Guest guest Posted June 20, 2002 Report Share Posted June 20, 2002 Kathi: I know you are discouraged, but please don't give up hope. My husband got similar news 2 months ago. At that point he was quite weak, was not able to eat a lot, and was in a lot of abdominal pain. He has been on disability because he was not able to perform his job at the level that he wanted. We were quite disheartened by the news. He started on a compassionate use of Oxaliplatin a month ago and although he has not yet had a Catscan, we have seen a big improvement in his ability to eat, increase in energy, and less pain. The study that you mention gives you the benefit of the Oxaliplatin but the other drugs as well. I am convinced that these drugs all work differently for different people and there seems to always be a chance that they will work. I know that this drug may not work forever, but it certainly has given us some more quality time before the next drug becomes available. Please let me know if you would like more information on the Oxaliplatin. He has had side effects, but they have been much more tolerable than the side effects from CPT- 11. Best of luck in your quest. Keep the faith. Thinking of you. Amie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2002 Report Share Posted June 20, 2002 Oh Kathy, I'm so sorry to hear this bad news, I was thinking maybe you had an infection in the enlarged nodes. Please remember there are many stage IVs who are doing fine. It has been 15 months since I was diagnosed and I'm still here.....Cliff has been stage IV for over 2 years I think..... There is a lot of new stuff in trials - and soon to be in trials. A couple of things immediately coming to mind are PG-TXL and NB1011 - not sure where the nearest centers to you running these trials are though. PG-TXL seemed to be working in chemoresistant cancers and is at Roswell (NY) among other places. Perhaps the " immunotherapy " they are referring to is ALVAC cancer vaccine (saw a trial on the Fox Chase website) - I have heard some good stuff about this - Dr. Marshall (town - Lombardi) has been having success from what I read. If they refuse surgery, an alternative which may be " just as good " is the stereotactic radioablation (put " stereotactic " in the search box here) - I know there are several places in NY doing this, and I feel certain they would treat you with very limited visible disease. I've also got a ton of stuff on the experimental board - you can look thru some of this later. But I think the first thing to do is take a deep breath....and wait till the inital shock wears off. Then you can begin to explore some options and think more about the direction you want to go - AND tell your children. I think they should know...they will pick up on " something " going on anyway, you can't hide that. But wait until the right time...when emotions are more " normal " ....NEVER make decisions or do anything " critical " when you are upset, ALWAYS wait till later.... Hang in there Kathy - believe me, I know how hard this is but I promise you it will get better. Hardest time is ALWAYS the " changes " - initial diagnosis, recurrence, new scans, tests, etc. You have to search and scramble to adjust to the new situation....but after you do it gets easier. More later - gotta run! Best Wishes, > Well, biopsy results were positive. Oncologist was not optimistic (are you suprised?). She said that this is generally not surgically resectable, and that since the chemo failed (5FU, leu. and Camptosar) that option would also probably not be effective. This news was all delivered over the phone to me while I was at work today. She said that there is a trial that I am eligible for - 5FU, Oxyliplatin and an antibiotic therapy, a good study that is currently on hold due to toxicity but should be resuming early July. Also a study for oral Xeloda which she said had a low response rate and she wouldn't recommend it. She felt I should go to either Univ. of Penn or Fox Chase. I dedided to go to the gastrointestinal cancer specialist at Fox Chase, waiting to hear back when my appointment will be scheduled. She said he favors immunotherapy studies. There are also surgical oncologists there, and maybe they can operate. I told her I would like the lymph nodes removed, she said that surgery is usually done when it would be considered curative, and when the cancer is in the lymphatic system it is not considered curative as microscopic cells could be anywhere. I feel like I'm in a bad dream. Somebody please wake me up. Please pray for my family as they process this information today. I haven't really explained anything to my children (8, 13, & 16 yrs old) about this. I am trying to spare them, but I don't know if that is the right thing to do now, maybe they should know the seriousness of this situation. Thank you for allowing me to ramble here, you all are one of the first places I came to (God was first !) after speaking with onc. today. > Take Care, > Kathy O. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2002 Report Share Posted June 20, 2002 Oh Kathi, I was so hoping that would not be the diagnosis for you. My mom is in a very similiar position. She is not a surgical " candidate" for the same reason. It is not curative and it puts your body in a more weakened state plus, many chemo's can not be administered until you heal. is so right, take some time and absorb this and then get ready to do some serious research, chart your path and go full speed ahead. There is a cure, we just need to find it. My mom is to start a trial involving Oxi and Alimta on Monday. This could be the cure? Maybe, keep your hopes up high and don't settle for one opinion or even two...keep up the battle until you are satisfied!!! My thoughts and prayers are with you and your family, a oconnor@... wrote: Well, biopsy results were positive. Oncologist was not optimistic (are you suprised?). She said that this is generally not surgically resectable, and that since the chemo failed (5FU, leu. and Camptosar) that option would also probably not be effective. This news was all delivered over the phone to me while I was at work today. She said that there is a trial that I am eligible for - 5FU, Oxyliplatin and an antibiotic therapy, a good study that is currently on hold due to toxicity but should be resuming early July. Also a study for oral Xeloda which she said had a low response rate and she wouldn't recommend it. She felt I should go to either Univ. of Penn or Fox Chase. I dedided to go to the gastrointestinal cancer specialist at Fox Chase, waiting to hear back when my appointment will be scheduled. She said he favors immunotherapy studies. There are also surgical oncologists there, and maybe they can operate. I told her I would like the lymph nodes removed, she said that surgery is usually done when it would be considered curative, and when the cancer is in the lymphatic system it is not considered curative as microscopic cells could be anywhere. I feel like I'm in a bad dream. Somebody please wake me up. Please pray for my family as they process this information today. I haven't really explained anything to my children (8, 13, & 16 yrs old) about this. I am trying to spare them, but I don't know if that is the right thing to do now, maybe they should know the seriousness of this situation. Thank you for allowing me to ramble here, you all are one of the first places I came to (God was first !) after speaking with onc. today. Take Care, Kathy O. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2002 Report Share Posted June 21, 2002 Kathy, I am so sorry to hear your diagnosis. My prayers are for you and your family. With a major cancer center though, you may have options that even your oncologist isn't aware of. I wish you all that's good in your battle with this disease. Good luck to you and God Bless. Baylee >From: oconnor@... >Reply-To: colon_cancer_support >To: <colon_cancer_support > >Subject: Bad news >Date: Thu, 20 Jun 2002 15:19:57 -0400 > >Well, biopsy results were positive. Oncologist was not optimistic (are you >suprised?). She said that this is generally not surgically resectable, and >that since the chemo failed (5FU, leu. and Camptosar) that option would >also probably not be effective. This news was all delivered over the phone >to me while I was at work today. She said that there is a trial that I am >eligible for - 5FU, Oxyliplatin and an antibiotic therapy, a good study >that is currently on hold due to toxicity but should be resuming early >July. Also a study for oral Xeloda which she said had a low response rate >and she wouldn't recommend it. She felt I should go to either Univ. of >Penn or Fox Chase. I dedided to go to the gastrointestinal cancer >specialist at Fox Chase, waiting to hear back when my appointment will be >scheduled. She said he favors immunotherapy studies. There are also >surgical oncologists there, and maybe they can operate. I told her I would >like the lymph nodes removed, she said that surgery is usually done when it >would be considered curative, and when the cancer is in the lymphatic >system it is not considered curative as microscopic cells could be >anywhere. I feel like I'm in a bad dream. Somebody please wake me up. >Please pray for my family as they process this information today. I >haven't really explained anything to my children (8, 13, & 16 yrs old) >about this. I am trying to spare them, but I don't know if that is the >right thing to do now, maybe they should know the seriousness of this >situation. Thank you for allowing me to ramble here, you all are one of >the first places I came to (God was first !) after speaking with onc. >today. >Take Care, >Kathy O. > _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2002 Report Share Posted July 2, 2002 Read your email Kathy.......please contact me, I may be able to be helpful........my husband has stage lV colon cancer..........attitude is very important.........I take issue with doctors that tell you when your going to leave this world.......I think we have a choice in that matter........don't you? Joan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2008 Report Share Posted March 9, 2008 Marilyn, My prayers will be going out to you. From the experience of the many women in my family who had hysterectomies (not because of cancer), make sure you do not need to climb any steps for a couple weeks after surgery and make sure whoever driving you is driving REALLY slowly. I have faith that you will come out with flying colors. Best wishes, Sheena From: louisianascdlagniappe@...To: BTVC-SCD CC: pecanbread ; SCD-list@...; scdrecipe_creators ; SCDUK Subject: Bad News -- Prayers RequestedDate: Sun, 9 Mar 2008 01:15:43 +0000OK... I hadn't actually intended to post this openly to the lists until Ihad a few more ducks in the row, but since I messed up and posted it toSCD Recipe Creators while trying to include Donna in my list ofexperienced SCDers, I may as well tell the rest of you.Shed those extra pounds with MSN and The Biggest Loser! Learn more. Quote Link to comment Share on other sites More sharing options...
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