December 13, 2010 at 11:00 pm #38276
Hello Christie…I also would like to welcome you to our site. I can’t help you in the decision making progress regarding the various choices of therapies however; I would like to say that it is important for your Mom to gain some weight. Personally, I never much worried about the type of foods may have been good for my husband rather; I encouraged him to eat often and to allow himself those things he enjoyed eating. Additionally we used protein drinks in order to increase the caloric intake.
I hope for you to stay on our board and to keep us posted.
All my best wishes,
MarionDecember 13, 2010 at 5:31 am #38277
Sorry to hear about your mom. Last September ’09, I had a low dose of Gemzar and radiation. I started an 8-cycle of Gem/Cis in August ’10 and should complete it the first of February. I am tolerating the chemo as well as expected. I do get tired by evening, but I am able to do whatever I want to do. I am retired, so I do not work outside of the home. The oncologist said that if this combination did not work, that we would try one of the others that you mentioned. It has lowered my white and red blood cells. I was given iron the last two visits so they are hoping this will help with the fatigue. I have read that too little iron is not good, but that you can have too much and then it is stored and that is not good,
My CT scan (Oct 29) showed that the tumors are stable and I will have another one, the first of January. My CA-19 blood test count is coming down since I started the chemo, but it is still very, very high. But all in all if this combination works, it is well worth the side effects that I have had.
Best wishes to you and your mom.
TheresaDecember 12, 2010 at 6:29 pm #38275hollandgMember
I’m sorry to hear your Mom’s cancer has returned. My first attempt at a whipples in December 2009 failed but the 2nd attempt last May was successful. From January to April I took chemo – Gemzar and oxaliplatin (6×2 weekly cycle). No major side-effects except that I put on a stack of weight from the steroids.
GerryDecember 12, 2010 at 6:35 am #38274cyjchoParticipant
Hello everyone. I am new to this site and I am learning so much already! My mom is 63 years old and was diagnosed with CC in March 2010 and underwent Whipple in May 2010 overseas. Since then, we returned home (TX) and went in for a followup in Sept. Her bilirubin results came out a little high but was retested and seemed to be normal. In addition, her CA 19-9 level was at 33 (normal). However unfortunately, a week before Thanksgiving, she vomited blood and was taken to an emergency room. They did all kinds of tests, but was unsuccessful at finding the culprit. While she was in there, a CT was performed and thats when we found out that the tumors have returned, metastasized to her liver and lymph nodes at stage IV. We received 3 opinions thus far from 3 different oncologists locally. 1) Xeloda alone 2) Gem/Cisplatin & 3) Gem/Oxaliplatin. My mom only weighs 79lbs post surgery so we are greatly concerned with her receiving chemo. So we are currently trying to decide where and what type of chemo my mom wants/can receive. If anyone has any thoughts on any of the options we were given, your inputs would be greatly appreciated.
Everyones posts have been tremendously encouraging and informative. If my mom decides that she is going with Gem+ another med, I will definitely bring up about the heating pad! Mom’s very fragile and gets easily cold.. so heating pad sounds like a great idea.
Hope everyone had a great weekend.
ChristieNovember 18, 2010 at 3:11 am #38273
Kathy….stable has taken on a new meaning for me. It is GOOOD.
I assume that your blood test did not reveal any type of infection and the fever has subsided. I am glad that you are able to take a break from the chemo and therefore will be able to replenish your strength.
MarionNovember 18, 2010 at 1:58 am #38272kathybMember
I saw my oncologist last Wed. but was unable to have chemo because my neutrophils (part of the white blood count) was down to 1.19. They want it to be at least 1.5 for chemo to take place. I’ve also had a couple of evenings where I’ve had a little temp between 100 and 101. Didn’t feel bad, just chilly. My doctor said he just did not want to risk it with me because if I had a problem it would be more trouble with the low count. This really surprised me as it had been two weeks since my last treatment.
Last Friday I had my blood test locally with the plan to have chemo on Monday. Instead of going up, the white count went down a little more. I’ve had the neulasta shot during the regimen, which did bring my count up, but along with it came a not very pleasant side effect. My oncologist suggested we stop chemo now at the end of 7 cycles. He said they actually don’t know if 8 cycles are better than 7 cycles, and it was time to give my body a rest.
The plan is to have an MRI on Dec. 8th to see what happens next. Stable will make me very happy. If it’s not stable, we’ll go from there.
KathyNovember 15, 2010 at 8:43 pm #38271michaelsurvivorParticipant
My hat is off to you for being so pro-active in your Mom’s recovery. That, in itself, is a big deal. I too am 58, and 3 years ago I was operated on for a an advanced Klatskin’s tumor (partial lobectomy and bile duct resection). 3 months after the operation, I had 4 1/2 months of chemo – Gemsar and Eloxitin( one week on, one week off). I was sick and tired most of the time, among other side effects, but I’m sure it’s part of why i’m still here. The other parts, in my opinion, involve attitude, perserverance, nutrition,love, learning all you can(this website is a good place to start), and a good sense of humor. Tough, I know, when you feel like crap all the time. Anyway, I just wanted to let you know there is hope(I’m living proof) and to wish you and your Mom Godspeed in her recovery.
I have lots of helpful hints and will be checking this website periodically, if you have other questions about my experience. Your Mom is lucky to have you. Best Wishes, MichaelNovember 11, 2010 at 4:51 pm #38270
Theresa….good news about the “no new growth.” But, can you take a little snooze during the day? And, congratulations you have passed the half way point with chemo. Take care of yourself.
Hugs and best wishes,
MarionNovember 11, 2010 at 3:32 pm #38269
Just a little update on my Gem/Cis treatment.
A couple of weeks ago, I had a CT scan and saw my UCSF doctor last Friday and had my chemo treatment today at my local oncologist’s office.
Marion, I asked about lowering the dose and the answer I got was that since this dose seems to be working, they did not want to change it for now.
The CT scan showed no shrinkage in the cancer, but it, also, showed no growth or spread. The tumor markers (CA19 and CEA) were both down. Not as low as it was before I started the chemo, again, but they have come down (but they are still “sky-high”). So, I am glad to get all the positive results, I can get.
Today, I am half way through my treatments, twelve more weeks to go.
I am on two weeks on and one week off.
Not sure if I should go back to bed since I have been awake for for 5 hours or just wait until evening.
Devoncat, I am not having the weigh gain with the steroids, but on the day of chemo, I am lucky if I get 4 hours sleep that night.
Best wishes to all of you.
TheresaNovember 5, 2010 at 3:08 pm #38268kavita1Member
I have read the posts above…it is clear you have had experience with the gemzar (aka gemcitibine); thanks for your postings..they are very helpful..especially the heating pad part..we are in Canada and we had to fly for a second opinion to NY because it seemed that all my mom’s doctors weer confused about her diagnosis as well as her management…if anyone else has had liver resection plus chemo and radiation..it would be great to hear from you!
CheersNovember 5, 2010 at 1:51 pm #38267lainyParticipant
Hello Kavita and welcome to our wonderful family. Just a suggestion that if you make your intoduction a new one under Introductions on our first page, more people will see your post. I am afraid that attached to an older post it may get lost in the shuffle. We have a nifty search engine at the top of the page and if you type in anything you are looking for like the Chemo Regime Dr. Goodman is recommending, other posts will pop up that talk about it. Good luck with everything and please keep us posted.November 5, 2010 at 1:22 pm #38266kavita1Member
My mom at age 58 has been recently diagnosed with cholangiocarcinoma, we think the intrahepatic kind. No jaundice, and she had a liver resection this July, she has a bile leak which complicated things, didn’t allow her to eat and resulted in a second surgery in August to take care of her stomach so she could eat. Now her oncologists say she needs radiation and chemo for a close margin, we took her to New York Memorial Sloan Kettering with Dr. Goodman , who was wonderful, who spoke about placing my mom on the chemo regime gemcitiibine IV every other week and oral xeloda. Anyone have any experience with this?
KavitaNovember 3, 2010 at 8:05 pm #38265devoncatParticipant
I put on weight with gem/cis…something like 20 pounds. Gotta love those steroids!
Good luck on your last cycle and cant wait till you get the results.
KrisNovember 3, 2010 at 7:09 pm #38264kathybMember
Chemo was last Wed. It took two tries to get the IV in this time. I usually don’t even feel blood tests anymore, but IV’s hurt!
My neutrophils count (the part of the white blood count they look at – fights infections) was down a tad bit, but I could still have chemo.
I ran a temperature in the evening. It went up to 101.8, took some Tylenol at that point and it went right now. If it wouldn’t have, I would have headed straight for the hospital. This was the same thing that happened a few weeks ago. Strange the temp has only happened 2 times, but both when I only had Gemzar. I felt fine the next day.
No steroids after this treatment but I sort of missed the energy high they gave me. Have not missed the crash that comes after the high.
One of the chemo nurses asked me if I had a wig I have naturally thick hair and have not lost it. But, my face is rounder because of the steroids, and my appetite has not lessened. I’ve gained weight.
Only one more cycle to go – two more chemo treatments. Should be done right before Thanksgiving. My oncologist says we will wait a month to have an MRI. This can be before Christmas or after Christmas, my choice. Have not decided on that.October 23, 2010 at 7:36 pm #38263
Kathy and Rick, being in the same “boat” with you, I am always anxious to hear how you are doing. Even though, my white blood cells were down on Wednesday, I still had the regular dose of Gem/Cis because I will be off a week. It went very smoothly.
Marion, even the port is getting better. At least, now it is better than using my veins.
Kathy, unlike you, last fall when I had the radiation and chemo, I think I took it much better. Could have been because I had more weight, but this time, I am getting fatigued. Last time, I had to have the Neupogen shots, so the shots and being nauseated were the worse part of it. And, too, they cut my chemo dose very low, starting out at 600 down to 200.
This time, I am still on !400 Gem and 40 of Cis.
Kathy, only two more cycles!! That’s great, and we want some good news.
Rick, I hope your treatment went smoothly this week. Like Kathy, I am taking it very well (except getting tired in the evenings) and hope that you won’t experience the side-effects, either.
Let’s have a good week-end and look forward to a good week.
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