suzannegm
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Hi Kris,
So happy to know there is so much hope on my horizon. I sure hope you make it back to South Carolina. My family is in Easley. I believe you have had some contact with my sister, Snoopy (Terri). It’s beautiful here right now. It was 52 deg f. this morning and will be 82 deg f. during the day. Should be in the 70 deg range during the day by the time you make it to SC. Keep going!Hi Kris,
I was having gas and smelly bm’s. My nutritionist suggested buying Danactive drinkable yogurt (it’s a 3 oz. tiny bottle). I drink 1 a day. It will balance the floura (sp?) in your digestive tract. It’s done wonders for me. My gas wasn’t painful, just constant. Now it’s more “normal”. Plus the smell is gone. Sorry to be a bit gross, but this was a problem for me. But the Danactive made a big difference. I got the pomegranite/berry flavor. Good luck.Hi Terry,
Sorry to hear about your tough time. I was diagnosed in July 2008, and am 43 years old. I’ve recently started chemo (finished rount 1 of gemcitibine(gemzar)/cisplatin). Hopefully it is working. My side effects have been very mild. This site is a great place for information. Stay focused on what you need to do. My family has been a great support and this website has helped so much also. I hope you find the support as helpful as I have.Hi Joyce – Sorry to freak out on you. I’m still learning how to deal with this thing.
You still have a good attitude, and I know that will help Butch. Thank you for easing my mind.Hi Sophie,
My oncologist prescribed Remeron (30mg) for me. It’s working for me so far, at least I’m not weepy all the time. I do feel more like myself. Also it is helping to stimulate my appetite.
I’m currently on a chemo cocktail of gemzar and cisplatin. I haven’t had any adverse reaction with the Remeron (that I am aware of).
Hope this is some help.Hi Joyce,
When was your husband diagnosed? Is intrahepetic CC more aggressive than extrahepetic? Does this mean I will go downhill fast and need hospice soon also?Hi Karen,
I’m told that with any radiation right now, due to the size of the tumors, that too much of the healthy liver tissue would be damaged. So that’s why the chemo to start off with.
We have a local hospital that has cyberknife, but my main oncologist does not practice at that particular hospital.
Once I get my latest CT/MRI results, I’m going to send my records to MD Anderson and see what they have to say. Not that I am doubting my oncologist and his methods, but I just want to make sure 110% that I am on the right track and doing all I can.
Thanks for the info.Karen and Darla. Thank you both for your support. Karen, I presented much like your husband, some discomfort in my stomach area that I thought could be an ulcer or my gall bladder. But other than that, no other symptoms.
Karen, where did the cancer initially come from, also his liver or only the bile ducts? I have been told that due to the size of my tumors, cyberknife or any other radiation is not yet an option. Hence the chemo to shrink them.
I’m needing to put back on the weight I lost after surgery, but other than that and some mild tightness around my bra line (right under my boobs) I’m doing ok. Still recuping from the surgery too but I don’t count that.
Thanks for your thoughts.Hi Stacie,
I would love to have some brochures, and I sent you e-mail but it was returned. I double checked the address. Do you have an alternate address I could try?Hi Mercedes,
Glad I could be of some help to you. Where are you and your Mum located? Here in the USA?
I do agree that there is a definate correlation between inactivity and fatigue. I am trying to get more active as my energy level allows. I am now 5 1/2 weeks since my unsuccessful surgery to attempt liver resection. Sometimes it may only be a walk or two inside the house, but with the beautiful fall weather here in Georgia I want to get outside more. I am only just this week able to drive again, so I will be venturing out of the house more, but not too far.
Keep your Mum moving!Hi Lisa,
Xeloda was not ever mentioned to me by my doctors. Wonder what the difference between it and cisplatin is?Hi Lainy – I guess I’m jumping on the bandwagon a bit late. Is there a form letter you are doing that I can add my name to?
Hi Violarob – I haven’t hear of Tarceva. What is that? The cancer center that is administering my chemo, under direction from Dr. Kauh at Emory Winship Cancer Center in Atlanta, has put me on an extensive anti-nausea med regimine. I am so easily nauseated under normal circumstances (motion sickness, etc.) , so I didn’t want to take any chances with chemo-related nausea. The first 2 days after chemo with cisplatin and gemzar, I am on Emend, ABH, and Zofran. With Compazine and Atavan for breakthrough nausea. The meds then gradually taper off with days 3, 4, and 5. I only took one pill on day 4. So far, day 5 has been nausea free. On day 2 I was completely wiped out and slept most of the day. I chalked this up to the meds, but there could be some chemo fatigue in there too I guess, even this early. I have not been given decadron (unless it’s the emend).
I sure hope things continue this way as the weeks go by, and my experience will be similar to yours (hope, hope, hope).Hi Mercedes –
Here is my regimine, which is the same as your Mums’:
week 1: cisplatin & gemzar
week 2: gemzar only
week 3: off
then start the whole thing again. I’m not sure if this is standard treatment for this crazy cancer. I’m new myself. Only diagnosed in mid-July of this year.
I’ve had no hiccups yet, more than normal. They keep telling me my hair will only thin, not completely fall out. But if it does all fall out, I know it will be tough but I can take it. Please tell your Mum to not despair about her hair, it will grow back. My brother went through chemo and knew he was going to lose his hair. He took the bull by the horns and had it shaved before it started to fall out. If it looks like I too will lose mine, my husband is already standing by with the electric clippers. I’m going to take control.Well, here I am. Day 4 after my first chemo treatment. Yesterday I thought I was going to crawl out of my skin. I guess that’s the anti-nausea meds working their way out of my system (hopefully the cisplatin and gemzar are working their magic on me).
Today has been a good day. I had some energy. I actually washed a load of clothes and made pasta salad for dinner. Also had some friends over and watched a movie.
It’s the first day in many weeks that I’ve felt like the old ‘Suzanne’, except thinner. I wouldn’t mind putting on about 10 more pounds. I haven’t wished for that since, well, since never!
This Friday I get a dose of gemzar. Hopefully the side effects will be mild so that I can travel to help celebrate my Mother’s birthday and also my youngest nephew. We’ll see.
What side effects has anyone experienced with gemzar? Mild, medium, extreme?
