone can go much by me.

Tomorrow afternoon I go see my onc and find out how the Pet/CT scan went.

Response to what supplements I took:
Oh, for a long time I took supplements - A super multi vitamin. It was designed for women, but I assume there is one for men too:
Source of Life

Ohhhhhh! Thanks everyone for responding to my post - that always feels sooo good! wink
I did some more research and called the AZ Cancer Ctr here in Tucson, AZ and they tell me they have a New machine that, as Marions was explaining, puts the two scans together - but since they can do both at the same time, on one machine,  they avoid all (most? some?) of the alignment issues. News to me! I'll let ya'all know how it goes.
Hugs to everyone!
Patti

Hello again friends and new members.

I haven't been on this board since my last CT scan in October, but it (again) showed no change in the tumors in my liver. Similar to suzq104 (welcome and congrats on the 5+ years!) I've got a very slow growing variety. It's been 3.5 yrs with no surgery and many chemos, but always "no change". I've taken the oral chemos too. This last meeting with my Onc I asked him: "I get that there is relatively "no change" in the growth of my tumors, but we know that they DO move around, some shrink a little, some grow a little, and it's different each 3 month CT scan". I'm curious WHY do they do that? "

He replied that they don't really know, and I've busted all expectations as it is because I've had no surgery or anything other than chemos, and for almost a year now I've not been on ANYTHING. He then said, as if he just thought of it, that they now have a machine that can take both a CT scan AND a PET scan at the same time and overlay them on each other. He said I should try that in January (in a couple of weeks now). It might tell us something more about all these tumors in my liver.

Has anyone else had this sort of scan? Did it show anything? I've had two PET scans that didn't "work"...didn't show much of anything I guess. So I'm very curious!

But for the GOOD news! I'm still here and doing very well! I just turned 60 yrs old on 12/28 and boy I didn't think THAT would happen! I was diagnosed 8/07 and given 3-11 months, so.... I'm a happy camper~!

My sister, who got breast cancer 9 months after I got diagnosed, and I  just went on a trip to France! Believe it or not, she WON the trip in a contest online! So us two slightly beaten up "survivors" had a HECK of a time in France for two weeks this Fall. Never thought THAT would happen either!  I think I'm finally catching on to the idea that living for today is a great way to go!  :-)

Best wishes to everyone for this new year!
Patti

My pet peeve about this cancer is having to worry that each new bump or pain, or ache or headache or ANYTHING may be a (negative) sign about the cancer itself, rather than an "ordinary" ache or pain or whatever. Drives me Crazy!
Also driving me, personally, crazy is that I was diagnosed in Aug 2007 and now, three years later after tons of chemo, etc etc, NOTHING has changed! I'm grateful, but I have to say I'm also frustrated! smile Lately, after the 3 yr mark, I've finally settled on being able to plan (a little anyway) the future and not worry endlessly that I'm going to get really bad, really fast. Thank you powers that be!
Patti

Hi again all!
All these bits and pieces of our stories are fascinating, although a bit confusing. If I can ask....

Lisa, what caused you to lose weight in the first place. You said you went on chemo and are gaining weight "back".

Irene, when were you diagnosed? Has anything changed since? 

To all/anyone - have you all gotten sick, not been able to eat, on chemo? For how long? Just when dosed, or for a few days, through a whole series? Or is it the cc itself causing the problems?

Anyone on oral chemo? Xeloda? Does that make you sick? My onc seems to think that taking oral chemo is "better" but I'm not sure why... other than "convenience" by not having to go in and be poked, etc. To me, having to take 8 pills a day on a schedule is VERY inconvenient!

I'm currently on Xeloda, and have been since February 08. I take 2000mg, 2x /day. Evidently that's a healthy dose. I've taken Gemcitibine & Carboplatin, followed by Gemcitibine & Taxol - which was the only one that made me feel a little sick and of course lose my hair. Then 16 weeks of no RX, and now, as I said, the Xeloda. None of the chemos caused ANY shrinkage. They ALL seem to cause fatigue.

Irene, If you try a chemo, you don't have to assume it will make you really sick, at least that's not been my experience, and that's one person! smile Who knows if/how much they have weakened my system though. Each of the intravenous cocktails were stopped after two series (4 or 5 sessions). They were stopped because of no shrinkage and my first onc said to "save" them if they in fact were effective in slowing/stopping growth. But who knows?

The big thing for me was in FEB one of my tumors did grow a bit. I don't remember exactly now, but it was 10ths of a cm. (not a lot). BUT it was the first time I showed measurable growth and that was after almost 4 months with no treatment at all.

I'm beginning to wonder too, as you've mentioned, if I should just stop treatment and see what happens. But, unlike Jeff, I've had no surgery, and I don't know if cutting it out, or most of it, slowed things down, or if it was slow-growing in the first place. Without surgery, I'm more afraid to try it (again). Given that the Xeloda doesn't affect me other than fatigue....

Anyway, my CT scan is next week, so we'll see how that's going. My last CT showed no change, this one will be after 5 months of Xeloda - that should say something! My new onc said I could take a month off if it's still no change, but maybe I can risk a longer period of time, I dunno. I HATE that I've not had 20 yrs of medical training, but I'm the one who has to decide this stuff! sad

Seems we're talking about several things. Irenea said, "I am curious as to whether weight seems to be any sort of factor and whether it seems to have an effect on outcomes and speed of progression.".

So we have "cause" questions, (which personally bug me because of the way-too-easy blame game) Then we have "speed of progression" and "effect on outcomes". 

I was a skinny kid and didn't gain a lot of weight till my late 40's when my thyroid went crazy and I gained 40lbs in 2 months. But, I have had problems with "irritable bowl" for ages - undiagnosed and mostly ignored. I've read that those sorts of problems can irritate the bile duct and possibly eventually cause cc. Even so, I'm firmly in the camp of "who cares?" It doesn't matter now if something I did, or didn't do, had an impact on my getting this cancer.   I have enough to feel bad about without adding past guilt to my plate!

The speed of progression issue is interesting in that since cc is often diagnosed late, it makes you wonder how long it was there before found. My docs, too, mentioned that they thought I'd had it for a while  - because I had many tumors in my liver, and they couldn't actually find the source. So if it's been "indolent" all this time, that could be years, right? Maybe decades as Chrissy23 mentioned? It sounds from this posting that maybe slow-growing cc is not as odd as I thought - even after it is found?

Then there is the whole weight loss "weight to lose" issue. That confuses me because I haven't had much nausea from chemo, no loss of appetite, etc etc. Yet many others have extreme problems that way. I figured that the big difference is if you have blockage and jaundice and those kind of problems. Does "intra hepatic" and "extra hepatic" make that much difference? Is it having major surgery and all those consequences affect weight loss? I don't have the choice, but I am curious.

I expected to lose weight after a year of chemo, but no....... if anything, I'm hungrier now than I used to be (probably stress). I don't know if I have that to look forward to, or if having 50 extra pounds is a good buffer, or what! Everyone says that the more "fit" you are, the better you can fight the disease. I've wondered if I should diet. Have others made drastic changes in their lifestyle after diagnosis? (Other than those imposed by treatment or cc itself that you have no choice about).

Sorry if I'm running on and on. I don't have anyone here to talk to about the disease itself , so I guess once I start..... hmm

How interesting! I'm so glad you posted, Irenea, as I've wondered too. I'm quite overweight, and was diagnosed 8/1/07 (tomorrow is my one yr anniversary!).

I've had several chemos and nothing shrank any of my tumors. At first they didn't know what kind of cancer I had - multiple tumors in my liver - but upon re-evaluating my biopsy they determined it is intra-hepatic bile duct.

The interesting thing is that at my last appt. My oncologist described my cancer as "indolent" or as I call it, "lazy ass" cancer. It is not growing, or growing very slowly. It's hard to say if any of the chemos are having that effect or if that's just the way it is. Last winter we stopped all treatment for a total of 14 weeks and not much changed. Then in Feb one of the tumors grew a bit so they put me on the oral chemo Xeloda. I have been taking that ever since.

He says he's seen this slow-growing form before, but it doesn't happen often. No one will give me any kind of prognosis at this point.

Next week I will have another CT scan, and if it still shows no change, my doc says I may have the month of August "off".  We'll see.

But I have felt strange that so few people at the cancer center are overweight. I feel quite the odd ball and have had no loss of appetite. Of course I don't have any bile duct blockage either. The cancer was found by accident.  Still, late stage, mets to my liver, and at first they gave me a prognosis of 3-11 months, so .... HA! I'm still here!  Maybe that fat slows things down a bit, who knows? :-)
PattiB

Just a quick note to anyone dealing with SSDI and insurance. There are many twists and turns to this thing! You CAN work on SSDI up to a small limit of income. I had lost my medical insurance and was on Medicaid for a while, but when my SSDI started i was cut off that too. Just today I was put back on BECAUSE I work! Pretty unbelievable! The government programs that cover people like us are very convoluted. I just found one, "Freedom to Work" that allows me to work and still covers me with Medicaid insurance - I am in the two year waiting period to get MediCARE. I'm happy to tell anyone interested more about it if you email me.

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??
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

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!

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

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!

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!

21

(14 replies, posted in Announcements)

Have a great time in Hawaii!  Sounds wonderful!
Thank you for all of your helpful postings, by the way. I go back to the Cancer Center on Monday full of questions about 2nd opinions, other possible treatments, etc etc. Thanks to this entire site!

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!

23

(8 replies, posted in New Developments)

Hahaha, The pic I have of me in the hat isn't cute - during some rotten chemo. But... I would. I sent a pic of me in the purple wig my daughter bought me for Christmas this year. It's such a hoot! People have to grin when they see it. I don't know if that part of this website is working anymore _ The Face of...???
The F* Cancer hat gets a bit of a different response!

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

25

(8 replies, posted in New Developments)

I've got the hat! Have worn it to work (cool people) and then forgotten and gone into the grocery store or what not and boy did people stare! I saw the video on a TV special and it was very upbeat and supportive of the under 30 cancer people. I'm not in that group, but hey, the hat is cool! - even if a bit unexpected in a 50+ rotund little lady! smile