Hello from a frustrated wife
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The surgery isn’t that bad, at least it wasn’t for me. I had six months of chemo right after surgery, and that was more unpleasant. Good luck with the upcoming surgery.
Diana…Look at it as a new beginning. It is great to know that the stents are draining the bile and that your husband is able to undergo the resection. Tons of good wishes are heading your way.
Hugs and love,
MarionMy guy’s scheduled for surgery next Friday, March 2. So we have a little more than a week to prepare for a long stretch of ugliness.
I’m kind of glad there’s a big to-do list before then – we won’t have time to sit around and worry. His family’s doing enough of that for all of us!
Thanks for all your support.Hi Percy,
John was taking the Xeloda twice a day, also. He would take it in the morning and then close to bedtime. He was on a nine day cycle, then off five. He was getting the Avastin every 14 days. He hasn’t had anything since the first of the year because they didn’t want him to take anything until he was tested to see if he would be a candidate for the theraspheres. I guess after he has the chemoembolization on Thursday, we will find out our next step. Maria sent me a message saying that she didn’t have any real side effects. either. She also said that her tumors shrank a great deal and some can’t even be seen now. That’s good news to my ears. Hope you are doing well, PeggyP
Hi, Peggyp,
I know you have mentioned your husband is on Xeloda and Avastin which either each one of them can make your husband very tired. I am on Xeloda,and I have to take a 30min lap during lunch time at work. So I truly understand what you mean about that side effect. Have you asked the oncologist to adjust the dose( how much of the drug) or frequency(how often ) of the medications.
For Xeloda only, twice a day is the frequency I took, but I find out that if I take the Xeloda at lunch time 11 or 1200 and at 8 or 9 pm , it helps me better in controlling the problem of being so tired. It is because by the time the full effect of the Xeloda kicks in , I will be either off at work or in bed .
Just a thought when I saw your post about being tired.
BTW, chemoembolization is also a good palliative treatment for multiple or large tumors inside the liver, most of them will use mitomycin and adriamycin and cisplatin. I had one done but they gave me only mitomycin and adriamycin mixed with gellform type liquid; but if they use the drug eluting beads, then it will be even better. I did not have any side effects after the procedure.
God bless.Hi Diana,
Welcome to the CC family. I know things are pretty overwhelming right now, but since you have a plan of action, hopefully things will calm down. My husband was diagnosed over 3 and a half years ago with Stage IV ICC. He still does as much as he can but tires easily. Just hang in there and be strong for your husband and you’ll be surprised at how much you can do when you have to. This site will give you the info you need plus it’s a good place to visit when you just need to get away from everything. My prayers are with you and your family, PeggyP
Julie, so good to read that your husband is doing so much better! Like you posted so much good news lately! You know how we love the word stable!
Diana, welcome to a great place to share victories and have many people ready to comfort you on the rough days.
My husband (now 52) was diagnosed in May 2010. The GI barely worked in his smallest stent. We have been through two cycles of chemo, with oral/chemo radiation in the middle of them. We are not candidates for surgery, and his tumors (one of which appeared during the 2nd chemo cycle) refuse to shrink.
However, we are currently on a brand new trial drug…so far the tumors are stable after 4 months. No new growth. We have had to get the original stent replaced, but otherwise, right now, he feels very good. His bloodwork is looking awesome, and the doctors are very happy with the way things are going. If this drug keeps the cancer from progressing with no side effects, then we have great hope for our future.
Don’t give up— you will have your ups and downs, but there are getting to be more and more survivors of this cancer. It sounds like you are in a center that understands CC. Keep us informed!
hugs,
JulieDiana,
Been there done that on the Xanax… My wife took 2 during my operation, and had to pop one when the oncologist came in the room at Sloan Kettering and said we would have to do Chemo. She hasn’t taken them in quite a while but is taking Selexa right now on a daily basis (anti anxiety and anti depressant). She said doing accupuncture helped her to be able to sleep at night too. She was taking Ambien at night but didn’t like the effect of that at all. All of our doctors have said to use the meds to help, it isn’t a bad thing and so far it’s working and helping. She just chimed in that you can call her if you want to talk about it, let me know and I’ll pass along the phone number.Hope you get a surgery date soon!
No problems Jim! Feel free to step on my toes anytime at all. Unless at the time you are wearing army type boots, cleats or high heels…….
Best wishes,
Gavin
rhike wrote:Gavin:I am a new member and don’t know how to use this website. I see you have a lot of posts. I just want to introduce myself and post my son’s story.
How can I get in the introduction forum?Rachel
Rachel, when you log on to the site, go to “Introductions” by clicking on it. Then find the label on ht upper right “Post new topic” and click on it. Then just fill in the topic, type away in the large void space below. When finished with your post, click on “Submit reply” at the screen bottom and your done.
Darn, I missed Gavin’s reply. Didn’t mean to step on toes!
Hi Diana,
I had similar experience as your husband. I had jandice and itching so I went to see my primary doctor. She thought I had hepatitis and did some blood work. But she took sooo long to get back to me I went see GI specialist myself. He ordered CT and found that my bile duct was blocked and causing jandice and itching. He placed stent and did brushing on same day. Next day I got a call from him and said biopsy came back positive for carcinoma and refer me to a surgeon. Following week I went to see surgeon for consult. Since I wasn’t getting any relief with stent he wanted me to get MRI. Sure enough they found another mass on my right liver causing bile back up. My bilirubin level was 19. They put another stent. This time I had internal and external(with bag) drain. Few trips to ER due to pain and they ended up changing to softer stent. It week about 2 weeks to bring bilirubin level to 4 which was okay to have surgery. That was past November. With neg. margins and no lymph nodes were involved so they recomm no chemo. So far I feel great. No post op problems.(BTW they took 60% of liver, gb, and bile duct)I wish your husband the best of luck like I had.
LeeAnnDiana, you sound like my dear wife (I’m the patient), especially the Xanax part. You need to take care of yourself as well as your husband. I totally agree with Lisa … this is harder on the caregivers than the patients. Keep in mind this is not a bunch of isolated events, but a process, which may well turn out to be a very long journey. My wife started out wrapped around the axle and stressing way too much. I’m now almost three years from a resection, sort of clean and Janis has calmed down quite a bit. We try not to get too down over the bumps we encounter, nor too high over any good news.
Good luck getting the very best care.
Derin – That does sound very similar to what they have planned for my guy. They’re waiting for his bilirubin level to drop to 7 or lower before they schedule a surgery. If the stents don’t get kinked or fall out and everything keeps draining like it is now, they’re talking about maybe two weeks.
All this time I’ve been wanting things to move faster, but it’ll be nice to have a little normal time to get ready for the ugly ride ahead.
I went to our primary doctor this morning for my own checkup and we spent the whole time talking about him. I left with a prescription for Xanax, for me. Yay…
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