1

(9 replies, posted in In Remembrance)

Dear Terri,

Although I knew this time was coming from your previous posts, it doesn't make the pain and loss any less. I so missed her posts here but understand. I too have been having a hard time coming here at times because it is a reminder of all the friends and wonderful people we have lost. My thoughts and prayers are with you and your family. God Bless,
Jamie

2

(10 replies, posted in General Discussion)

Hi Jtoro,

I was on FOLFOX (5FU, Oxaliplatin and leukovoran) for 6 months before it stopped working. I don't think it was that bad. The worse was having to wear a pump for the 5FU for 2 days... just an inconvenience really. I had some hand and foot syndrome, but not as bad as when I was on Xeloda. The results certainly made it worth being on it. Take care and God Bless,
Jamie D

3

(27 replies, posted in General Discussion)

Prayers being sent for Lauren.... God Bless,

Jamie

I was diagnosed in Oct 2007 and was told I was inoperable and had months. My tumor was 6 inches in my liver. In June 2008 my tumor had shrunk to about 2 inches and I found a wonderful surgeon that was willing to do a resection. Do not give up hope!! God Bless,
Jamie

5

(11 replies, posted in General Discussion)

Susie,
I have been doing acupuncture since shortly after I was diagnosed. It has helped with nausea, pain control and sleep. I also have used some of the herbs and supplements she has recommended. I have also used the little beads for nausea. I dont understand how it works but believe in the results I've gotten. I'm still here 4 years later and believe it is a combination of western and eastern medicine that has helped. Best of luck and hope you get good results. God Bless,
Jamie D

6

(6 replies, posted in General Discussion)

Hi Marion,
My grandaughter is almost 8 months old now. Her name is Luciana, but we call her Lucy. She is the most precious gift. She gives me even more reason to fight for more time. I would love to live long enough for her to have memories of me. Thanks for your response. God Bless,
Jamie

7

(6 replies, posted in General Discussion)

Thank you so much Lainy for your reply and kind words. I wish everyone a very Happy and Blessed Thanksgiving.  I was unable to get chemo today because of my blood counts. Sounds like the Cisplatin is not going to be an option anytime soon. I am frustrated. Praying that the Gemcitabine on its own will do some good.
Happy Thanksgiving again and God Bless,
Jamie D

Hi all,
Sorry I havent been on as much lately but have been having a hard time with the loss of so many good people on here lately, Kris, Rick and Lisa and others have hit me hard. Makes me wonder why I am still here and also makes me lose a little bit of my fight. After Xeloda failed and ended up putting me in the hospital for diarrhea in Dec, I started on Folfox in Jan. Wasn't too bad to take and had some good results first 2 scans. Unforunately the scan in Sept showed growth and the Dr changed me to Irinoteccan. It gave me diarrhea, stomach cramping/pain and more nausea than ever before. Just had 1st scan last week after starting it and everything has grown and also new tumors again. Not good news. Lost my hair for nothing too smile The Dr is putting me back on Gemcitabine (was on it originally with Xeloda with good results and then a year after my resection (2009) when the cancer spread to my lungs with stable to slow growth while on it).  He talked about adding Cisplatin but is concerned that since I am on a downward spiral that it could hasten it. Talked me out of starting it this week and we will discuss it in 2 weeks when I have my 3rd Gemzar infusion. Not sure what to do about it at this point. If this is my last Christmas (first with my grandaughter) I don't want to be sick or in the hospital. My platelets have remaining at 80 or below for months now and red count is trending down to below normal as well as my white count. I don't want to give up, but don't want to end up doing more harm than good and losing precious time with my family. So that's kind of a long update on what's been going on this year with me. I so appreciate this site. It is so full of so many good people. I have checked in, but as I said not as often because it's been hard. Hopefully, I'll get my fight back and will be up to getting back on more. God Bless you all,
Jamie

9

(19 replies, posted in General Discussion)

Hi Hans;
Nice to hear from you especially on Kris's birthday! We all miss her. I got an email from Suzanne over a month ago in response to an email I sent her about the chemo I was starting. She seemed to be hanging in there. Hope this helps! God BLess,
Jamie D

Julie,
I was diagnosed in Oct 2007 with Stage 4 CC and was told I had months. I asked about 5 year survival and basically told it was impossible. I too believe and told them that only God knew when my time would be. I am shooting for 5 years (praying for more) so I can go back to Mayo and let them know that statistics are just that and that there is always a possibility. Keep up your good attitude and glad you are responding so well to the chemo!! Take care and God Bless,
Jamie

11

(8 replies, posted in General Discussion)

I can understand you being nervous. I was too when I had to get mine in January. It really isn't that bad and is alot easier when your veins become so hard to access. It was taking 3-4 tries to get an IV in. I had to get a port because of the chemo combo I started on. Just make sure you rest the first day and dont lift anything. I made the mistake of picking up a heavy package off the front porch when I got home from the hospital. Ouch smile They have a cream you use to numb the area before they use it. It really is easy. The first couple of weeks when it is healing is the only time it has bothered me. Hope this helps and if you have any other questions or need to chat, please feel free to contact me. Take care and God Bless,
Jamie

12

(12 replies, posted in In Remembrance)

Our wonderful Lisa passed away at 4:00 today. Lisa you will be missed dearly. God Bless you my friend. My prayers are for your family as I know you are at peace now. God Bless,
Jamie D

I also was notified of Lisa's condition. My thoughts and prayers are going out to her and her family. These loses are so hard to take. We have lost way too many this year. Lisa, thank you for being my friend and being an inspiration to me. I only hope and pray that my journey has as much grace, dignity and faith as yours has. God Bless you....

14

(8 replies, posted in General Discussion)

Thank you everyone for your kind words and the information. I got the chemo today even though my platelets were well below the minimum. Dr feels it is from very enlarged spleen and liver problems, so wanted to get started on chemo to hopefully shrink some of the multiple tumors in my liver. Had a reaction and ended up with an IV med (atropine) to conteract. Everything was OK after that. Other interesting tidbit was that I was able to convince him to give me the long acting Octreotide that was mentioned on the boards that someone had some positive results from. Since it also is a drug to help diarrhea he agreed to give it as a precaution for side effect from Irinoteccan. I am more hopeful that it may do some "kicking the butt" of this darn cancer, but also hope it prevents the diarrhea. Since I already spent a week in the hospital in Dec for diarrhea (up to 35X/day) I would really not like to have that happen again... Thank you again for all your help and support. God Bless you all,
Jamie

15

(8 replies, posted in General Discussion)

My last scan was not good and will have to stop Folfox and start Irinoteccan on Monday. Anybody have any info on it to share? I've already read past posts from search. I'd especially like to know if anyone had severe diarrhea? The is the side effect they are most concerned about because I ended up in the hospital from Xeloda already. One Dr said they wouldnt even try it on me, but it sounds like it may be the last option for me and I am not ready to give up! My regular Dr wants to try it. Thanks for any info you can share. Take care and God Bless,
Jamie

16

(186 replies, posted in Hospitals)

I was being treated at Mayo in Minnesota but changed last year to Regions Cancer Care Center in St Paul Minnesota. I see Dr Randy Hurley and am very pleased with him.

I was diagnosed at 51 with intrahepatic cc with mets. I will be 55 this month. I just had my 12th dose of Folfox. Has he had a scan to see if the Folfox has shrunk anything? My last 2 scans showed improvement. I think whether to continue chemo is a totally personal decision. Only your husband knows whether it is worth the side effects or not. My first couple of rounds were rough and I ended up in the hospital. They have decreased the dose and gone from every 2 weeks to 3 weeks due to my bone marrow side effects. I'll know next Monday the results from a scan this week to see if it is still doing any good at this level. Can you talk to his Dr about decreasing dose or extending time between treatments? If he hasn't had a scan yet to determine if it is doing any good I also think that would be worth discussing. I also think you need to talk to Dr about the nausea and pain. They should be able to offer other meds to make him comfortable and not nauseated. I take Zofran the day of treatment and 4 days after. If I still am nauseated I have Compazine that I take after that. I can't offer any insight about what happens after treatment stops because I have not experienced it yet, but I am sure others will offer their experiences. My prayers are with you and your family. God Bless,
Jamie D

Hi Patty,
I was on Gemzar/Xeloda for 8 months and the only problem I had from the Xeloda was the hand and foot syndrome. 2 years later I was on Xeloda alone at a higher dose then when I was on the combo. 3 months into it I got exteme diarrhea to the point I was hospitalized for a week. Partly my own fault because I didn't talk to the Dr until it got really bad. I am currently on Folfox and am more aggresive when I get GI symptoms. I have never been on Tarceva so don't know how that would affect side effects. Hope this helps.
Take care and God Bless,
Jamie D

Patti I just wanted to say thanks for posting this info. I made a copy of the papers on octreotide and gave them to my Dr last month. He did some more checking and is ordering a blood test my next visit to evaluate if it may be effective. WooHoo anything that may help is greatly appreciated, especially when it is a non- chemo drug with little side effects. Options are so limited, so it is nice when something new is found. Dr was not aware it was being used for CC so it was great information! This board is so great for so many reasons, including sharing what may be helping. Thanks again and God Bless,
Jamie

20

(13 replies, posted in General Discussion)

Chrissy I am so very sorry for the loss of your beloved husband. I will keep you and your daughter in my prayers. God Bless you and your family.
Jamie D

21

(20 replies, posted in General Discussion)

Jen,
How blessed you Father is to have you!!! Just wanted to let you know that you, your Dad and family are in my prayers. God Bless you,
Jamie

22

(12 replies, posted in General Discussion)

Johanna, I was originally seen by Dr Quevada at Mayo in Oct 07. I did not "click" with him and changed Docs after a couple of months. I was also told that resection was not a possibility and that I was looking at months. I started on Gemzar/Xeloda and had a good response. In June 08 I had a 65% resection of my liver. Most surgeons wouldnt have tried but I was blessed to see Dr. Nagorney and he agreed to give me a chance. I went a year with clear scans but then it came back in my lungs. At that time the oncologist told me 6-9 months. This Oct will be 4 years since I was diagnosed. I have left Mayo and am currently being seen by the original oncologist I saw. I prefer his attitude and beliefs. He knows I dont want to give up yet and want to fight this and he is willing to fight for me. For me one of the most important things was feeling comfortable and trusting of my Dr. It may change along the way and I saw 3 different oncologists at Mayo. Each had their place in my treatment but when I felt I needed something different I wasnt afraid to move on. I am currently on Folfox and had a scan last Thur. Drs nurse called Friday to let me know it was improved but will get details at appt tomorrow. They have had to decrease dose and frequency because of low platelets. Do not give up the fight. My odds were dismal when I was diagnosed and told it was impossible when I asked about 5 year survival. I want to prove them wrong. All they can tell you is about statistics, but we are more than statistics. I have a strong belief system and believe that God is the ultimate healer and will determine how many days I have in this world. If you want anymore info about Mayo or just would like to chat, feel free to message me and I can give you my number or we can email. Also, if you would like to meet when you are at Mayo let me know when you'll be there. I live about an hour north of Mayo. Take care and keep fighting!!
God Bless,
Jamie

I will be praying for her. It is such devastating news for a parent. Last month on our local news they talked about a 17 yr old here in Minnesota that is also battling aggresive liver cancer. So hard to understand....   Please keep us updated on her progress. Again, I will be adding her to my prayers.
Jamie

Boy Missy your post really hit me hard. I feel exatly the same way. In the beginning people called, stopped by and now I hardly hear from anyone. What is the hardest is my own daughter. She turned 20 this summer, got married to a guy she only knew a few months, is expecting a baby any day, which was one of my goals to live long enough to see a grandchild (thought it would be her older brother). She has cut me off entirely the last 4 months. She wont call or visit. I dont know whether I will even be allowed to see my grandchild (in Dec/Jan I was so sick and hospitalized twice, I didnt even know if I would live to see the birth). She talks to her Dad when she wants/needs something but ignores her brother and I. Long story but I think the husband and mother-in-law have alot to do with it. But bottom line is I am her Mother and she shouldnt allow anyone to manipulate her into doing what she is doing. There are no do overs. She cant take back that they wouldnt come for Christmas after they had promised they would. That could be my last and they ruined it for me.. I cried most of the day. Everyone says that she will regret it someday. It hurts more than I can describe but as my son told me, I have to concentrate on the positives and staying alive as long as I can. I can't do that if I am crying and depressed all the time. So I am somewhat at the point where I say to heck with those that choose to not enjoy my company while I am still here. They wont have the opportunity when I am gone. I enjoy those that are here and do care. Focus on the positives and what you do have not what you dont. I'm not saying it is easy, it took me months to get to this point and there are still days that I am disappointed and hurt. WHen I read other daughters taking care of their Mothers and missing them it really hurts. The cancer was really growing when I was at the lowest and now that I have started focusing on my son and the positives I had a more stable scan last time. Stress really does effect you. Even my oncologist said that the situation was having a negative effect on my health. Sorry to ramble on but I guess my point is that we cant control how others act. I feel like others  have posted, that you are there for friends and family when they are in need. Alot of people run from illness or when the going gets tough. Give his parents the benefit of a phone call talking to them honestly. As a parent nothing would keep me away from a sick child, as a child nothing kept me away from taking care of my parents. Unfortunately not everyone feels the same way. Like others have said, they will regret it later.. but that will be there problem. Sorry again for the long post, but this topic really hit me hard. I know exactly what sadness Kevin is feeling. Take care and God Bless,
Jamie

Melanie,
I am not at that point yet so I dont have any advice from experience. As I have been thinking about what my wishes are I would say that comfort is the biggest concern. So pain relief would be one of the things I would discuss. The only other thing I can offer is prayer for you and your husband. I am so sorry that you both are having to go through this... I am sorry that we all are having to deal with CC. Wish they'd find more options for us or a cure. God Bless,
Jamie