pamela
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Hi Holly,
Welcome to this site and I am very sorry you had to find us. I don’t think there are any set answers for what you have asked. It depends on the oncologist and what they feel is best for you. My daughter, Lauren gets scans every three months usually. While undergoing chemo, Lauren has had several tumors disappear. She also had a radioembolization that may have helped as well, but another tumor showed up after it as well. Everyone reacts differently to different treatments. It is up to a trained professional to decide what is best for you. I wish you all the best and if you have any other questions I would be happy to answer them from experiences with Lauren. All the best to you.
-Pam
Hi Amy,
That is awesome that your dad is feeling great. From my daughter, Lauren’s experience with Gem/Cis, she had very mild side effects compared to many. She would feel tired and achy for a few days and then be fine. She was also on 5FU with the Gem/Cis. The main concern her doctor had with her was low platelets fron the Cisplatin. She also lost her hair. I hope your dad continues to feel well. Chemo is cumulative, so each time he has it he might feel a little worse.
I have never heard of hedgeapple. What is it and where do you get it? You might want to ask your dad’s oncologist about it. Lauren’s doctor was very firm on what and what not she was allowed to have in the case of supplements or weird foods. I am just the mom of a daughter with cancer, so anything I have said is purely from our experiences. Good luck to your Dad.
-Pam
Hi Rachael,
I don’t know anything about the Whipple other than I remember hearing about it on Grey’s Anatomy and that people on this site have had it done. I would just like to say I am sorry that you have been through so much and at such a young age. My daughter, Lauren has CC and she is only 26. I will pray that you will have a successful Whipple and full recovery. All the best to you.
-Pam
Hi mafoster,
I had asked Percy for a list of all chemos used for CC and he was kind enough to do it. It is listed under the Forum called Chemotherapy. The topic is Systemic Chemotherapy in General for Cholangiocarcinoma patient by PCL. I hope it helps.
-Pam
Hi Lainy and Alla,
I found it also under the spelling Brioschi. It comes in a blue bottle, so I think it is the same thing. I think my Dad took it when I was little because I remember it from long ago.
-Pam
Hi mafoster,
I will tell you how my daughter has fared with the drugs she has taken that you listed. The ones I do not talk about were never taken by her. Everyone reacts differently to these drugs, so just letting you know how she reacted to them.Hydrocodone- She feels it is not very effective alone, but used with Morphine it can be effective for pain. Her pain is not as severe now so she only takes long acting Morphine 2X daily and fast acting Morphine for any breakthrough pain maybe once or twice a week.
Zofran- Gave her migraine like headaches. She takes Compazine and Ativan for nausea and they both work well. Ativan is also for anxiety.
I would let your Dad eat whatever he is hungry for, no matter how much he does or doesn’t eat. After Lauren has chemo, she likes bland comfort food like chicken noodle soup, creamed chicken, rice, mashed potatoes, oatmeal. She also has a little trick that if she gets nauseous, she chews spearmint gum and it usually settles her stomach.
I hope this helps. My best to you and your Dad.
-Pam
Hi Liz,
I would like to welcome you to this site and tell you that I am sorry you had to find us. I am also sorry that I cannot suggest a place for a 2nd opinion in Cali since we live in Ohio. We do go to a wonderful place, University of Michigan Hospital for my daughter’s care. Once you find the right place, you will know because you will see that the doctors really want to help and have lots of experience with CC. Like Gavin said, Marion is the one who knows her hospitals in California and everywhere else for that matter! I’m sure she will be along to help real soon. Feel free to ask any questions you have. Someone will almost always be able to answer. I wish you and Josi all the best and I hope to speak with you again.
-Pam
Hi LeeAnn,
Any news you hear, that is not what you are expecting can be disappointing. I remember the last time Lauren had scans, there was only small amounts of shrinkage. Everyone was thrilled except Lauren, including her oncologist who I have never seen get that excited. You would have thought she had ten new tumors by her reaction! So I, along with many others understand where you are coming from. Try not to dwell too much and think positively to the future. Sending hugs and support your way.
Love, -Pam
Dear Willow,
You are so welcome and I hope to talk with you again.
Hi Notdoneyet,
I believe Percy did some investigating about liver flukes and said not to eat sushi in the US that comes from Vietnam. The weird thing about this is my oldest daughter and son both love sushi and eat it any chance they get, yet my daughter Lauren, who has CC would never dream of touching the stuff. Go figure.
Hi mafoster,
I would like to welcome you to this site, but I am so sorry to hear about your Dad. Many people on this site are treated at MDA. Your Dad is being treated at one of the best places. This is all still fairly new to you and I remember all too well what it feels like when you first find out. My daughter, Lauren who is now 26 was diagnosed with CC in Aug. 2011. She has been on chemo since then and feels better today than she did back then. We are all one big family on this site and someone is always available to answer questions, give advice, lend a shoulder to cry on, or listen if you just need to talk. I hope chemo will make your Dad feel better and don’t be afraid to tell his doctor about his appetite loss and pain if you feel his meds aren’t helping. Take care and all the best to you and your Dad.
-Pam
Hi LeeAnn,
Try and not let the CA 19-9 test make you that upset. My daughter, Lauren’s oncologist says he looks more at scan results and what is going on rather than that test. Hers goes up and down all the time. If you worry too much, you will make yourself sick. That is good if you don’t get side effects from chemo. That means you are handling it well. Lauren doesn’t have near the side effects most people have from chemo, but she has had a great deal of shrinkage in her tumors. I know it is hard to not freak out about stuff, but please try to relax. Scans will tell what is going on soon enough. If you are not happy with your treatment, why not get a 2nd opinion to put your mind at ease. I am hoping and praying that you have great scans and a lot of shrinkage. Take care.
Love, -Pam
Darla,
I hope you get good scan results. I know this can be such a nervewracking time. Also, I would like to welcome you to this site. I hope to talk with you more in the future. All the best.
-Pam
Hi Willow,
I wanted to welcome you to this site. Sorry you had to find us. My daughter, Lauren is the one with CC. Hers is also intrahepatic. She will not come on this site either and doesn’t want to hear the bad stuff, only the positive. That is her way of coping and I respect that. If she ever has a question, she knows I will answer truthfully. I read everything I can get my hands on, even if it is upsetting. I find the more I read what others go through makes me stronger and more prepared for what Lauren may have to face, although it is so heartbreaking at times. I wish everyone could get better and live wonderful lives. I think it is awesome that you are taking such an active role to help your sister. I wish you both all the best.
Love, -Pam
Lynn,
I am glad you and George will be at home with help. I hope George will be more comfortable and be able to enjoy time on the porch. Thanks for letting us know about things, Lainy. I am sure Teddy is so proud of how much you help people. You are such a Godsend.
Love, -Pam
Susie,
Have a great time in Disney!! I don’t thinka scanxiety can be avoided, but I do wish you all the best with your scans. Happy Birthday as well! It is awesome you were able to have a resection and are cancer free, but that doesn’t mean you can’t be sad from time to time about how your life was before all this. I think it is perfectly natural as long as you don’t dwell on it all the time. Take care and enjoy life!!
Love, -Pam
