tess
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Hello Marion, I have sent you an e-mail offsite with contact information for Barb, she posted once or twice a couple years back. We have corresponded over the last couple weeks, off the cc site, and she has quite a story. I just dropped her a note and encouraged her to consider coming back to the site and sharing more about her story- per this thread. We’ll try & secure more details!
Best,
TessThanks Mary. We’ll follow up with the docs. first thing tomorrow. We’ve mentioned over the last couple weeks, amongst ourselves, that Dad’s coloring didn’t look quite right…. then you chalk that up to over scrutenizing… but this AM, there was no denying the jaundice! We’ll stay right on it- thanks, & best wishes to you Mary!
-Tess
Thanks so much Jean for providing your insights. I appreciate it. I wasn’t certain if bile can actually be extract via sweat glands or an orifice such as a pic line hole. Mom is going to follow up with the docs tomorrow, as something is definitely not right & it may have to do with that catheter. I’ll keep you posted. Thanks!
-Tess
Hello Dnicetry and welcome. Great weather for snowshoeing, you’re right! Particularly with a nor’easter on the way this week! We are almost neighbors…. we’re about 1.5 hrs. down the road in the Binghamton area. My Dad was recently diagnosed with cc. Don’t believe them when they tell you this is rare. In the last couple weeks, per this board, I’ve heard from cc patients & family in the Binghamton & Rochester area, and my husband’s grandfather also had cc. & was also local.
My little guy was born up in your neck of the woods 3 yrs. ago, at Highland Park! Dad is being treated down here in Sayre PA, at the Robert Packer-Guthrie, he has a good team. We’ve also heard good things of Roswell’s Dr. John Gibbs (surgery).
That’s great that the Gemzar is agreeing with you so well. Dad has been on Gemzar since Nov. and he too hasn’t lost a strand of hair!
There have been discussions on this site about possible links between cc & Agent Orange. It is my understanding that currently the VA doesn’t recognize it, but some continue to fight it. According to one gal I heard from this week, the VA does recognize ionizing radiation and bile duct cancer and they do compensate for it to the veterans exposed during a particular window of yrs.
Keep up the high spirits & best wishes to you!
-Tess
I told Dad about the pickle & he’s going to try it out, thank you. The altoids is a good idea too. Thanks!
-Tess
The interesting thing Lainy is that the pic line is very clean, the skin and area around the pic are in perfect condition (no redness, irritation, odor), and the green/yellow film is limited to the window & surrounding white lining. It looks as though the materials are responding to Dad, as opposed to Dad responding to the materials. No sure.
-Tess
Good point Marions, Mom was sorry that she let them throw it out this week. She was thinking, in retrospect, as you have suggested. But it’s back again, so perhaps we’ll suggest that at Tues. appt. Thanks!
-Tess
Thanks for the note. Mom did initiate contact with the 1-800 # this week & they sent her on to the sales rep. He’s been great about following up & documenting the case with the nurses, so hopefully he’ll take it back to the R&D crew. The nurses were adamant that it wasn’t an infection and they’ve been tending to the area for a few weeks now, Dad has a good crew here at the Packer in PA. The Gemzar is being administered to him via the pic (I believe). He’s tolerating it very well. Of course there is the fatigue & loss of appetite, salty taste in the mouth, constipation, some odd tingling sensations in the fingers, a bit of fluid retention, etc. But all in all, he’s responded quite well. He’s expected to start radiation later in Feb. i.e. brachytherapy via the biliary catheter. How are things going with your Dad?
-Tess
Absolutely Heather. I am just getting back from the store, tending to a grocery list specific to doughnuts, kit-kats, orange juice & french dressing (per Dad’s request). Even the sweet things taste salty to him so often anymore. But like you, Mom say’s that we have to get something into him! She is going to try the lemon sorbet on him tomorrow. Another drink that has been a big hit for him this week is the 1/2 orange juice & 1/2 lemonade. Let me know if the lemon works for your husband. Best to you.
-Tess
Great to hear from you Raye and congratulations on that big 1 yr. anniversary. To the rest of the cc readers, yes Raye is a wealth of knowledge & an inspiration!
Dad is holding his own, thanks for asking. He’s been doing chemo since since early Nov. & scans are due in the next couple weeks to determine how they will move forward with radiation (likely brachytherapy via the biliary cath). We’ll keep you posted.
Wishing you well Raye!
Best,
TessI hear you loud and clear Lainy, we’ve been there too… Lately Dad has been arguing that the crust on the bread is too salty & insists that Mom cut it off…. yet he has no problem putting away a half a box of saltines as his main meal followed by a handful of pretzels! Mom does manage to sneak a liquid vitamin into the rootbeer floats on occasion. Another interesting aspect of the chemrad brain is that it effects the familiy/caretakers of cc patients as well…. I may be quick to point out Dad’s brain freezes- but that’s only because I can’t keep track of my own!
Tess
You know Lainy, we’re going through the same thing. Dad & I went out in the car this week to run some local errands (he’s 64, was diagnosed in early Nov. & has been doing chemo since). Mind you this is his one-light-one-horse town, he’s lived here all his life. He pulled over, got out of the car, walked almost a full city block, only to realize that he was 3 blocks off. It scared me, quite frankly.
Mom takes frantic notes during the doc. appts. & keeps Dad’s pills out of reach (because of those brain freeze moments). Don’t try & slip Ensure into his milkshake though, or swith the channel when his eyes are closed…. suddently he’s sharp as a tack with a temper to boot!
Best,
TessHi Vince, you and your Mom are certainly in our thoughts. I followed up on a cream for Dad that Lainy suggested (SARNA) and it seems to be working quite well (as does the Aveeno). She found it at a drugstore & I found it in a major-local grocery store…. perhaps it may be at Albertsons. Additionally, upon our request the hospital has brought it into their pharmacy as well.
My Dad’s bilirubin level went up to 15.8 a couple weeks back, and then back down to about 2. Dad has a biliary catheter in him, to divert the bile. In fact, he had it changed today, the third one since early Nov. He is expected to start chemo (Brachytherapy) straight through the catheter tube. He is also on the Gem chemo- it has agreed with him pretty well.
Your Mom is lucky to have you there to be with her Vince, that’s a great gift to be able to give her.
Best,
TessVery interesting discussion going on here! Thanks to all for sharing!
My Dad, who was recently diagnosed with unresectable intrahepatic cc (Nov.3), is a 5-year colon cancer survivor. I also question the potential impact of environmental factors. My husband’s grandfather (also local) died of cc in 98′ (long time farmer), and another gal on the board just lost her husband to cc (about 20 miles up the road). This region in our town of upstate NY is proving to be a an ‘unofficial’, cancer cluster- including cancers of all kinds.-Tess
