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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.
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.
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.
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.
More bumps in the road. Met with onc after Christmas for labwork and discovered my bilirubin was 9.8. A CT Scan done last Friday and show some growth in the tumor. I met with the surgeon yesterday. The result of that was a ERCP done this morning. I’s still not sure when to start chemo. I have an appt with onc this coming monday.
BriansWife- I am being treated at CMC in Charlotte. They have an excellent group of surgeons. I found it interesting that not just the surgeon that did the patching, but also his partners came by to check up on me. Dr. David Iannitti is the surgeon that worked on me. Excellent job. I’ve had the staples removed and have not had any pain at all. Everything seems to be healing good. Hicups cause the most pain, but very minimal. I didn’t realize that you could stop a hiccup in midcycle.
I’m now trying to get my weight under control. I lost 17 lbs. while on Chemo and another 10 while in the hospital.
Next step will be to find out when my Chemo will start up again. Right now, I think my blood counts will be near the lowest due to the last Chemo.
My Onc said probably restart after the holidays. I will meet with Onc after Christmas. It’s kinda tough getting appts during the holidays.
My journey took a big detour last week. Two days after my chemo, I had my wife call 911 due to severe stomach pain. After a CT Scan, I found out I had a hole in my upper intestine. After patching that and a couple days in ICU and 5 days in hospital, I’m home in my own bed and not getting stuck with needles eery 4 hours. The problem they had is chemo destroys the fast growing cells and for the surgery to heal I need the fast growing cells. The plan now is to let me heal over the holidays and revisit the chemo. They are thinking that some of the steriods in the meds I have been taking with the chemo could have had some effect on the intestine.
As i write this, I’m all hooked up getting my treatment. Just finished 1000mg of sodium choloride to flush my kidney. Now taking on the anti nausea premeds. Then comes the Cisplatin, followed by more flushing then the Gemzar. Another long day. I just notice one of the other patients just came in carrying a big cake. Must be someones birthday. We may be singing happy birthday and eating cake in a couple hours.
Evidently last week must have been my low blood week. Thinking back, when I blew my nose in the morning, I had some blood. I also had a small rash. This week, no blood in the morning and the rash is gone. I just reviewed my blood report from yesterday and everything is normal.
I don’t think they slow down over the holidays for infusion. I’m currently scheduled for my 3rd cycle to begin on the Tuesday after Christmas. That is unless they schedule me for the Sir-Sphere. Then I will be off chemo for 2 weeks before the radiation begins.
All of the folks here are so helpful. Constantly asking if we need blanket, pillow, drink.
I’m also fortunate in that my Onc is next door. The Onc nurse usually comes over to check on me.Lalupes, it looks like your sister and I are on the same schedule. My next cycle starts tomorrow. I was a little concerned when I met with my Onc this morning. The results of my CBC last Thursday showed that my platelets were low (80), which meant they would either delay or change my treatment tomorrow. So they stuck me again and did another CBC. From Thursday to today, the platelets increased to 400. All the other checks were also back to normal.
I did find out that I am a good candidate for the Sir-Spheres. So unless things change, I will finish this cycle. Then wait 2 weeks to get the chemo out of my body and get on with the Sir-Spheres. They said the Gemzar hs to be out of the body before the SIRT. They are also checking with the Insurance for coverage.My weight seems to have leveled off. What I have been doing is eating when ever I think about it. Not very much at a time, just constant. I try to drink a Boost in the morning and another in the afternoon. I’m on colesterol medicine, but for now I don’t worry about stuff high in colesterol. I love vanilla milkshakes. One thing I do not care much is for foods high in sodium.
I did notice yesterday that my hair is starting to come out. Not bad yet. I’m going to hold off getting a buzz and see if it just thins or comes out in patches.It’s been a while since my last update. This week was my off week of Gem/Cis. Feels good not to be tired all the time. Was able to take some walks and get a little exercise. I did go see a Interventional Radiologist to talk about a Sir-Sphere. It’s not scheulded yet, but we are talking about January. They want to try and shrink it as soon as they can so it can be removed. The plan is to eventially remove the right side of liver along with bile duct and gall bladder in March/April time frame. They are still after me to eat more and not loose any more weight. I have been eating more this week. Still no hair lose, no nausea. It’s been a couple weeks without a blood test. The next CBC will be Monday.
I just completed my first cycle last week of Gem/Cis. I will probably go thru a couple more cycles before they check for shrinkage. Side effects have not been to bad. I’ve been trying to update my journey as I progress.
It’s been a few days since I have posted any updates on my journey. Not much new happening. Probably ate to much over Thanksgiving, but what the heck, my nurses said eat any thing anywhere any time. I was a little constipated about a week ago, but with the prunes, grapes, liquid I’m ok. Still no nausea which is good.
This is my off week of treatment, so not sure what to expect. I’m mostly just tired. Usually in the morning I feel jittery/nervous.
I have appt with a interventional radiologist this Thursday to discuss a possible chemoembolization after 3-4 cycles of Gemzar/Cis. Removing the tumor and right side of liver is another alternative being considered.Hi Cherbourgh.
I’m beeing treated at CMC in Charlotte. I find it interesting on how they work. I have a Onc that is my direct contact. She has a team of specialists that meet every Monday to discuss things. There is a surgeon that all he does is liver surgery. There is another doc that all he does is UltraSoundEndoscopy. Also there is a Interventional Radiologist that I see. My name comes up every Monday on how things are going, what things to try in near term and further down the road. I just finished my 2nd Gem/Cis treatment yesterday and all went good. They want me to try to eat more smaller meals to keep from loosing weight. May not be a problem tomorrow. Should have turkey and all the trimmings.
Stll no major side effects. Had some mild indegestion last week, but eating less qty and more meals seem to help that. No problems the last 3-4 days.
The 6 hours it takes to receive the treatment seems to take a load out of me. Really bushed when I get home. Still kinda tired today, but I seem to feel better if I am up and doing something.
Now I am off a week and start my 2nd cycle on the 8th of December.
I hope everyone has a super Thanksgiving and forget about this terrible disease for 1 days and can enjoy their families and friends.
Thanks Marion for the input. What I have been trying to do is fill 2 x 16oz bottles of water in AM, 2 more in PM and another 2 at night. Currently the tongue issue is minor. Nothing major, but I will keep the candy man handy. I’m just about finished with Gemzar. What I found last week and the same thing this week is the Gemzar hurts when it goes in. All they did was slow it down and everything is ok. They started it on 500 and slowed it down to 400. I told them to remember that the next time I come in. Looks like I will skip next week and start another cycle again in 2 weeks. From what I can guess my days will be Tuesday.
As far as Turkey goes, we will be spending Turkey day with my daughhter. I requested turkey, dressing and gravey. She’s a good cook. Takes after her mom.
Looks like they are coming to unhook me so I can go home. It’s been a long day. No way am I going to be hungry with all the stuff they have fed me today.
Hopefully this week will go as smooth as last week. If you can call this smooth.
Here it is Tuesday already. I’ve been at infustion for about 4 hours. Started off with blood test. All came out normal. The were checking for WBC, HBG and PLAT. Since they have to watch the kidneys so closely, I had a bunch of saline to start the kidney flushing. After that they added the anti nausea meds to the IV. Finally about an hour ago they started the Cis. After that will be the Gemzar. Should get outa here in about 3 more hours. They were concerned about my losing 5 lbs since last week. As a result my Onc nurse brought me lunch of about 1,000 calaries. Seems like Thanksgiving was a good week to come. Lots of good eats that the nurses fixed. Since the SANCUSO anti-nausea patch worked ok last week, my Onc gave me a prescription for more. It seemed to work since I did not have nausea at all.
I did take the recommendation of eating prunes to assist in keeping me regular. They taste ok, and what the heck, if they work why not.The only thing I have noticed out of ordinary is my tongue was a little raw this morning and I have had a little dry mouth at night time. Still nothing major. I assume my hair will start thinning a little this week.
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