Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Oh Donna, your email brought tears to my eyes and pain to my heart. How brave you are! I have read your emails and been so encouraged by the way you and Rick have fought this disease. Since I have a son named Rick, who is named after my brother --who has CC, it breaks my heart. I haven't written much about my brother lately. So here's an update. Went south to see him in hospital in Lexington, KY. He had severe diarrhea, dehydration, fevers etc. after radiation (20) and Xeloda/Oxilplatin (4); severe hand/food syndrome, mouth sores--you name it. Was in hospital for 6 days and is now home trying to get his strength back. Went to regular family doctor on Friday, who asked if he was on antibotics for a bacterial infection. He said no, he thought all tests came back negative! He is now on antibotics and got a B12 shot which immediately made him feel better! Can you believe they would release him and not tell him he had an infection? You really have to double check everything! On Monday, 3/15, he will finish the radiation (5-7 more treatments on the tumor bed) and then he will wait a month and have a PET. He said today that since they just about killed him--he was sure they killed all the cancer cells in his body! One thing you gotta do is keep your humor with this disease. I pray for everyone on this board to have good days and be strong. Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Oh Donna, your email brought tears to my eyes and pain to my heart. How brave you are! I have read your emails and been so encouraged by the way you and Rick have fought this disease. Since I have a son named Rick, who is named after my brother --who has CC, it breaks my heart. I haven't written much about my brother lately. So here's an update. Went south to see him in hospital in Lexington, KY. He had severe diarrhea, dehydration, fevers etc. after radiation (20) and Xeloda/Oxilplatin (4); severe hand/food syndrome, mouth sores--you name it. Was in hospital for 6 days and is now home trying to get his strength back. Went to regular family doctor on Friday, who asked if he was on antibotics for a bacterial infection. He said no, he thought all tests came back negative! He is now on antibotics and got a B12 shot which immediately made him feel better! Can you believe they would release him and not tell him he had an infection? You really have to double check everything! On Monday, 3/15, he will finish the radiation (5-7 more treatments on the tumor bed) and then he will wait a month and have a PET. He said today that since they just about killed him--he was sure they killed all the cancer cells in his body! One thing you gotta do is keep your humor with this disease. I pray for everyone on this board to have good days and be strong. Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Donna, A special hug and an extra prayer for you and Rick! You are such an inspiration!Please know that I'm thinking of you and praying that God will give you more good days to share! Hugs & Prayers, -- In colon_cancer_support , " Donna Sisco " <cncrsps2002@y...> wrote: > Rick is still feeling about the same. He did have a " good day " > yesterday ............ talked in paragraphs yesterday morning for > the first time in 2 weeks ........ didn't take any naps all day (as > opposed to sleeping half of the time). However, he feels bad again > today. He has now developed " oral thrush " ...... so after figuring > out that's what it was (through the internet, of course) I called a > close friend that's a dentist and had him call in some Nystatin Oral > Rinse for it. I'll be picking it up and getting him started on that > this afternoon. The hiccup spasms are still there, but not near as > harsh as they were before the Thorazine. He's only taking 12.5 mgs > a day ..... but that seems to be enough to help. > > As we've all said here so many times ....only God knows how long > anyone survives this disease. And upon diagnosis in Sept of 2002 > they verbally gave Rick 1-2 years ...... but truly expected no more > than 6 months. Now in our 18th month ) ........ it's quite > obvious they aren't always close on their guess. They now say " no > more than 4-6 months ... could be as little as two ..... even with > the radiation. By now you all probably know I'm quite an > optimist ) ..... but I'm also a realist. Even I won't be > surprised if they are right this time. It isn't that I don't think > there's a chance of shrinking and/or killling this brain tumor, it's > more the fact that his body now has so much tumor burden that it > seems to be more than any human body can continue to fight > indefinitely. I believe his body is terribly tired and slowly being > taken over, and may not have enough left to fight with. In spite of > that, we are going to try to restart chemo next week (adding Erbitux > with it) and let his body and God decide. He only has one radiation > treatment left, so maybe not having that " drain " on his body will > help him to slowly regain some of his strength. Either way, I am > thankful that I can be here at home with him trying to make each day > a little brighter. > > Don't worry, we aren't giving up ....... but I am at peace with > whatever is in store for Rick and I ........ and while we continue > to use every tool available to fight this, I totally entrust God > with our future. It is with the knowledge that his will is always > best that I am able to have peace with it all. I hope each of you > are as blessed as I am .......... and I hope this day is better than > one before. > > Kindest Regards, > Donna S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Donna, A special hug and an extra prayer for you and Rick! You are such an inspiration!Please know that I'm thinking of you and praying that God will give you more good days to share! Hugs & Prayers, -- In colon_cancer_support , " Donna Sisco " <cncrsps2002@y...> wrote: > Rick is still feeling about the same. He did have a " good day " > yesterday ............ talked in paragraphs yesterday morning for > the first time in 2 weeks ........ didn't take any naps all day (as > opposed to sleeping half of the time). However, he feels bad again > today. He has now developed " oral thrush " ...... so after figuring > out that's what it was (through the internet, of course) I called a > close friend that's a dentist and had him call in some Nystatin Oral > Rinse for it. I'll be picking it up and getting him started on that > this afternoon. The hiccup spasms are still there, but not near as > harsh as they were before the Thorazine. He's only taking 12.5 mgs > a day ..... but that seems to be enough to help. > > As we've all said here so many times ....only God knows how long > anyone survives this disease. And upon diagnosis in Sept of 2002 > they verbally gave Rick 1-2 years ...... but truly expected no more > than 6 months. Now in our 18th month ) ........ it's quite > obvious they aren't always close on their guess. They now say " no > more than 4-6 months ... could be as little as two ..... even with > the radiation. By now you all probably know I'm quite an > optimist ) ..... but I'm also a realist. Even I won't be > surprised if they are right this time. It isn't that I don't think > there's a chance of shrinking and/or killling this brain tumor, it's > more the fact that his body now has so much tumor burden that it > seems to be more than any human body can continue to fight > indefinitely. I believe his body is terribly tired and slowly being > taken over, and may not have enough left to fight with. In spite of > that, we are going to try to restart chemo next week (adding Erbitux > with it) and let his body and God decide. He only has one radiation > treatment left, so maybe not having that " drain " on his body will > help him to slowly regain some of his strength. Either way, I am > thankful that I can be here at home with him trying to make each day > a little brighter. > > Don't worry, we aren't giving up ....... but I am at peace with > whatever is in store for Rick and I ........ and while we continue > to use every tool available to fight this, I totally entrust God > with our future. It is with the knowledge that his will is always > best that I am able to have peace with it all. I hope each of you > are as blessed as I am .......... and I hope this day is better than > one before. > > Kindest Regards, > Donna S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Donna- You and Rick certainly have set the example in fighting this disease with vigor and optimism. I am so hoping / praying that things turn around soon for the both of you. As you say, with radiation nearing completion and the positive test response for Erbitux, you certainly have reason for hope. I was browsing hiccups on Medline. Seems if thorazine stops helping enough or causes too many side effects, that some people have been giving gabapentin, an antiepilepsy drug with fairly good sucess. Just a thought. Best wishes, Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Donna: I just wanted to let you know that I have been reading your posts and have been continuing to think and pray for both you and Rick, but haven't had time to write. You have had such a roller coaster ride. I hope that things will start to look up after he starts the Erbitux. There have been so many good things said about it. You really have been amazing, keeping up with all of your thoughtful posts and replies, despite your own difficulties. You are truly an inspiration to everyone. All the best, Amie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2004 Report Share Posted March 13, 2004 Donna: I just wanted to let you know that I have been reading your posts and have been continuing to think and pray for both you and Rick, but haven't had time to write. You have had such a roller coaster ride. I hope that things will start to look up after he starts the Erbitux. There have been so many good things said about it. You really have been amazing, keeping up with all of your thoughtful posts and replies, despite your own difficulties. You are truly an inspiration to everyone. All the best, Amie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 It sounds as if Rick might just turn this around. That will be my prayer. Hang in there Donna you two are amazing Narice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 It sounds as if Rick might just turn this around. That will be my prayer. Hang in there Donna you two are amazing Narice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 Donna: you are such a positive person,and this is the season of miracles. You are right,God does know and in his wisdom sometimes he chooses a path different from the one we might want.If Rick is not suffereing that much,I hope the road is clear, long and straight. If not just as Christ came,suffered and died,only to rise again, then whatever does happen you have done everthing that could possibly be done. Put your hand in the hand of the lord and his peace will be with you. God Bless you both..you are such an inspiration..SO much like . Incredible/ Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2004 Report Share Posted March 14, 2004 Donna: you are such a positive person,and this is the season of miracles. You are right,God does know and in his wisdom sometimes he chooses a path different from the one we might want.If Rick is not suffereing that much,I hope the road is clear, long and straight. If not just as Christ came,suffered and died,only to rise again, then whatever does happen you have done everthing that could possibly be done. Put your hand in the hand of the lord and his peace will be with you. God Bless you both..you are such an inspiration..SO much like . Incredible/ Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 Hang tough...Sometimes it takes longer than other times to get a positive response. You are always so upbeat,and how Rick can possibly work is a miracle in itself. Did you discuss the cyberknife with your Dr? We had a friend who has a sister who went in the hopst early AM and let that night a whole new person..A real miracle. I don't know if you read the poem Flipper had on a few posts back,but I read it. I bawled,sent it to a friend and thought well God..let us know..He carries us through a lot and we have learned to share the load. So come on scream.rant,rave,cry and then put on your happy face,let that inner peace out and you gus will make it. best to you bth..lots of prayers,positive thoughts and hugs Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 Hang tough...Sometimes it takes longer than other times to get a positive response. You are always so upbeat,and how Rick can possibly work is a miracle in itself. Did you discuss the cyberknife with your Dr? We had a friend who has a sister who went in the hopst early AM and let that night a whole new person..A real miracle. I don't know if you read the poem Flipper had on a few posts back,but I read it. I bawled,sent it to a friend and thought well God..let us know..He carries us through a lot and we have learned to share the load. So come on scream.rant,rave,cry and then put on your happy face,let that inner peace out and you gus will make it. best to you bth..lots of prayers,positive thoughts and hugs Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 Donna, You and Rick are in my thoughts and prayers. I do hope he will feel better; he has fought so gallantly as have you. Sharon > Rick had his brain MRI today and, as always, I picked up a copy of > the results. Haven't talked with the Onc yet, but I will on > Monday. Basically, the tumor has " very slight decrease in size " > and " there is slightly less associated vasogenic edema " . Although > we're thankful that there was no growth and no other lesions ....... > we were hoping that at least the swelling would be gone. More than > likely the Onc will have to increase Rick's Decadron (steroids) to > try to reduce that swelling. The Decadron makes Rick feel bad, > makes him have steroid-induced diabetes (requiring insulin shots 4 > times daily) and he's beginning to have the " moon face " look that > these type of steroids bring on. But most importantly ...... he is > feeling really bad. He did manage to work about 4-5 hours a day for > about three days this week ...... but has felt very bad today. For > some reason his heart rate seems to be staying at about 100-120 > beats per minute and during the night he gets up about once an hour > to pee ....... so he has trouble resting. He's on so many drugs now > that it's hard to tell what is side effects and what is symptoms > from the disease itself. I think I need to go talk with the Onc > (alone) and find out under what conditions I should be calling him > to make him aware of things. I haven't called him about the rapid > heart rate ....... because it seems lately I'm calling about > something every week. It's no wonder Rick is exhausted ...... with > his heart racing like that it's as if he's doing a light workout 24 > hours a day! > > We're just trying to hang in there and deal with it ........ and > still fighting with all our might. I have to tell you > though ........ Rick's body (and mind, for that matter) is getting > very tired and worn from feeling so bad over the last 8 weeks, all > the harsh drugs, the whole brain radiation treatments, and from the > 18 months of chemo and battling. Only God knows what the weeks and > months ahead hold for us ......... but I know that he will give us > the strength to endure ..... whatever his will may be for Rick. > Right now I just wish he could be more comfortable. That Decadron > usually makes people feel " suddenly better " .... even if it's a > false sense of what's really happening in their body ....... but > Rick isn't that fortunate ....... it happens to make him feel bad. > > OK ...... that's enough " woe is me " ......... we have been so > blessed over the last 18 months to have Rick feeling so good ....... > I guess we shouldn't be surprised that there has to be a decline as > this disease progresses. Thanks to all of my friends on this board > for all your support and encouragement .......... you guys are, and > have always been, the BEST!!!!! ) > > S T I L L Hanging in There!!!!!! > Donna Sisco > S/O Rick, 50, Arkansas > 09/19/02 - Diag. Stage IV Colon Cancer with 6 of 6 Pos. Nodes and > 60%+ Tumor Burden in Liver > 09/24/02 - 10cm Tumor removed from Colon > 10/22/02 - Began CPT-11/5FU/LV Chemo - Had some shrinkage in 7 > months > 06/11/03 - Appt at MD - Suggested changing chemo – failing > current treatment > 07/25/03 - Began Oxaliplatin/Xeloda Chemo > 10/20/03 - Increased Xeloda – Still failing treatment > 11/12/03 - Added Celebrex - continued failure > 01/15/04 - Switched to FOLFOX4 chemo > 02/23/04 - CEA drops 80 points > 02/25/04 - First Symptoms of Brain Problem > 03/01/04 - Brain Scan (MRI/CT) 1 " Brain Tumor - Left Parietal Lobe > 03/02/04 - Began 10 Whole Brain Radiation Treatments and Decadron > 03/15/04 - Last WBR Treatment > 03/18/04 – Took last Decadron - extremely fast weaning process > 03/22/04 - First Grand Mal Seizure (5 day hospital stay) > 03/22/04 - Back on Decadron, added Dilantin & Insulin > 04/06/04 - Resumed Folfox4 Chemo with added drug Erbitux > 04/20/04 - Switched to CPT-11 with Erbitux Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 Donna, You and Rick are in my thoughts and prayers. I do hope he will feel better; he has fought so gallantly as have you. Sharon > Rick had his brain MRI today and, as always, I picked up a copy of > the results. Haven't talked with the Onc yet, but I will on > Monday. Basically, the tumor has " very slight decrease in size " > and " there is slightly less associated vasogenic edema " . Although > we're thankful that there was no growth and no other lesions ....... > we were hoping that at least the swelling would be gone. More than > likely the Onc will have to increase Rick's Decadron (steroids) to > try to reduce that swelling. The Decadron makes Rick feel bad, > makes him have steroid-induced diabetes (requiring insulin shots 4 > times daily) and he's beginning to have the " moon face " look that > these type of steroids bring on. But most importantly ...... he is > feeling really bad. He did manage to work about 4-5 hours a day for > about three days this week ...... but has felt very bad today. For > some reason his heart rate seems to be staying at about 100-120 > beats per minute and during the night he gets up about once an hour > to pee ....... so he has trouble resting. He's on so many drugs now > that it's hard to tell what is side effects and what is symptoms > from the disease itself. I think I need to go talk with the Onc > (alone) and find out under what conditions I should be calling him > to make him aware of things. I haven't called him about the rapid > heart rate ....... because it seems lately I'm calling about > something every week. It's no wonder Rick is exhausted ...... with > his heart racing like that it's as if he's doing a light workout 24 > hours a day! > > We're just trying to hang in there and deal with it ........ and > still fighting with all our might. I have to tell you > though ........ Rick's body (and mind, for that matter) is getting > very tired and worn from feeling so bad over the last 8 weeks, all > the harsh drugs, the whole brain radiation treatments, and from the > 18 months of chemo and battling. Only God knows what the weeks and > months ahead hold for us ......... but I know that he will give us > the strength to endure ..... whatever his will may be for Rick. > Right now I just wish he could be more comfortable. That Decadron > usually makes people feel " suddenly better " .... even if it's a > false sense of what's really happening in their body ....... but > Rick isn't that fortunate ....... it happens to make him feel bad. > > OK ...... that's enough " woe is me " ......... we have been so > blessed over the last 18 months to have Rick feeling so good ....... > I guess we shouldn't be surprised that there has to be a decline as > this disease progresses. Thanks to all of my friends on this board > for all your support and encouragement .......... you guys are, and > have always been, the BEST!!!!! ) > > S T I L L Hanging in There!!!!!! > Donna Sisco > S/O Rick, 50, Arkansas > 09/19/02 - Diag. Stage IV Colon Cancer with 6 of 6 Pos. Nodes and > 60%+ Tumor Burden in Liver > 09/24/02 - 10cm Tumor removed from Colon > 10/22/02 - Began CPT-11/5FU/LV Chemo - Had some shrinkage in 7 > months > 06/11/03 - Appt at MD - Suggested changing chemo – failing > current treatment > 07/25/03 - Began Oxaliplatin/Xeloda Chemo > 10/20/03 - Increased Xeloda – Still failing treatment > 11/12/03 - Added Celebrex - continued failure > 01/15/04 - Switched to FOLFOX4 chemo > 02/23/04 - CEA drops 80 points > 02/25/04 - First Symptoms of Brain Problem > 03/01/04 - Brain Scan (MRI/CT) 1 " Brain Tumor - Left Parietal Lobe > 03/02/04 - Began 10 Whole Brain Radiation Treatments and Decadron > 03/15/04 - Last WBR Treatment > 03/18/04 – Took last Decadron - extremely fast weaning process > 03/22/04 - First Grand Mal Seizure (5 day hospital stay) > 03/22/04 - Back on Decadron, added Dilantin & Insulin > 04/06/04 - Resumed Folfox4 Chemo with added drug Erbitux > 04/20/04 - Switched to CPT-11 with Erbitux Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2004 Report Share Posted April 24, 2004 Donna You 2 are amazing. How I wish there were more than prayers to offer you! A little shrinkage is good but I know who wants him to feel so lousy. You take care and I'll keep praying. Cyber <<<<HUGS>>>>> Narice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2004 Report Share Posted April 24, 2004 Donna You 2 are amazing. How I wish there were more than prayers to offer you! A little shrinkage is good but I know who wants him to feel so lousy. You take care and I'll keep praying. Cyber <<<<HUGS>>>>> Narice Quote Link to comment Share on other sites More sharing options...
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