pamela
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I have already posted on Facebook throughout the day to let people know how Lauren’s procedure went. The whole day went awesome. I am wondering if the nurses got talked to or what. Remember our last ordeal with the mapping. They were all so nice today, practically bending over backwards to please us. They wanted to give Lauren Zofran in her IV for nausea and we told them she had taken that when she first started chemo and it gave her really bad headaches. We told them that she gets Aloxi in her IV now before chemo and it works great. Her poor nurse went on a wild goose chase through the whole hospital looking for this stuff. They only use it in the infusion area where they give chemo, which is where she found some. It is really expensive. Like $1200 for a vial. Yikes. I thought that was so great that they got Lauren what she wanted. I also spoke with her nurse about the exposure last time and she handled that too. They made sure Lauren was covered the whole time and only exposed the area used for doing the embolization. I cannot tell you how much more of a positive experience this time was. Her Radiology Oncologist came out to the waiting room after the procedure and told us everything went super. The Interventional Radiologist kept Lauren laughing in the OR. She was great. Dr. Sonnenday popped in to see her also and even came to see us in the waiting room. I cannot say enough good things about this man. What busy surgeon just stops by to say hi and let us know what he plans on doing. Lauren’s does. He is a special man. I told him it means a lot to all of us for him to take the time and post on here. We are so lucky to have him taking care of Lauren. Lauren is doing ok tonight. She is really tired and the puncture sight is sore. We will be heading home tomorrow and hopefully those tumors are getting a good zap. Thanks for all your prayers. They really helped us today.
Love, -Pam
Dear Wilma,
When I first read your post, I have to admit I was a bit offended. I don’t feel anyone on this site sending encouragement to other fellow CC members should be considered “crap” as you put it. I, for one, give my heart to everyone on this site and care so much. That really hurts me to hear you feel like that. This is a place to come for encouragement and a sense of comeraderie. I hope you were just feeling bad the day you wrote that and didn’t really mean that. This site is a lifesaver for me. I am sorry your poor husband is suffering and you are scared and worried. I know the feeling. My 26 year old daughter has this terrible disease and hasn’t really begun to live her life yet. I am furious about that. That is not fair. I get mad when others complain about having a bad hair day or a bad day at work. Walk for one minute in her shoes to see what it feels like. I understand your frustrations, but please feel happiness for the CC members that are doing well. They give me and I’m sure a lot of others hope. That is all we have.
-Pam
Dear SandT mom,
I am shocked and saddened to hear of Ed’s passing. I spoke with him a few times about radioembolization, and he even asked about sending his scans to U of M to have Lauren’s surgeon check them out. Although I never met your dear husband, I could tell he was a very caring, gentle man. I feel like I have lost a family member and am very heartbroken. May your sweet Ed rest in peace and I send my deepest condolences to you and your family.
Love, -Pam
Janet,
I will be praying that your husband finds relief once the drain is in place. All the best to both of you.
Love, -Pam
Hi Everyone,
We will be leaving this afternoon for Michigan. Theraspheres are tomorrow at noon!! Pray for dramatic results and few side effects. Love to all of you.
-Pam
Hi Helen,
Welcome to this site, but so sorry you had to find us. You weren’t diagnosed very long ago, and I think you could still be in a state of shock or depression over the whole thing. Who wouldn’t. You have every right to not be your happy, upbeat self. Once you have received more treatments and start feeling better, your mood may improve. I know it did with my daughter that has CC. She has become such a strong fighter. She has decided that every day is a gift and she wants to do all she can each day and not waste time. I say she is accomplishing that very well. I would question the pain, though. You may have to try a few different meds to find the one that works best for you. Also, if you are not completely happy with your treatments and care, I would definitely seek another opinion. I think having a great set of doctors and treatments that make you feel better are key. I know it is exhausting to even think about seeing other doctors or traveling a farther distance to see someone else. But, if you find the right facility for you, it makes all the difference. I hope things start to get better for you. I will pray for you to find happiness again. Take care Helen.
Love, -Pam
Thanks for sharing your story, Ken, and welcome to this site. Your story offers hope to all of us. Thank you for that and please keep us posted on how you are doing. Take care.
-Pam
Hi Michelle,
Welcome to this site, but sorry you had to find us. My daughter, Lauren, is 26 and has Cholangiocarcinoma. She had 16 treatments of Gem/Cis and 5-FU before her oncologist stopped the Cisplatin and continues now with just the Gemzar and 5-FU. He wanted to give her a break from the Cisplatin because it is supposedly hard on the kidneys. She has a very large tumor on the right side of her liver and a few small ones on the left. She will be having a procedure called Theraspheres on Wed. We are very hopeful this will kill all the small tumors on the left. Her large tumor is 50% necrotic from the chemo. She has had very minimal side effects and I think that is great given she has been on three chemos at once. The two chemo program she is on now is like nothing to her. She doesn’t feel bad at all. I’m sure it has something to do with her being so young. That is also what makes the situation so heartbreaking. I wish you and your brother all the best. Take care.
-Pam
Maria,
You are so awesome and such an inspiration! Keep up the great work. Best of luck with training and running in the Stockholm Marathon. We are all rooting for you!!
Love, -Pam
Byron,
This proves I have some kind of ESP. I have thought about you from time to time and wondered how you were doing. But today, your name popped into my head and I wondered if there was a way to find out if you were ok. I was afraid to e-mail for fear the worst had happened. Thank God you are ok. Imagine my surprise, when your name popped on the screen on this site. You must’ve received my vibe!!! Happy to hear you had a great time in Hawaii. Great news that you had chemoembolization. All the best to you.
Love, -Pam
Hi ssteiners,
My daughter, Lauren is treated at University of Michigan Hospital. We are so happy with her care and the doctors there. Logistically, it would be a major hike for you to go there, but a lot of people fly to MD Anderson in Texas from all parts of the US and probably the world, so why not Michigan. I know a few people have gotten in touch with U of M and are seeing their doctors at my slight urging. Most of them were fairly close to the facility. We are 3 1/2 hours away, but wouldn’t think of going anywhere else. They have helped Lauren a lot and next week she is having a procedure called Theraspheres to help kill her small tumors in hopes of resecting her large one. When she was first diagnosed, we weren’t offered a lot of promise, but she has really surprised the doctors with how well she is doing. Her positive attitude and fighting spirit make the doctors want to help her even more. I wish you all the best in your search for the best place.
-Pam
Wow Jeff.
You described what it is like to “T.” That’s what makes this site so great. Everyone knows how you are feeling and knows the right thing to say, not the wrong thing like the rest of the world seems to do so often. I hope you can find some peace here with the rest of us. I still have so much hope for everyone and as of right now I don’t ever want to let go of it. It’s what keeps me and many others going. Take care, Jeff and prayers are being said for your dear Mom.
-Pam
Sherry,
I second what Kris said. Lauren owns her car and did at the time she applied. She also had money in her checking and savings. I remember the lady saying that the car did not count. The money she had needed to be under a certain amount and that was it. I don’t remember Lauren having to give a blow by blow of her worst day. She had to list all the doctors she’d seen and a list of medications she was on. I think they verified everything with her doctors. Maybe it is different in every state. It sure sounds like it from our experiences.
I am pretty sure it is against the law to fire someone for having cancer. If it’s not illegal, it sure is heartless. Sherry, I would check into the SSI again. All the best and I will do some digging on the matter.-Pam
