April 12, 2012 at 7:24 pm #59591
Thanks for the encouragement, and thoughts. Let us know how you do with the CT, too bad its on your b-day, but it will be a good day anyways… happy happy b-day!!
Oh my what a time of things you are having. You are a very strong person. Staying positive for your husband is so important! That seems to keep my husband focused as he looks to me for support, although he is very strong too, but yet a terrible worrier. The running never seems to end does it. Lacrosse is keeping us moving right now. Sounds like you baseball star needs a bit of a rest on that pitching arm!! Continue to stay strong, and never give up hope, because thats what holds us up! Keep me posted on how things are going….you are an inspiration!
In my prayers too!!
~AmyApril 11, 2012 at 4:15 am #59590peggypMember
Welcome to the CC family. My husband was diagnosed Stage IV ICC in August ’08. He had a resection where they removed over 70 percent of his liver, gallbladder, right kidney, part of colon and part of his stomach cavity. In March ’09, he presented with multiple tumors in the part of liver that had been left. He has been treated with Folfox, Gem/Cis and Xeloda. He was also taking Avastin. They did a trial run to see if he would be a candidate for radioembolization, but there was too much leakage into his stomach cavity. He did have a chemoembolization the end of February and is scheduled for another one next week. I think this has taken more out of him than his original resection. He is very weak, stomach aches like crazy, and he has very little appetite. I try to remain positive and hope that he responds better to the next one. I can’t imagine having five kids and having to do all that you do for your husband. We have two kids at home (14 and 9) who are very active in sports. I feel like I am running from one place to the other all the time. I took Kaden to the doctor this morning as he is having some pain in his pitching arm. He fell while playing basketball and hurt same arm. The doctor said that he should not pitch as much or throw as hard because he could damage this arm for life. He’s only 9 and has a game tomorrow night. I’m sure his coaches will love hearing this. I just bought John some Boost drinks today. He drank one and said that it wasn’t bad. I hope he gets his appetite back soon as he, too, has lost some weight. I will keep you and your family in my prayers and hope that your husband will get better each day. Hugs, PeggyP
You and John have something in common; his birthday is April 25th, too.April 11, 2012 at 1:41 am #59589
Most definitely NOT laproscopic, as the 14″ scar proves that point! I haven’t lost any hair yet either and only one day to go for chemo (this Friday). It hasn’t thinned either, but slowed down growth wise and is a bit finer and not as coarse. Gemzar wasn’t bad, only one time did it sting any and only for 3-5 minutes. I’ve done all IV, no port also. I can imagine being a bit tired starting so soon after surgery, I had to wait because of my leaking bile situation and had time to heal up and exercise to get back into shape. I was at the gym moving the weights with the drain tube sticking out of the center of my chest with the little ‘hand grenade’ collecting the bile in my pocket!
I have a CT set for the 20th, this Monday I meet the radiation oncologist, whom we know through our synagogue also. Probably start the radiation some time the last week of April or early May. Great birthday present for me huh? 41 on the 25th of April…April 11, 2012 at 12:43 am #59588
You are a great inspiration. Before I joined this group, I read your posts as our husbands are about the same age. You have so much courage and your husband is lucky to have you. We can do this, keep up focused and never loose hope. My thoughts and prayers are with you
Thanks for your words of experience. I am glad you have stayed with this site, as it must be hard reliving some of this. You too are very strong. I am giving my husband the boost drinks and doing every high nutrition / high calorie food I can think of. He is thin and was in great shape to begin with! Thanks again for the support any other words of wisdom are appreciated.
~AmyApril 11, 2012 at 12:20 am #59587
Thanks for the response! The chemo and radiation have been going ok. Not great, as he has alot of nausea and is very tired, His side is quite painful, but remember he just had surgery and this started only 3 weeks after, so it is all quite fresh. He is working and does alot of walking. The area of radiation is also quite extensive since there was a positive margin and a positive lymph node. All in all though, he never complains and has only lost a few pounds. He is getting IMRT in a tomo machine, so the area is more precise as not to hurt his remaining kidney. They are treating him quite aggressively. The good news is there is just 4 treatments left. The xeloda does not seem to be the problem. He has had no hair loss, just some thinning. The gemzar sounds like it will be much better. I found out today that he wont be getting the cisplatin due to the single kidney. Counts are good. Scans scheduled again for May 8th then Gemzar starting May 15. Keep focused you will do great! Was your surgery laproscopic? My husbands was not.
Keep us posted, any thoughts are so appreciated
~AmyApril 10, 2012 at 3:13 am #59586mlepp0416Participant
You have a huge family now! I consider everyone on this site as part of my family, even though I’ve never ‘met’ anyone of them in person. This site was a lifesaver to me when my husband Tom was diagnosed with this cancer in 2008.
During his journey with CC we hit many bumps in the road as well as twists and turns. He too lost a lot of weight. Tom’s journey ended on 11/20/2011 and he is at peace now. We never gave up the fight and always hoped that he would beat it. Throughout it all, he never worried about himself, he just worried about others.
Keep in mind that your husband needs calories now, more than ever. Get whole milk, peanut butter, high fat content foods, etc. Also, Boost Plus is very good and if he can’t eat ‘food’ he will most likely be able to drink the Boost Plus and that is just like a meal. He needs to keep his weight so that his body can help fight the CC.
I’m very glad you found this site, but at the same time so sorry that you had to find it.
MargaretApril 10, 2012 at 12:31 am #59585peonyMember
Hi Amy, Sorry to hear about your husbands diagnosis. I can’t imagine how difficult all of this must be for your family, especially with 5 children to care for as well.
My husband was also diagnosed in NYC with stage IV Intrahepatic cc in Oct. 2010. He initially recieved gemzar and cisplatin, then gemzar and oxaliplatin and now just avastin and 10 days of radiation to mets in his spine. He’s only 48.
Hopefully you’ll be able to manage the side effects which at times seemed worse than the disease.
My thoughts and prayers are with you and your family.
PeonyApril 9, 2012 at 12:58 pm #59584
I’ve handled the chemo extremely well. No real nausea whatsoever, and the fatigue has been a day or so each week. It was a little bit more this past weekend, but a nap here and there works! I still work out at the gym 3-4 days a week with heavy weights and cardio so all things considered I think I’m handling it OK. Gemzar is about an hour (30 minutes for the steriods and 30 minutes for the Gemzar). Gem/Cis combo is about 4.5-5 hours. Same Gem time, hour for Magnesium/Potassium, hour for Cisplatin, another hour for more Mag/Pot after and then you’re done. My question for you, how was the radiation/Xeloda? That’s what I’m on to next, probably in about 3 weeks or so. Keep the positive attitude and good luck!April 8, 2012 at 11:20 pm #59583
Thank you Nancy for your kind words, with the meaning of this Easter season. I have read about your courageous, strong journey. You give much inspiration. Thank you for staying active with this web site. I will keep everyone posted. Sometimes I feel like I am waiting for the other shoe to drop.
Holding on to hope
~AmyApril 8, 2012 at 1:13 am #59582nancy246Participant
Dear Amy, I am so sorry your husband, you, and your family have had to go through a cancer diagnosis twice. Life really isn’t fair at times. As we celebrate the Easter season once again we are reminded of hope and how it helps us through the most difficult of times. Sending positive, healing thoughts your way. Hugs. NancyApril 7, 2012 at 11:58 pm #59581
Thanks for your response. I read your posts and what a trip you have had! With your chemo treatment, how did you fare? Did you have much nausea, fatigue etc? It seems my husbands treatments are backward from yours as he will be starting the fifth and final week of radiation and xeloda. I will ask the oncologist about the cisplatin in addition to the gemzar. How long was your IV chemo? Just looking for every way to make sure this cancer does not come back. I am so glad you are doing well! Always moving forward, thats the key!! Please let you know what side effects you may have had, Thanks
AmyApril 6, 2012 at 5:51 pm #59580
Welcome! Not that you wanted to join the club, but you’re in with the rest of us now… I am so glad to hear that you guys had such a fast reaction to the initial symptoms and the actual surgery, 6 weeks overall! That is great, I was lucky enough to have an overall turnaround time from initial hospital admission for symptoms to surgery of about 16 days which from what I’ve seen on this site is way fast. I’m just finishing up chemo next Friday and on to radiation with Xeloda for 3-5 weeks, meet the radiation oncologist in 1.5 weeks. You are correct in that the positive attitude is an absolute MUST! Without it, I think any cancer thrives on the negative. Wish you all the best with your husbands treatment and keep us posted!April 4, 2012 at 10:31 pm #59579lainyParticipant
Amy, just one suggestion. If any RX at all upsets your husband you need to call the ONC as there are so many other kinds of things to take. Sometimes it just takes a little hunt and peck. When nausea or anything else interferes it uses up energy that is so needed for other healing.April 4, 2012 at 10:26 pm #59578
How can I thank all of you who have reponded, it is just overwhelming! We don’t have much family, so this is just great!
Lainy- you got it!! exactly how I feel. I make the slightest flinch, face, or get upset in any way and my husband is upside down. He relies on me for strength and knowledge. The car really is my safe haven, and I can come back refreshed. Wow, I am not crazy!! Its just that he is very worried, and does not want leave his family. I reassure him constantly because I feel your mind has to be in the right place to beat this! Thank you for your kind words.
Pam- Much strength to you and your daughter, you are a great mom! I will need to read your posts and see your story. You have to hold on to hope as it is what holds us. I also know the tremendous power of prayer, it helps! Thanks you for your support!
Marion- The chemoradiation is taking quite a toll. It is starting to really wear him out, but he doesn’t complain. I see it in his face, he has lost about 20 pounds (he is great shape to begin with), his eyes are tired. Being so fresh from surgery, and all the radiation, his belly is starting to distend. By the end of the day he is hunched over a bit. The ursodial (actigall) he is taking to thin his bile along with the treatment makes him nauseated, however, he is on his feet working. Thanks so much for asking, and I will keep you posted! ~AmyApril 4, 2012 at 6:51 pm #59577gavinModerator
Yup, normal sure is good!! But please, should you feel the need to complain about anything then you go right ahead and do so. Come here and vent, shout and scream if it helps! We know what you’re going through and we totally understand, so if you want to let off some steam then do so with us here!!!!
And even if you don’t feel like letting of some steam then come here anyway and just post away! Coming here helped me so much and I am sure that it will help you also. We are all here for you.
Best wishes to you and your husband,
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