The journey starts
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Hi Tom,
I hope you get some good news from your visit at Chapel Hill, I will keep my fingers crossed for you. And I am also hoping for a change in your luck, more steps forward and none back. Keep building that strength up!
My best wishes to you,
Gavin
tom…good luck with your visit at Chapel Hill. I is time for you to experience a giant leap forward. I am thinking of you and am crossing my fingers.
Best wishes,
MarionTomf:
Hang in there! We are all pulling and praying for you! Your journey is beginning to sound like my hubby’s (Tom) journey. Just about the time we think we’ll have a few days of smooth sailing, something else pops up out of nowhere.
I can equate to the foley cath as my Tom now has one too (due to a kidney stone) that they had to go in and blast. He has a kidney stent too but that will all come out on Monday.
The weight is really an issue for my Tom as well. He’s lost so much muscle tone that he looks like he’s loosing weight but he’s been staying at about 128 or so. He’s been on antibotics so much the past two months that he has no appetite. I have got to get him some high protein foods to eat!
Hang in there guy! Prayers from Wisconsin are coming your way!
KEEP KICKIN’ THAT cancer.
Margaret
Had my external stent put in last Thursday with mixed results. The external was put in and drained overnight with good results. The problem started about midnight when I cold not pee. I do have BPH and am on Proscar which makes the Prostate smaller. Since I could not pee, I had a catherator put it. Sure makes it hard to have a BM trying to drag the bag along.
Got up Friday AM and the nurse removed the external bag for the bile drain. That night I went home with the bile drain bag removed and a cathater bag installed along with a prescription for Flomax.
Everything went ok over the weekend. I just cleaned the end of the bile duct drain and emptying the cathater bag.
Today went to a Urologist where they removed the cathater. So far everything is working ok. I go back to the Urologist next Friday. After the Urologist, I picked up all the CD’s and paper work to take with me to the hospital at Chapel Hill where I will get another opinion. I also had a visit with my surgeon to check on my surgery that I had for the hole in my upper intestine.
Right now I take 1 step fwd and 1 step back. I started chemo, then had the intestine problem. Next come jaundice where my bilirubin increases. Can’t start chemo until bilirubin goes down. Have one bile stent put in with no help. Have another stent put in with no help. In the meantime, the size of the tumor is increasing.
Things just don’t look good. I’m just trying to keep my spirits up and not get down. I just need time to build up my strength so that I am not tired all the time. Now I wait to see what will happen at Chapel Hill.
Tom…Good luck with the placement of the external drain. I am looking forward to hearing that the bilirubin will drop significantly and that you can start your recommended treatment. Keeping up the weight certainly, will give you an edge up.
Best wishes,
MarionTom:
Sorry to hear about the internal stent not working. My hubby Tom’s bilirubin was up to 24.7 and that was with an external drain (they are a pain in the behind) but tend to help with the high billy level. After 28 radiation treatments his billy is now down to 9.1 (so the tumor has shrunk). Next attempt for an internal stent is next week.
I’ll have to try your mixture on Tom for some weight gain, only problem is that he is also diabetic so it may raise his blood sugar too much! Drat! He has been loosing weight right and left. (I wish I could say the same for me)
You hang in there and stay positive! And KEEP KICKIN’ THAT cancer!!
Once again, prayers are heading your way!
Go with God.
Margaret
Hi Tom,
Sorry to hear that the results of your CT scan were not what you wanted to hear and that your bilirubin levels are up. I hope the external drain works for you and helps with bringing this down, and I hope you can get a new plan as soon as possible.
My best wishes to you,
Gavin
Tom,
What Lainy said.
Sorry you didnt get the results we all wanted. I know how frustrating that can be. Time to get a new plan together.Kris
Hi Tom and so sorry to hear about the Scan. Do they have a plan? Glad to hear about your good weight though. Teddy had lost 40 LBS through the Whipple and about 3 months later gave away his suits, pants etc. Bought some new clothes and you know it. He is almost back to when he started! I should have known better, this old Sicilian loves his pasta!! Please let us know the “plan”.
Had my CT Scan last Friday with not so good results. The tumor has grown and a couple more have popped up. Went to Onc yesterday and the lab work indicated my bilirubin is now up to 17.4, which is not good.
Since the stent is not helping they are going to put in an external drain.
As a side note they put me on FLAGYL. Had problems with that. I had just about all of the side effects that are listed. The worst was vertigo.
My weight has leveled off such that I am not losing. I’m at the weight now that I would like to maintain. Previously when my weight was going down the surgeon said that instead of Boost or Ensure to try something like Pro Performance AMP from GNC. I mix 1 scoop of mix, 1 cup milk, vanilla ice cream, banna or strawberry. Tastes as good as Boost and probably cheaper over the long haul.
Tomf,
I am a very new member, with a mother about to start the Cisplatin and Gemcitabine chemo. I want to thank you for you wonderful diary- it is so incredibly helpful to hear from a real person with real experiences!!! I feel as if I know you. And I pray that you keep on this path and overcome the bumps along the way to BEAT this DEVIL!
Please keep in touch. With much gratitude and hope for you.I do have a stent in place. The doc that put it in said it is in a perfect location. He said it has 100% drainage. He now wants me to have another CT Scan to see what the problem may be. I’m waiting now for someone in scheduling to give me a call.
Hi Tom! Sorry you have to be on this site, however you have now found the best place to be.
My Hubby, also named Tom has had high bilirubin levels for the past 8 weeks or so, his climbed to 24.7 and they were unable to stent his liver, so he currently has an external drain to draw off some of the bile. At his last blood work, his bilirubin level had dropped to 22.7. He also cannot start Chemo until the liver is able to be stented, so that the bile can flow naturally where it is supposed to be going, into the intestines.
The way Tom’s oncologist explained it to us is this. The liver is like a giant garbage dump. Anything that goes into the body (like Chemo) is sucked up by the liver. 98% of the chemo will go into the liver and the 2% will go around the body looking for other cancer cells to attack. Then 98% of that 2% will be sucked up by the liver. If he were to go on chemo while the liver is blocked by his tumor, he would very quickly reach toxic levels of chemo in his liver and that alone will kill him. Therefore they have to make certain that the bile is going into the intestines rather than into his entire system.
Since they were able to stent your bile duct you should see your bilirubin level normalize fairly quickly.
Have your docs discussed radiation with you as an additional treatment or as an alternative treatment while you cannot be on Chemo? If not, I would suggest asking them if that would be an option.
Since my Tom cannot be on Chemo right now they are doing radiation treatments for him and this alone has seemed to help. Where before he had no color at all to his stool (no bile getting into the intestines) his stool now has color (bile getting into the intestines) so this alone suggests that the radiation has shrunk his tumor. He has two more radiation treatments to go, for a total of 23 treatments in total.
Next steps for him are to try to stent the liver again (they’ve tried 5 times and failed each time for various reasons) and once that is stented, his docs say that the bilirubin level should return to normal as quickly as it climbed….Once his bilirubin level is back to normal (which they tell us are from 0 to 1.3) then he will start on chemo and radiation. (Chemo works better in conjunction with radiation so Tom’s docs say)
Prayers from Wisconsin are coming your way.
Go with God and KEEP KICKIN’ THAT cancer. Remember that no one has an expiration date stamped on the bottom of their feet (or on their butt!)
Margaret
Hi Tom,
Thanks for the update. I hope that now that you have the stent in place that your bilirubin levels will continue to fall from here. I don’t know the answer to your question about the level needed to start the regimen again, but I’m sure someone else will.
My best wishes to you,
Gavin
Just got back from Onc. My billirubin is still elavated. Seems it went like this. Normal bilirubin <1 and within a week it goes to 9.8. I then had a stent put in on a Friday. The following Tuesday it goes to 13.6. Then last Friday it drops to 12.4.
Had labs today, so not sure. Since all of this has been happening, I have not been on Chemo, which means the turmor has been growing.
Does anyone have any guess on what the billirubin should be before going on the Gemcitabine/Cisplatin regimen? My onc seems to think it should be less than 1.5 x normal. She said there is not enough data available.
I’m basically ok, just tired most of the time. My weight loss has stopped. I even gained 5 lbs from last week.
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