New member – Darlene from Florida
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I like Kellogg ToGo as well as Carnation IB. Whatever tastes best to you.
Make it a goal – don’t go past a faucet without taking a drink.
Whenever I initially went for chemo, my nurse always asked about my bowel movements; quantity, consistency, and color. The last time I had such detailed talks about that was when I was in second grade on the school bus. It’s a guy thing. Sheesh! I didn’t realize there were going to be quizzes.
Are you able to keep your weight up? I’m a minority – I believe if you need to gain weight, if it tastes good, eat it. Lots of protein and calories. Most recommend a more balanced diet. I figured there was time for that after I recovered from the 30+ lost pounds. I’m there now.
CA 19-9 and alkaline phosphatase are not definite for diagnosing CCA. I use them as trends between CT scans.
Duke
Darlene……you might want to consider Biotene mouthwash and gum. Also, are you taking enzymes prior to meal? Additionally, regular bowel movements are important as well. Don’t worry, we talk about this openly. And, drink, drink, drink in order to flush the chemo through your system.
Hugs,
MarionThank you. I am being treated and the Florida Cancer Specailist and research institute at Good Samaritan Hospital in Palm Beach County, FL. I do have pain medication which I take but the pain on these bad days is not really a physical pain. it is more like my stomach has severe gas bubbles that won’t break, it flip flops and then I just have severe difficuly eating for two days. The pain medication takes the edge off but does not get rid of what my stomache is going through for days. I do make sure I try to eat really well when I am feeling good to keep up my strengh because on the bad days I have difficulty eating for at 2-3 days. I think part of that is because I get those mouth sores and everything I eat just tastes absolutely horrible. Thanks for the advise I think I will get the Carnation Instant breakfast. Those I would probably like because I have tried the already made nutrition drinks and they just taste terrible.
Dear DMiller, welcome to the best place to be for CC support! I am sorry you had to find us but glad you did. There may be some kind of pain control your ONC can give you for the times that the pain gets so bad. I would suggest as far as the eating goes that you start “grazing” all day instead of sitting down to meals. Little bits at a time. You can also try the nutritional shakes like Carnation Instant Breakfast which can be taken instead of a meal. I used to blend in a banana with the vanilla shake and my husband loved them. May I ask where you are being treated? Now on the hopeful side, we have had quite a few members who started out as you have and ended up able to have SURGERY, which is our favorite word. Stay strong and I wish you the very best and please keep us posted.
I had severe stomach pains and went to the emergency room. After several tests I was told that I had a mass in my stomach and I should go see a surgeon. Well I thought it would be best to go see my physician and after many tests and a biopsy I was diagnosed in May with Intrahepatic CC. The tumor was on section 4 and 5 of the liver and was too big at this time to remove so right now it is unresectable. You could have floored me. I have always had stomach problems (IBS, Diverticulosis, Cholitis) but this is not something I would have ever thought of. I even had a scan last april and nothing was there. My surgeon immediately put a port in me and walked me over to the Oncologiist and Radiologist to get everything set up. My Oncologist was very upset that I started backwords. Instead of started with an Oncologist I started with a Surgeon. He was upset that I should have been to see him weeks before I actually got there.
I am currently doing chemo 2 weeks on 1 week off with Cisplatine and Gemzar. My surgeon seems to think that after doing chemo to shrink it she will be able to do surgery. That is what I pray for but after reading so much about this type of cancer I don’t know. I have to say my tumor markers have been low, my blood work has been good and not too many of the side effects except the eating and loss of weight. My stomach gets full very fast.
I have to say that the chemo is dreadful. The first day I’m fine, the second tired, the third chemo fuzzy brain and the fourth, fifth and sixth day I have the most severe stomach pains that I can’t take it. Sometimes I don’t know how I will live through this. Maybe by the grace of god. I am so tired of being sick from the chemo but I know I have to do it. I am still working only taking off for my chemo day and sometimes that fourth day when my stomach hurts so bad I can barely get out of bed.
I am going for a scan on Sept 2 and meet with the Dr and do treament on the 4 to see if the tumor has responded to the chemo. I may also do some type of radiation in the future. I just pray for everyone that is going through this.
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