1

(22 replies, posted in General Discussion)

I agree to go to the ER or Cancer Center immediately if you have quick rise in temp above 102 along with vomiting, or chills.  I almost waited too long in October and ended up 10 days in hospital with an enterobacter infection.  For me, the infections seem to happen when they change the stent/drain.  Any time you push stuff in or out of the body there's a chance of either introducing a pathogen or stirring one up.  Got another lesser infection two weeks ago but was only four days in hospital because I came in sooner.

Overall, I have had too many "close calls".  I'm in the hospital again because I got dehydrated and my kidneys failed.  I thought I was just suffering from really bad constipation (which caused me to vomit a lot because nothing would go down).  I was constipated but by waiting three days to come in I lost so much water that I was nearly critical when I got I here.  Lots and lots of fluids and I'm on the mend but...

Really - trust your body.  If something's not right look into it ASAP.  Better safe than sorry.

2

(28 replies, posted in General Discussion)

RX of Hawaii may be just the trick to put your recovery back in gear.  And even if not -  what the heck - you're going to Hawaii!

You've made me rethink my priorities - I'm taking my family to Europe this summer come hell or high water.

All the best to you, Byron.  Stay high in the saddle and I'll meet you at the next hitching post.

Michael

Moffitt Cancer Center is participating in a National Cancer Institute "Phase 1 Pharmacokinetic Study of Belinostat for Solid Tumors and Lymphomas in Patients with Varying Degrees of Hepatic Dysfunction".  Study# CTEP #8846 / MCC 16683.   This is the only chemo option my oncologist knows of for patients with elevated bilirubin levels, who would otherwise be at high risk to take the well-known chemo drugs.

Belinostat is currently being used to treat Lymphomas in non-liver-impaired patients.  I don't know how effective it has been, but the NCI wants to find out how well it works for patients with liver problems which leads me to believe that they believe belinostat is less hard on the liver than other chemo.  Belinostat works by turning off the switch that tells cancer cells to multiply.  What NCI doesn't know is whether patients with compromised lived function can tolerate it, and, (big AND) how effective it is on SOLID tumors.

The release form makes it look like it may be Florida only, I don't know if they are testing elsewhere.  They are looking for only 80 participants.  There will not be placebo testing, however patients will be randomly assigned different dosage levels.

Thanks to my health improving, I won't (yet) be participating.

If this trial is of interest to you, the contact at Moffitt (Tampa, FL) is
Richard, Kim, MD
Moffitt Cancer Center
12902 Magnolia Dr
Tampa, FL  33612
Tel: (813) 745-1277 

Best,
Michael

4

(7 replies, posted in Chemotherapy)

It is a beautiful day in Sarasota.  Temperature 78 deg F, fluffy clouds in a blue sky, light breeze.  Shhh!  Don't tell anyone! wink

After 6+ months of elevated bilirubin, I learned today that I'm down to 2.2 - low enough to start chemo.  And not a moment too soon.  I've metastasized to both lobes and to the abdominal lining, maybe more.  I'm ready to start!  Scheduled for first dose Jan 30th, right after I finish my antibiotic regimen for the infection of last week.  FWIW, I'm done with the Therasphere trial, it didn't work for me.

I've been following with interest Derin's story, regarding what chemo to use.  My Onc is also being very cautious and will start me only on Gemzar at first to see how I tolerate.  We can't let the bilirubin rise.  Derin, I emailed you but maybe it got lost.  Where are you going here for treatment?  I'm driving up to Moffitt - one hour each way, but once initial dosage and followup is done I can get the infusions locally.

Following the recommendations of several on this list, I've decided to get a port.  I figure, "Why wait?"  I've been a blood donor for 30 years and now I'm getting stuck and IV'd weekly, sometimes daily.  It's getting harder some days to get a good line.  The phlebotomysts (sp?) are great at Moffitt but the clinical nurses don't always stick me with the same ease.  I can see the scarring and am tired of putting up with "fishing".  And has anyone else noticed how veins will roll when you lose confidence with the nurse's needle stick?

Had my bilirubin not gone down, I was given one other option (other than palliative).  Moffitt is part of an NCI Phase 1 study of the effectiveness of belinostat for patients with hepatic dysfunction.  I'll post that info on the Alternative Treatments board.

Best to al,
Michael

5

(13 replies, posted in General Discussion)

If by external stent they mean internal/external, where the stent is a perforated tube in the duct with a tube that goes outside of the body, then I am surprised that that wasn't done before the internal stent.  I had two internal/external stents (both ducts) for a while and was so happy to have them internalized.  But I knew because the doc told me that they would get clogged and need to be cleaned occasionally.  That's what I thought was happening a few weeks ago, but it turned out that the tumor had grown up past the steel stents and was crushing the duct above the stent. So now I have another internal/external stent.  But enough about me.

The external part of the stent is a tube ending in a valve outside of the body.  If there is blockage in the duct, a "bili-bag" much like a urine bag is attached to it to take the overflow. 

The advantage to the tube is that the docs can insert a wire to manipulate the stent and can insert contrast dye to check to see how the duct is working, all without any sedation or pain, just a fluoroscope and a quick check and the doc has a full picture.

Disadvantages are many.  The tube hurts and may make it hard to take a full breath.  There is pain after the tube is put in that may be significant for a while - it certainly has been painful for me.  The tube is held down by stitches which can pull out.  It is difficult to take a shower because you need to waterproof the hole in your body and the dressing and tube coming out of it.  You will need to flush the line with saline on a regular schedule, and also change the dressing.  If a drain bag is needed, you need to incorporate the bag into your daily wearing apparel - usually the bag is warn hanging from the neck so that the drain point inside the bag is about nipple level or higher, so that the bag doesn't drain liquids from the intestines all the time.  You will need to empty the bag (if you have to have one) and keep everything clean.  The tube and stent will need to be replaced - how often depends on how often it gets clogged but every 8 weeks or so is probably a fair estimate.

Unfortunately, if your internal stent isn't working, the external tube is the only way to go.  I can only offer my experience with this and hope your experience is positive.  As always, please have your mom talk to her doctor about the effects of any procedure, get her to write her and your questions down before the visit, and go with her or have a friend go to have another set of ears to catch anything that mom might miss.

God bless and prayers for your mother,
Michael

6

(39 replies, posted in Members' Cafe)

When I joined, I thought about what I was doing and why I wanted to join the CC Discussion and came up with the idea that I am a traveller just beginning a new journey along a path that so many others have taken, are taking, and are now leading me. 

Michael

I've been looking through posts and have seen tylenol with or without other things as a help to side effects.  Actually, all my docs tell me that tylenol/acetaminophen is really hard on the liver when it is compromised and should be avoided.  Ibuprofen has its own downsides but seems to me to be better for my body chemistry for all that ails.  Has anyone else dealt with this quandry?

8

(33 replies, posted in General Discussion)

Hello Mrs. Austin and family,

I am very much like your husband with regard to the difficulty eating.  It amazes me that I am able to be hungry and also unable to put anything in my mouth at the same time.  It is incredibly frustrating and and without food the lack of energy made me start to give up.  Please don't let that happen!  I think I've got a solution for now because after losing 35 pounds over two months I'm beginning to GAIN weight and my appetite is back.

You might try asking for Marinol which is synthetic THC (yes the drug in marijuana).  It helped for a few weeks but got less effective after that. 

Then my onc put me on Dexamethasone (a.k.a. Decadron I think?), a steroid (tiny pill) once a day in the AM.  Half an hour after the dex and I feel hungry and for three weeks have been able to eat a full breakfast, lunch and dinner with snacks in between.  Have GAINED a couple of pounds!

I've also found that, if I DON'T eat a full breakfast, the effect is not as good later in the day.  It's true: Breakfast is the most important meal of the day!

Hope this works for you.  Don't give up, don't let doctor indolence stop you from demanding that your husband get the care he deserves, and don't sweat getting a second or third opinion even if you have to pay for it - the universe will provide for you if you ask.  Heck, I never believed we could afford to have a baby and now she's 14 and the most beautiful thing in the world, and we're not broke.  Go figure.

Peace,
Michael

9

(6 replies, posted in General Discussion)

Thank you all for the kind wishes.  Still in hospital as they haven't identified what bug is in there, possibly only a release of a small pocket into the blood that the white cells gobbled up as they should, leaving little to trace.  Temp, heart rate and pain spiked again last night so another round of fluid cultures to wait for.  Abdomen really distended but ultrasound says no fluid.  SEVERE bouts of liver pain especially around the tube entry site - this stent is not going to get internalized.  Three days with only drops of bile overflow into the bag but today filled the bag three times - must be back pressure from the distension.  Have doubled the base pain med to 20mg OxyContin 3x day which has finally (crossed fingers) brought the pain back to heel.  This is a roller coaster!
Michael

10

(6 replies, posted in General Discussion)

Been offline for a long time.  I'm sorry to say that the Therasphere has not prevented the disease from metastasizing to my abdomen.  Having my second bout of enterobacter now in two months, they had to put an internal/external stent into the right bile duct after the tumor grew up above the steel stents and crushed the duct, then the infection came back.  All in all not doing awful considering what would have happened by now if I hadn't been diagnosed quickly.  Now I need to get the bilirubin down to about 2 before they will start Gemzar.
Thanks for all the support so far and keep up the good fight!

Margaret,  If Tom is up to it you might want to get an evaluation from Dr. Bulent Arslan at Moffitt Cancer Center in Tampa.  I didn't think it would be possible to join the left and right stents together at the junction into the main duct, but he had done it successfully three times and those patients have been clear over a year.  We talked about it for a while, there is of course a chance that the joint could be susceptible to infection, but I would rather treat infections occasionally than manage the external tubes daily.  Not all is internal yet, there are tiny tubes still in until we can confirm that all is well, and thanks to the infection I've got a PICC line on my arm which is probably permanent unless I start chemo and need a port.
Thank you everyone for the cheering words.  It is indeed good to be home!
Michael

Well I decided to internalize the tubes.  We put in two steel/teflon shunts in the left and right ducts, joined at the main branch through the magic of Dr. Arslan.  This should keep the tumor from closing the ducts, at least for a year or two. We'll deal with figuring out how to replace them when we cross that bridge.  Another week with two #5 access tubes, then no more external tubes!
Except for the PICC line, which is going to be around for a while. Just as well because I need to take IV antibiotics at home for four weeks. Stupid bacterial infection.  The PICC line is kinda cool, though.  I love technology.
Going home today! Ten days in hospital is ten days too much.

13

(36 replies, posted in Introductions!)

Pam,
Best wishes for a safe trip and successful round.
Namaste,
Michael

14

(8 replies, posted in Members' Cafe)

Angels (and demons) exist, of this I am positive.  Since my diagnosis, I have repeatedly seen faces of people I do not know looking directly at me in dreams and daydreams.  I see small movements in and out of my peripheral vision while awake.  I have so many friends and strangers praying for me.  I can see them.
Many years ago in my youth I got into a situation where a driver, much older than I and enraged by my flipping him off, had me by the throat with his other hand pulled back to punch me.  Out of nowhere a thin young stranger with a beard pulled up in a VW bus, got out and said calmly, "Whoa! Take it easy. That's my brother."  The old man relaxed and released me, went back to his car and frantic wife, and drove away without a word.  The young man was gone in seconds, also without a word.  This is a true story. 
Always believe that you are not insignificant to the world and whatever else is around us, and that you are not alone.
Pax,
Michael

15

(13 replies, posted in Members' Cafe)

Gavin,
So sorry to learn your holiday was spoiled.  You said the first half was good and the second not so much but at the end of the game you came home, so that's better than a tie game! Hope you're back to good health in short order.

And Go Bears!
Michael

ed. note: Just realized what a dunce I am.  The Bears are playing against the Tampa Bay Buccaneers.  I am in Moffitt right now, in Tampa.  I'd like to modify my previous statement  ever-so-slightly to, "Go Bucs!"

16

(2 replies, posted in Announcements)

Marion,
How are advocates selected?  I realize that you are one and I thank you for that.  What I don't understand is, for each individual trial run is there an advocate chosen?  Does the advocate represent the patients in only the one trial they personally participated in? Or, more likely, have I misunderstood some key concept?  I think it would be great to see a patient's voice on those micro-print drug inserts!

Thanks Margaret,
The colored liquids appear in both the left duct bag and the right.  The left catheter is larger and older, the right catheter is only a few days installed and still flowing slowly.  So liquids appeared first and primarily in the left bag.  When the left bag was lifted above the shoulder, liquids flowed freely into the right bag.  Tests so far have not found a fistula or other likely path such as a mis-placed catheter.
Thank you so much for your posts and concern!
Michael

18

(57 replies, posted in Introductions!)

Adam,
I am so sorry to hear of the difficulties your wife is having.  I am no expert on anything though I am finding that cc is a disease that can do unexpected things.  There is no reason not to believe that cc might not let up and give your dear wife the clearness of mind he deserves.  Call me naiive, I think that's better than being pessimistic.
Regarding the 5-FU:  If she is still taking that chemo, there was a very interesting study done at Moffitt Hospital (where I am now a guest) finding increased remission rates using a chinese medicine herbal concoction called "Bing De Ling" in concert with 5-FU. If your oncologist has an open mind I believe that he will agree that it bears trying.  A link to information is here: http://www.ncbi.nlm.nih.gov/pubmed/16008516
Dr. Zhao, one of the study authors, just started giving me Bing De Ling along with acupuncture and other herbs (though I've had to stop taking it while in hospital).
Regarding your blessed children:  It is so hard for grown-ups, let alone children, see the good things in someone so ill.  There is a way to preserve the best of times for you and your children.  I urge you, if you can, to bring a tape recorder (a video recorder is even better if your wife accepts it) to her bedside whenever she is coherent and able to talk.  Ask her about her life - where she grew up: what was school like for her; how did you two meet; how did she feel when each of your children was conceived and born; what are her fondest memories of her children, you, and her life, etc.  This is what I did over the course of several years with my grandmother once I'd started to see her decline.  Grandma had amazing stories to tell about her journey to America, coming through Ellis Island, and starting a family.  My wife and I lost Grandma quickly through medical complications.  We get so much comfort, and my daughter has learned so much about her family, through these recordings.
Seeing their dear mother change so quickly before their eyes has to be traumatic to your blessed children.  I hope that you will find a way to help them remember the good things, should the worst occur.
Do try to keep a positive outlook - this discussion board has amazing stories of the surprising turnarounds that can and do occur every day thanks to the grace of God.
My prayers are with you and your family. Much love to you all,
Michael

Marion, Yes the team here has treated over 200 CC patients.  The problem with liquids and solids is that there is obviously a direct route from the digestive tract into the bile ducts.  Anything I eat or drink has a high chance of contaminating the liver.  Until we find out what that route is, a regular diet is unlikely.

Margaret, Great post and thank you for all the information.  I'm confused by the bilirubin numbers you gave in the tens of thousands.  Are we using a different scale? I love tegaderm, too. It is pricey, but worth it.  Your bandage change instructions are pretty close to how we do it, except the doctor specifically said not to flush and didn't give us a syringe.  The medical stores won't give us one without a prescription.  I will definitely have a talk with my doctor about that.  Thank you again!  Everyone on this site is so helpful!

The plot thickens...  I haven't been allowed to eat anything solid since Mon night.  The docs had me only on ice chips until Tues night, when I got some fruit juice. Weds morn started great with breakfast of clear liquids and thin oatmeal, but I was happy.  Then I was put back on ice chips because my blood pressure shot up.  Finally Thurs noon I got a cherry popsicle! Imagine my surprise when, a minute later, what looked like blood started to fill my left duct bag.  The doctor said it looked like the food coloring from the popsicle was going to the bile duct.  Strange, but at least not blood. But when dinner came, immediately after drinking 100ml of cranberry juice, 100ml of red color appeared in the bag.  Same for the jello and iced tea, except different colors.  The bag was emptied, then 200 ml of broth was consumed and went straight into the bag.  When the bag was lifted above the head (Thursday) fluids filled the right duct bag.  So, other than test fluids, I've been on a no anything diet for a day.  Can't say I like it.  Ultra sound and xray have found nothing yet, though the CT is still being evaluated.  Has anyone heard of this?  Oh, and the bilirubin dropped to 13 (not 10), I was given the wrong number.  And it has stabilized at 13.

Byron,
I spent a lot of my youth in Scottsdale, AZ.   We didn't have our own horses but lots of my neighbors and friends did.  Probably rode more horses than bikes and dirt bikes.  I really liked quarter horses.  Fun to ride and nowhere near the high maintenance of Arabians.  Haven't ridden in years, guess I need to get back in the saddle.
Anyway, good news - turns out I got a bacterial blood infection from the bile ducts.  If I'd (been able to) waited another day to come I probably would have been critical or worse.  They'll have the name of the nasty bug late tomorrow or maybe Friday.  Then two days more IV antibiotics in the hospital and home care after that.
Still haven't pinned down the belly pain but my bilirubin went from 20 on Monday night to 10 today.  Hoping this oral anti-itch med I just took kicks in soon.
Y'all keep up the good fight!

It"s more localized, I think, than gas pain.  Worst spot is the right side at the bottom of the belly, and spreading to the belly button.  Discomfort and frequent cramping throughout the abdomen though.  Distension comes and goes but always some swelling.  I pass a LOT of gas, and we haven't seen blockage in the abdomen scans.  Also recently started burping a lot recently, and the burps make the catheter insert sites hurt.  So they will be keeping me here in the special care unit for a while to try to figure it out.  Dang it's hard to type in bed with one hand splinted to keep a transducer in place below the wrist and an O2 sensor on the first finger mashing the caps lock.

Bit of a setback.  Temperature spiked and blood pressure dropped.  Back in the hospital being treated for infection in the biliary catheter.  Replaced that and found out the right bile duct was also blocked so now I have two catheters and two bags.  bonus  Checked out for ascites and found very little fluid in the abdomen, not enough to explain the distention and ab pain. Might be gas but how would that get there?  More tests to come, I suppose.

Oh, and thank you for the suggestion, Andrea.  I like V8 a lot.  I can only drink a glass or so before I get full, though.  I like to put lemon juice or lime juice in it, maybe my body is telling me what it needs.  It's even better with Worcestershire sauce, pepper and a little hot sauce with a celery stick.