jamie-d

Dear Danielle;
I agree with Marion also. Ask questions and make sure you get an answer you understand. Ask them how can he go home if the nurses wont even let him get up? If he goes to a rehab hospital will they be working on getting him up and building up his strength so he can go home? Again Marion is right. You are only 1 woman and given the circumstances can’t do it all by yourself. I am also worried that he has bed sores. They need to be addressing those aggresively. You can get serious infections that can be life threatening with bed sores so they need to get those cleared up. Certainly not something I’d think you could handle at home by yourself. I find myself getting a little angry that the Drs and social workers have put you in this position without a lot of guidance as far as I’m concerned. Maybe talk to one of his nurses and see if they can suggest anything else or someone else to talk to. I’ll keep you both in my prayers and if there is anything I can do let me know. God Bless,
Jamie

Lady Bug;
Sending lots of good thoughts and prayers your way. I too know what the anxiety can do with an upcoming scan. Last week I couldn’t sleep at all the night before my scan. We’re just going to pray and believe that Dave will have a clean scan. Take care and God Bless,
Jamie

Lisa;
When is your next scan? What are your current meds? I just started back on Gemcitabine and Xeloda this week. I know what you mean about feeling wiped out. I can’t believe the change I feel just since last week. I’m having a hard time just getting myself up to get something to eat. I’m going to pray that there is no progression in your next scan, or better yet I’m gonna ask for some shrinkage! Gonna send good thoughts and prayers your way Lisa.
God Bless,
Jamie

Dear Charlene;
I can’t say I know what you are going through because I am the one with cc and have not lost a spouse. I can only offer my thoughts and prayers for you. I think everyone else had good advice and thoughts. I am heartbroken that your family has not been there for you. I agree that you should try and talk with them and let them know what is going on. You are not alone. I am in Minnesota and if you are anywhere close I’d be happy to give you an in-person hug. You are in my prayers.
God Bless,
Jamie

Barbara;
Let me put my 2 cents in. I agree with everyone that you should get another opinion. I would question both Drs to have them explain their reason for their choice. After I had my resection a year ago I wanted to do 3-6 more months of chemo. The Dr at Mayo said he didnt recommend it. I ended up trying to take it anyway but didnt tolerate it very well due to low blood counts. Last dose was in August. I went back to see the first Oncologist I saw (non Mayo) and he wanted me on chemo. I ended up getting a third opinion in Dec and he said not to also. I ended up not doing anymore chemo and I just found out last week it is back and has spread to my lungs. So I guess my point is that sometimes we need to go with our gut feeling. Maybe it wouldn’t have made a difference in my case but I am still doubting my decision now. I was first told I was inoperable and they did an open and close surgery. I kept praying that maybe I could someday have a resection as I felt that was the best chance for longer survival. I still am grateful that I had the opportunity to have it. I’ve had a fairly good year and have been grateful for each day. I dont think I would still be here if I hadn’t had the resection. I am now going back to the other Dr for his opinion also. So my feeling would be to get several opinions, make sure you get an explanation for what they recommend, for me I pray about it, listen to your own instinct and then make a decision. Best wishes and God Bless,
Jamie

Liz,
I had a resection in June 08 . I was just told last week that my cc had returned and mets to lung and new tumor in liver. I was offered 3 options, do nothing and scan again in 2 months, do one of 2 drugs I was on before (Xeloda and Gemcitabine), or take both again. I asked about radiation, surgery and other options and was told no. I am being treated at Mayo in Minnesota. I opted to take both drugs. I am going to go back to another oncologist that I had seen before to get his opinion as soon as I can get in. I would be happy to share any info I get on options that I learn. I also use a variety of supplements/alternative therapies. I am meeting with the Dr I see for accupuncture/chiropracter next Wed to go over alternative options. If I can help in anyway please let me know. Feel free to email me. God Bless,
Jamie

Hi Violarob;
I was wondering if you could share your protocol with me and history? I just got the news that the cc has returned with a vengence and am looking for some hope. I was diagnosed in Oct 07 and started on Xeloda and Gemczar. The tumor shrank from 15cm to less than 5 and a secondary tumor I had on the colon shrunk and the lymph nodes stopped lighting up. They ended up doing a resection June08 and removed 65% liver, gall bladder, and the tumor near the colon that was encapsulated and another near the duodenum(also encapsulated). Had clear scans until yesterday. Now have mets in both lungs and a 2cm tumor in liver at the resection site. Mayo isn’t offering much hope. I am 52 and need to be around for my kids as long as possible. I live in Minnesota. If you want to email me that would be fine. Thanks for any help, I really appreciate it. God Bless,
Jamie

jamiedinesen@hotmail.com