Yes, it's been over 3 years now and I'm still here.  Still on the phase I clinical trial I started over a year ago at Mayo.  It's now actually closed.  I've been on it longer than anyone else.  Not sure what God has planned for me.

I don't read the posts very much anymore.  Just wanted to let others know my 3-14 month diagnosis didn't necessarily mean for me to take that as factual.  We all have numbered days on this earth.  Those of us with a "condition" are just told those numbers of what might be. 

Live life to the fullest, enjoy your loved ones.  Let the little things go as they are not really important.  Go with God.

Kathy

2

(4 replies, posted in General Discussion)

This is wonderful news!!!  Thanks for posting it.  Strides in all cancer research help all of us.

Kathy

I have had terrible acid reflux with every treatment.   I use to take a prescription of Prilosec 40 mg and that worked great.  I think I started out with 40mg twice a day as I had developed and ulcer on my esophagus which made me continuously nauseated.

Had to change with the trial I am on now.  I now take Pantorprazole Sodium 40 mg (prescription) and it completely controls the problem, even with partaking of lots of salsa. 

Pepcid AC over the counter only worked short term for me.  It seems what works for some may not work for others.

I agree that I would have chosen a phase II or phase III trial over a phase I trial, if such would have been available.  I'm on a phase I trial, MC0811, and will be starting my 13th cycle in two weeks.  They started at the lowest dosage level, which was probably lucky for me.

I do not have your knowledge about medicines, but I totally support phase I trials and feel blessed I qualified.  Most likely feel that way because so far it's working and I am the person who has been on this trial the longest. 

Without phase I trails there would never be phase II, phase III, or the ultimate "miracle" drugs.

Cathy,

Your post brings many smiles.  May there be very few bumps in next 3 years.
God bless you and the families that chose to give you life.

Kathy

I'm glad you have done so well.  It's interesting how people can look at you and see this "healthy" person.  A neighbor told my husband that my cancer must not be that bad because I hadn't lost weight and still had my hair.  (No longer have hair but wear a wig in public so they still can't tell).  This was during the time of my original survival diagnosis of 3-14 months.  Statistic wise we do not fair well, but always remember statistics are for the masses, not the individual.  I've way disproved them for me.

It's been 34 months now.  Inoperable, stage IV with portal vein and hepatic artery involvement and then "disease progression" in June 11.  I have presently been on a clinical trial for 10 months.  Before that time I have had radiation with 24/7 5-FU and then 7 cycles of Gems/Cits.

As for work, I quit the best job ever as soon as I was diagnosed.  At the time I believed my original survival diagnosis and thought if I could get on disability I would qualify for medicare, which I wanted to be able to go out of network.  Found out it takes 2 years on disability before medicare became an option.  I've been on medicare (and have another full policy) since Dec. 11.

I was approved for ss disability in 2 weeks.  It seems bile duct cancer has been on a "special" list of conditions that get almost instant approval.  There is 5 month waiting period before disability checks start, but the waiting period goes back to your first day of not working.  At least it did for me.  The very important thing is that you have not worked even part time, if you want to apply for disability.  Your waiting period will not start until you are not working.  After you get on disability they have a work program where you can work part time and still collect disabiltiy benefits.

Some people need to work for various reason.  Some for the insurance and paycheck, some for the achievements, mental health reasons, some just to keep things as normal as they can.  I personally do not have those reasons and want to keep my stress level as low as possible.  I had a wonderful job and supervisor who would have been very understanding, but I want to keep my stress level as low as possible.  If I could not do the job as good as I wanted or took too much time off, it would have been stressful for me.  I do miss work, but it's nice to sleep in everyday until my body is ready to get up.  With this chemo brain now, I couldn't even do my former job yikes)

Wish you the best.  God bless. Take care of yourself.

Ash,

When you reply to a post there is an option to "subscribe to this topic".  It's right under the message square (when you preview message) and right above "submit reply".  Just put a check mark in the box and you will get email notification that something has been added to that thread whenever someone replies.  I'm sure it's also available if you just submit without previewing.  This way, you do not have to get notifications for all threads.

Kathy

Amy,

I have a metal stent which clogged a couple of weeks ago.  Went my ambulance to Mayo and they did the ERCP about 5 hours after I arrived.  Felt so much better!

I was discourage because it had only been 6 months since my last clog.  The time before that was 15 months and 5 months before that time.  Anyway, the GI doc told me they sort of expect it in 6 months time.  Also, my oncologist who has always told me to do anything I wanted, told me not to go on another cruise this week when my husband mentioned that we should.  (We had just gotten back from a cruise when this happened).  My oncologist said he hadn't read any studies on it, but from observation they can clog up again in two weeks time maybe because there is some irritation with the procedure.  There's also the risk of infection after the procedure.

I was diagnosed with stage 4 unresectable cc July 09.  One thing I've learned is that you can get very sick very fast and yet feel very good 3 days later.  You have to have prompt and good medical care , though. 

Hope your mom is feeling better soon.

God bless you and your mom,
Kathy

9

(3 replies, posted in General Discussion)

Have a great time in Mexico.  We just got back from a cruise.  It was wonderful!  So relaxing.

Kathy

10

(3 replies, posted in General Discussion)

Hope you have great news after your MRI. 
I use to have these every three months.  Now that I'm on a clinical trial it's once every two months.  The ear plugs help nicely with the banging.  Some MRI machines are faster than others.  I have had MRI's completed in 40 minutes or so. 
Speaking of confinement, the grand old MRI is the reason I first decided to be be cremated.  At first I hated having an MRI because it felt like I was in a coffin.  I've gotten over that and it's not really a big deal now, but I'm still going to be cremated.  Seems to me like a very "green" thing to do :-)

Kathy

Sounds like you need to vent.  I feel so bad for you and your husband having to go through this.  The delays just make it harder.

May 14th seems a long time away.  Is that the soonest you could get in, or the time you wanted?  I had my first appt at Mayo within a week.  If you want in sooner, ask your GI doctor (or your GP doctor) if they will make an appt for you.

Was a stent put in the bile duct?  Do you know his total Bilirubin count? Ask for copies of lab work etc.  It's good to keep all this in a file.

Kathy

Jeff,

I've read a lot of the above posts, but not all.  You are a very interesting person.

Don't believe the statistics about your situation.  I was diagnosed with stage IV inoperable bile duct cancer.  Almost qualified for a liver transplant but that darn tumor grew too much in the month after diagnosis.  Anyway, they told me 3-14 months max.  I'm now 32 months out.  I've read online that less than 1% with inoperable live 2 years.  Beat those odds smile

I've had radiation and FU-5 chemo for 2 months.  Think it totally killed the original tumor - my opinion because it never shrank but is consistently stable.  About 7-8 months later started gems/cits as a preventative for 7 cycles.  About 8 months after that ended they found a new area of disease with spots on my liver so I joined a phase I clinical trial that I've been on since the end of last July.  The spots on my liver can't be seen.  Lymph node on my spine is shrinking and spot around my stomach is shrinking.  I didn't even realize I had one on my spine. 

We've been on 2 cruises since my diagnosis and we are leaving for another one tomorrow so I won't be on the site for a bit.

I've felt good most of the time.  Probably had less down time and less sick days than if I would have been able to have a Whipple.  We are all different.

Don't know what's ahead, but my trust is in God.  He is directing my path and will take me "home" when it's time.

And yes, I do eat 3-4 stalks of asparagus twice a day.  Well, I'm actually on an asparagus break right now (like a chemo break smile ) but I plan on starting back up after the cruise.  I sort of call it my probably false internet cure smile  Never know, though.

Have a great week!  I plan on it.

Kathy

Percy,

I am sorry to hear of your loss.  What a beautiful tribute you gave her, and what a wonderful Christian legacy she left.

Kathy

Tiffany,

I got the terrible face "rash".  It actually looked like the worse case of acne a teenage boy could have.  My oncologist put me on Minocycline HCL 100 mg caps twice daily.  I think it's an antibiotic, but evidently not a really strong one because it doesn't work for other infections I might get.    This med has worked wonders for me in keeping my face clear and it doesn't affect my stomach as other antibiotics do.

Cindy,

My view is that a clinical trial is a great hope.  Right now I would rather be on a clinical trial than standard chemo for cc.  Maybe I have to think this way since I'm on a clinical trial smile

God bless all of you,
Kathy

Tiffany,

GDC-0449 is also called vismodegib - brand name: Erivedge.  It was just approved for "metastatic or recurrent locally advanced basal cell carcinoma in adults who cannot be treated with surgery or radiation."  That's not what I have so it is not FDA approved for cc.  The National Cancer Institute pays for this drug on my trial.

http://www.cancer.gov/cancertopics/drug … vismodegib

Kathy

Pam,

I don't post very much anymore.  I am the cc patient and not the caregiver. 

I do understand your falling apart when things don't seem to be as good as you want them to be.  There are those who will think this is strange, but I've often thought I am blessed to be the one to get cc instead of one of my kids. 

My heart goes out to you. Although your news isn't as great as you had hoped for,  it is GREAT news.  You've had shrinkage and even stable is great news.  Cling on to hope.

God bless you.

Kathy

Marion,

Yes, I receive Gemcitabine once a week for three weeks in a row.  Then a week off.  The oral drugs are taken daily.

Kathy

Great MRI report!  Original tumor stable.  Three new tumors on liver can't be seen.  Spot by stomach shrinking.  Enlarged lymph node on spine shrinking.  Tumor markers went down 60 some points.

This is a phase I clinical trial.  There have been 55 people nation wide (at all three Mayo sites) on it and they have extended it to 55-65 more people.  I have been on this trial longer than anyone (since July 11) and it's working for me.

http://clinicaltrials.mayo.edu/clinical … _id=100871

Thanks be to God!


(Original diagnosis July 09 - inoperable Klatskin tumor, cholangiocarcinoma, stage IV, prognosis 3-14 months)

So glad Marina is feeling better.

Just a thought.  Even though Compazine and Reglan cause the same side effects, doesn't necessarily mean Marina will react the same to both drugs.  Maybe they even work differently.  I don't know.

I always got sick after chemo until I started drinking at least 100 oz of mostly clear liquid (not pop) in the 24 hrs after chemo.  It's not an easy thing for me to do as I usually don't  drink a lot.  I have to keep track of the ounces as I drink.

21

(4 replies, posted in Chemotherapy)

Tiff,

I have been on gemzar/cisplatin.  It was planned for 8 cycles. Chemo had to be postponed a couple of times because my white cells were too low. Had the neulasta shot which worked well, but I had a bad reaction after the third one.  My oncologist told me they really didn't know if 8 cycles were better than 7 and said we should stop at 7.

I decided to do this treatment 8 months after I ended my first treatment session of radiation and FU-5.  I learned from this board how new tumors often come and started the gems/cits as a precaution.

Stayed stable for another 8 months and then a couple of new spots appeared on my liver.  Now on a phase I clinical trial for the last 7 months.  Doing good.  Feel good.

I'm 31 months from my inoperable stage 4 diagnosis.  Original time line was 3-14 months.

Hope you hear the news you want to hear on Monday.

Kathy

When I was having radiation and 24/7 chemo in 09 I felt nauseated all the time. Zofran,, Activan and Compusine did not help the nausea.  As it turned out, I had an ulcer on my esophagus which caused the nausea.  Four days on a high dosage of prilosex and I was no longer nauseated.   

This may not apply to your mom at all.  We are all so different.

If the people you care for receive any form of steroids while doing chemo, that will do it.   It's awful, and it's awful coming down off them because it's like you have no control over your emotions.  Sometimes it hits, sometimes it doesn't.  I personally cry a lot at just the drop of a hat, and I am not a crier.  People react differently to them.  Sometimes I'm under the kitchen sink cleaning it out at 3 am in the morning because I can't sleep and just have to do something.  You just never know.

It's the chemo monster for us, too. 

The steroids do help us. though, in a lot of other ways.

Kathy

24

(3 replies, posted in Members' Cafe)

Thank you so much for posting this, Kris.  I've ordered a copy and sent the information to two others.

Kathy

When first diagnosed 2 1/2 years ago I had 24/7 FU-5 chemo (using a pic line) and 28 radiation treatments during the same time frame.  The tumor never shrank, but it definitely stopped it in it's tracks as it's been stable ever since.