pamela
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Thanks to all of you for your well wishes. It is nice to have the support of such caring people.
EDH- I am really sorry your husband is not a candidate. He just missed the cut off mark. Boo. He might have been really sick after the actual procedure If he was that sick after the mapping. Bland embolization might be your answer, but if they say it is painful might make me nervous. Usually they tell you that things won’t hurt and they end up really hurting. Lauren said her liver biopsy was the most painful procedure ever, and they told her it wouldn’t hurt at all. So now she always expects that everything will hurt and prepares herself for it. If your husband does go ahead with the bland, I sure would ask for some really good painkillers. I don’t think anyone should suffer with pain and there are so many different drugs out there that doctors can give. As to what you say about the procedure and what happens to the toxins with regard to the bland, I would guess that if the blood supply is cut off, the tumor would just die. Lauren’s surgeon said that if her tumors die, he could go in and scoop them out. We envision a melon baller. Haha. Lauren did really well after her mapping. She was really sore at the puncture sight and had a hard time lifting her leg, but other than that pretty good. She also had chemo the day before the mapping and still was hooked up to her pump with 5-FU during the procedure. Talk about a trooper. She amazes me. She is treated at University of Michigan Hospital. What a top notch facility. We couldn’t be happier with her treatment dealing with her cancer. I wish you and your husband all the best and I hope you find the right treatment for him.
-Pam
I am sure someone will recommend a major cancer center for you. Have your platelets been checked lately? In my daughter’s case, her platelets were back up after a week of rest. I would definitely get to a major cancer center quickly and start whatever treatment they suggest. It really makes me angry that you are made to feel like there is nothing more that can be done. I would certainly high tail it out of that facility. Sometimes you have to be your own advocate and find the best place for you. All the best.
-Pam
Hi EDH,
Welcome to this site. I had not heard of bland embolization. I looked it up and it sounds similar to the procedure my daughter Lauren is having next week. Her procedure is called Theraspheres. Tiny glass beads of radiation are shot into her tumors through an artery in her groin. We are thrilled she is able to have this procedure. It has lots of promise.
Lauren’s platelets always dropped when she was on Cisplatin. I think most people’s do when they are on that chemo drug. It is one of the rougher chemos to handle.
Every night, Lauren dissolves an Ativan in her mouth and sleeps like a baby.
I do not have any knowledge about the hospitals in NYC. I am sure many will voice their opinions.
I have posted in detail about Lauren’s Theraspheres and the mapping procedure she had a few weeks ago. Just look for it under General Discussion. I was not happy with some of her treatment that day and I told all about it. Feel free to ask any questions about anything. We are all here to help each other. Take care and best of luck.
-Pam
Hi Susie,
I am so happy to hear the great news!! I had to look up what an ileus was last time you posted. Learn something new every day. That sounds awful and I pray it doesn’t happen to you again. Now lets get rooty toot tootin’!!
Love you,
-PamHi Vicky,
It’s nice to meet you but not under these circumstances. I am sorry to hear about your Mom. My daughter, Lauren, has CC. She is now on just Gemzar and 5-FU. She was on a combo of Gem/Cis and 5-FU for 6 mos. During that time, she had a hard time keeping her platelets high. The doctor says that is very common with Cisplatin. Now that she is not on Cisplatin, her platelets are fine. We had read somewhere that Gatorade helped with low platelets and it seemed that every time she drank a lot of it her platelets were good. Her doctor would laugh at us every time we told him this. I don’t know if it really worked or it was just a coincidence. I think the main thing that helped was to skip a week and let the platelets build back up. Maybe someone else has a magic potion. Good luck with your Mom’s treatment. I will keep her in my prayers.
Love, -Pam
Dear Biscuit,
Hi and welcome to the site. I cannot tell you how important it is to find a medical facility that is very experienced with Cholangiocarcinoma. I know it seems like such a pain to have to travel a long way, but if a facility can help your Mom, it will be so worth it. We travel over 200 miles each way to what we feel is the best place for our daughter and I am so thankful there is such a place available to us. It does not feel like a burden to us at all. It is just part of our life now. I hope you will seek such a place and do not listen to what doctors say about how much time your Mom has. Only God knows how much time your Mom has, and you have to make the best decisions to help her. We could’ve chosen to take Lauren to a facility close by, but I shudder to think of what might have happened. I’m sorry to be so blunt, but the right treatment is so important. All the best to you and your dear Mother.
-Pam
Hi Katheryn,
Welome to this site!! Sorry you had to find us. Can you tell us more about Patrick like his age, how long ago he was diagnosed, what kind of chemo he is on. Thanks. That will be helpful to a lot of people on here that can offer you advice. Take care.
-Pam
I would write them or call them and plead your case. I would not give up until they said yes. Just keep digging for reasons as to why you think you should have the drug. I also find that being super nice to whomever you are speaking goes a very long way. Take care and good luck.
-Pam
Hi Audrey,
You are probably not going to like what I have to say. This is just my opinion. I believe you should offer your husband a balanced diet and let him have the occasional cup of coffee or bowl of ice cream. I am sure he is invested in the fight as you are. I don’t feel many people would be happy living on a diet of only veggies and whole foods. I know that neither myself nor anyone in my family would go for it. He needs to have a quality of life and if he likes certain foods, then I feel he should be allowed to have them in moderation. Good luck.
-Pam
Thanks Cathy. I am sure it is going to be tough for us, but Lauren is an adult and like the saying goes, “You can’t get blood from a turnip.” She will have COBRA for at least 18months. We will figure out what comes next after that. The hospital bills will be paid little by little. What else do they expect. Lauren doesn’t have a house they can come after. She basically has her disability and that is it. It is funny. Before Lauren had cancer, I would get so upset over the smallest things. Cancer puts everything into perspective. Everything usually turns out ok with regards to insurance, bills, etc. I do not “sweat the small stuff” anymore. Life is too short. Take care.
Love, -Pam
Hi Jenny,
I am sorry you were made to feel that way by your inlaws. I truly believe that if your husband looks good, they don’t really know how sick he is. It’s funny that the person with cancer is the one that puts up a good front to spare everyone else’s feelings. My daughter, Lauren, is the one with cancer. You wouldn’t know it to look at her. She has great color, is not skinny, and acts happy. Her hair is really short and coming back in. That is the only thing that gives her away. I can see when I look in her eyes that she is really scared and sad she probably won’t live to an old age, but to everyone else she hides it well. As her Mom, it breaks my heart. Take care and all the best to you and your dear family.
-Love, -Pam
My daughter is on 5-FU along with Gemcitabine. She was also on Cisplatin up until about a month ago. The 5-FU is delivered through a pump she wears for 48 hours. She handles the two very well. No real side effects. I don’t think it is too rough of a chemo. I can’t tell you about the tumor markers or appetite. Lauren has a good appetite and her markers are normal. She only has tumors in her liver. She has had no hand /foot problems. Hoping and praying for the best for Trevor.
Love, -Pam
