Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Hello I am new to this group. My name is Lori. I came to this group to find out more about what goes on with this type of cancer since my sister / best friend, has been diagnosed. Soon she will be having Chemo and radiology. I am very scared. Thank you for listening to me. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Hello I am new to this group. My name is Lori. I came to this group to find out more about what goes on with this type of cancer since my sister / best friend, has been diagnosed. Soon she will be having Chemo and radiology. I am very scared. Thank you for listening to me. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Hello I am new to this group. My name is Lori. I came to this group to find out more about what goes on with this type of cancer since my sister / best friend, has been diagnosed. Soon she will be having Chemo and radiology. I am very scared. Thank you for listening to me. Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Welcome Lori Maybe if you can tell us a little more we can give you the information you are looking for. In the meantime this is my husband Phil's history: Narice Caregiver to Phil Diagnosed June 19, 2003 Stage 4 with multiple liver mets (Initially thought to be pancreatic) July 2003-Severe swelling, Some Jaundice PCP tells us NOT to Seek treatment. We begin treatment with Dr. Jan Rothman at Regional Cancer Center Erie, PA 5FU, Leucovorin, Oxilaplatin August 2003- Phil's weight drops from 165 to 135 September 2003-Phil goes off diuretic (oops) In late September he has CT showing significant Reduction of tumor. ;-) December 2003- Tumor stable side effects so far are minimal some flu like symptoms with the Oxilaplatin, dry chapped hands and occasional nausea March 2004-Weight gain of 20 lbs (fluctuates between 155-160) Tumor still stable, (13 cm in colon multiple liver mets. Largest being 9 cm April 2004 1 month chemo break YIPEEE!!!!! April 21, 2004-Phil starts on new chemo 5 FU, Leucovorin, Oxilaplatin AND Avastin via 46 HR pump. Weight 160. April 23.2004 Mouth sores develop Using *magic mouthwash*. CEA 2.5 down from 3.5 before Avastin Low red & white counts Dr. states *You could be the poster person for chemo response, when I first saw you in the hospital last June 2003 I practically had to 'scrape you off the wall.' " :-> 5/17/04 Red & white counts normalized. Platelet count down to 88,000 (normal 150,000. Chemo postponed for 1st time since diagnosis 5/24/04 weight 160 All blood counts at or near normal. Platelets at 122,000 June 2004 One year and still here Chemo June 17 severe mouth sores develop platelets drop to 49,000 150,000 normal White counts drops to .09! Normal is 4.5 Starts week of Neuprogen to boost white count on July 1 7/7/04 Blood Counts normal chemo resumes July 2004 CHEMO BREAKS yippee!!!!! 8/3/04 Chemo resumes FOXIL + Avastin Bleeding gums (probably due to dental work), dark urine Resolved by week's end. Blood counts still normal 8/17 Removed Oxilaplatin Hives during 5FU Leucovorin treatment Avastin and 46 hr. 5FU continues. 8/19 Endoscopy reveals Acid Reflux as cause of black stools and bloody vomit. THANK YOU GOD!! 8/20 Acidphex heals acid Reflux so no more bleeding but Phil will stay on it to heal lesions in his esophagus and prevent further damage. Sept. 2004 No noticeable problems CT scan scheduled for October October 2004 CT scan reveals no change. No reduction and no new growth YIPPEE November 2004 Low blood counts lead to a blood transfusion and need for IV and oral iron. December 2004 Counts up slightly and chemo resumes. Oncologist is considering SURGERY!!!! : January 21, 2005 colonoscopy Dr. could not find the tumor!!!!! : Feb.2005 CT and PET scan confirms above resume chemo Consult with Liver specialist Dr. Geller from University of Pittsburgh Medical Canter scheduled for Monday Feb.28. April 1 2005 surgical implants of chemo pump to liver and removal of gallbladder which would be affected by same. Pump delivers a 5FU like chemo to liver to work on multiple liver mets on a2 week on 2 week off schedule. Pump is refilled by injection, April 19, 2005 Recovery going well Stitches to be removed April 21. Phil working full schedule Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Welcome Lori, Sorry that you have the need to be here, but it's a great bunch of folks. A suggestion I have is to use the search feature on the website. If you know the phrase you are interested in, you can search the archives and find a bunch of good information. Many times these issues get talked about with different people at different times. Miracles happen! Cliff H. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Welcome Lori, Sorry that you have the need to be here, but it's a great bunch of folks. A suggestion I have is to use the search feature on the website. If you know the phrase you are interested in, you can search the archives and find a bunch of good information. Many times these issues get talked about with different people at different times. Miracles happen! Cliff H. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Welcome Lori, Sorry that you have the need to be here, but it's a great bunch of folks. A suggestion I have is to use the search feature on the website. If you know the phrase you are interested in, you can search the archives and find a bunch of good information. Many times these issues get talked about with different people at different times. Miracles happen! Cliff H. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Hi Lori Glad you found us and we will do our best to help you along as you support your dear sister/best friend... If you could tell us more about her diagnosis we could be more help. My story is in the Files section, under Our Story, and then Jolene's Story... But briefly Colonoscopy - end of Sept 04 - after putting it off for several years, sister had polyps removed awhile back It went like a breeze, I was going to watch the tv monitor and next thing I knew I was awake and in the recovery room. Bad news: Tumor about 20 cm from the " end " -- Surgery Oct 1, then sprung a leak and had to re-do me Oct Oct 8, finally got home Oct 15.. said I was stage IIIc with lymph node involvement.. Had a port acath inserted Dec 13. Chemo began in Jan.. Missed some sessions due to low counts. Getting the standard Colon cancer cocktail : 5FU/leucovorin,/Oxilaplatin Scheduled for 6 mons but with the missed sessions it is extended a bit. Am taking Neupogin shots for low white count, and just starting Postassium because I am low in that. Over all doing well with the chemo, somewhat reduced energy level. But when I am UP I do what I can, when I am NOT UP I just chill, read, sit at computer. Trying to learn digital scrapbooking (cause I don't want to buy all that paper, LOL), going to work on genealogy stuff and general keep busy one way or another. My attitude is that I choose to laugh instead of cry, scared yes but of what? so why worry about it until it presents itself. I have to darling granddaughters one about to become a teenager in August, and another about to become 5 and Princess of the world.. LOL... I am going to see some of their growing up anyway. In Sept. my son is takng me to the Celtic Fest in Sebastopol, CA and to tour some wine country as well. I am still working on the nerve to jump tandem out of a perfectly good airplane (but that won't happen just yet)... My hubby passed away of cancer 5 years ago, but I have 5 children who support me each in their own way. My youngest daughter and the 2 girls live with me, as well as the youngest son. So have people here and they help as they can.. Oldest daughter lives in Jarrell, Texas but comes in when I have chemo. She is the designated caretaker. My rock! Oldest Son Jay lives in Waco gives support and will come when we need him. Only one of my kids seems to avoid me - son Rick. He avoided his dad too when he was really sick,as well. He did come the other night when he needed his taxes done. So I am good for soemthing. His wife/girlfriend has her own health problems - had quadruple by pass surgery last year, only 38 years old. So has his plate ful as well.. That is my story, sorry not so brief as I had planned. Thoughts and prayers are coming your way for you and your sis.. Hang in there and keep in touch. What else can I tell you. Colon cancer is a slow-growing cancer, is treatable -- we have some Stage IV " s who are successfully fighting the disease.. The chemo is milder than some for other cancers but everyone is affected differently. I have had few side effects, thinning hair (usually don't lose hair with this chemo), tingling in fingertips and other extremities and who yes in throat (sensitivty to cold), some diarrhea but controllable, some nausea but controllable. Some whoozy days last week so just took it easy. My appetite is ferocious.. I think something will taste good and I have the money I will go for it. or I cook it. LOL.. I can eat all day long. Of course, that means I am NOT losing any weight and I sure could afford to let go of 40 lbs or so. Well, I tell myself - becareful what you wish for old lady, because it could happen. So anyway.. Oh yes did I tell you I kind of run off at the mouth when I am on chemo... I think it is one of the feel good drugs I get during chemo week. LOL.. As I said hang on Lori, once you are better informed you will have less to fear and much to look forward to.. Hugs Jolene lori hunter wrote: > Hello > I am new to this group. My name is Lori. I came to this group to find > out more about what goes on with this type of cancer since my sister / > best friend, has been diagnosed. Soon she will be having Chemo and > radiology. I am very scared. Thank you for listening to me. Lori > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Hi Lori Glad you found us and we will do our best to help you along as you support your dear sister/best friend... If you could tell us more about her diagnosis we could be more help. My story is in the Files section, under Our Story, and then Jolene's Story... But briefly Colonoscopy - end of Sept 04 - after putting it off for several years, sister had polyps removed awhile back It went like a breeze, I was going to watch the tv monitor and next thing I knew I was awake and in the recovery room. Bad news: Tumor about 20 cm from the " end " -- Surgery Oct 1, then sprung a leak and had to re-do me Oct Oct 8, finally got home Oct 15.. said I was stage IIIc with lymph node involvement.. Had a port acath inserted Dec 13. Chemo began in Jan.. Missed some sessions due to low counts. Getting the standard Colon cancer cocktail : 5FU/leucovorin,/Oxilaplatin Scheduled for 6 mons but with the missed sessions it is extended a bit. Am taking Neupogin shots for low white count, and just starting Postassium because I am low in that. Over all doing well with the chemo, somewhat reduced energy level. But when I am UP I do what I can, when I am NOT UP I just chill, read, sit at computer. Trying to learn digital scrapbooking (cause I don't want to buy all that paper, LOL), going to work on genealogy stuff and general keep busy one way or another. My attitude is that I choose to laugh instead of cry, scared yes but of what? so why worry about it until it presents itself. I have to darling granddaughters one about to become a teenager in August, and another about to become 5 and Princess of the world.. LOL... I am going to see some of their growing up anyway. In Sept. my son is takng me to the Celtic Fest in Sebastopol, CA and to tour some wine country as well. I am still working on the nerve to jump tandem out of a perfectly good airplane (but that won't happen just yet)... My hubby passed away of cancer 5 years ago, but I have 5 children who support me each in their own way. My youngest daughter and the 2 girls live with me, as well as the youngest son. So have people here and they help as they can.. Oldest daughter lives in Jarrell, Texas but comes in when I have chemo. She is the designated caretaker. My rock! Oldest Son Jay lives in Waco gives support and will come when we need him. Only one of my kids seems to avoid me - son Rick. He avoided his dad too when he was really sick,as well. He did come the other night when he needed his taxes done. So I am good for soemthing. His wife/girlfriend has her own health problems - had quadruple by pass surgery last year, only 38 years old. So has his plate ful as well.. That is my story, sorry not so brief as I had planned. Thoughts and prayers are coming your way for you and your sis.. Hang in there and keep in touch. What else can I tell you. Colon cancer is a slow-growing cancer, is treatable -- we have some Stage IV " s who are successfully fighting the disease.. The chemo is milder than some for other cancers but everyone is affected differently. I have had few side effects, thinning hair (usually don't lose hair with this chemo), tingling in fingertips and other extremities and who yes in throat (sensitivty to cold), some diarrhea but controllable, some nausea but controllable. Some whoozy days last week so just took it easy. My appetite is ferocious.. I think something will taste good and I have the money I will go for it. or I cook it. LOL.. I can eat all day long. Of course, that means I am NOT losing any weight and I sure could afford to let go of 40 lbs or so. Well, I tell myself - becareful what you wish for old lady, because it could happen. So anyway.. Oh yes did I tell you I kind of run off at the mouth when I am on chemo... I think it is one of the feel good drugs I get during chemo week. LOL.. As I said hang on Lori, once you are better informed you will have less to fear and much to look forward to.. Hugs Jolene lori hunter wrote: > Hello > I am new to this group. My name is Lori. I came to this group to find > out more about what goes on with this type of cancer since my sister / > best friend, has been diagnosed. Soon she will be having Chemo and > radiology. I am very scared. Thank you for listening to me. Lori > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Hi Lori Glad you found us and we will do our best to help you along as you support your dear sister/best friend... If you could tell us more about her diagnosis we could be more help. My story is in the Files section, under Our Story, and then Jolene's Story... But briefly Colonoscopy - end of Sept 04 - after putting it off for several years, sister had polyps removed awhile back It went like a breeze, I was going to watch the tv monitor and next thing I knew I was awake and in the recovery room. Bad news: Tumor about 20 cm from the " end " -- Surgery Oct 1, then sprung a leak and had to re-do me Oct Oct 8, finally got home Oct 15.. said I was stage IIIc with lymph node involvement.. Had a port acath inserted Dec 13. Chemo began in Jan.. Missed some sessions due to low counts. Getting the standard Colon cancer cocktail : 5FU/leucovorin,/Oxilaplatin Scheduled for 6 mons but with the missed sessions it is extended a bit. Am taking Neupogin shots for low white count, and just starting Postassium because I am low in that. Over all doing well with the chemo, somewhat reduced energy level. But when I am UP I do what I can, when I am NOT UP I just chill, read, sit at computer. Trying to learn digital scrapbooking (cause I don't want to buy all that paper, LOL), going to work on genealogy stuff and general keep busy one way or another. My attitude is that I choose to laugh instead of cry, scared yes but of what? so why worry about it until it presents itself. I have to darling granddaughters one about to become a teenager in August, and another about to become 5 and Princess of the world.. LOL... I am going to see some of their growing up anyway. In Sept. my son is takng me to the Celtic Fest in Sebastopol, CA and to tour some wine country as well. I am still working on the nerve to jump tandem out of a perfectly good airplane (but that won't happen just yet)... My hubby passed away of cancer 5 years ago, but I have 5 children who support me each in their own way. My youngest daughter and the 2 girls live with me, as well as the youngest son. So have people here and they help as they can.. Oldest daughter lives in Jarrell, Texas but comes in when I have chemo. She is the designated caretaker. My rock! Oldest Son Jay lives in Waco gives support and will come when we need him. Only one of my kids seems to avoid me - son Rick. He avoided his dad too when he was really sick,as well. He did come the other night when he needed his taxes done. So I am good for soemthing. His wife/girlfriend has her own health problems - had quadruple by pass surgery last year, only 38 years old. So has his plate ful as well.. That is my story, sorry not so brief as I had planned. Thoughts and prayers are coming your way for you and your sis.. Hang in there and keep in touch. What else can I tell you. Colon cancer is a slow-growing cancer, is treatable -- we have some Stage IV " s who are successfully fighting the disease.. The chemo is milder than some for other cancers but everyone is affected differently. I have had few side effects, thinning hair (usually don't lose hair with this chemo), tingling in fingertips and other extremities and who yes in throat (sensitivty to cold), some diarrhea but controllable, some nausea but controllable. Some whoozy days last week so just took it easy. My appetite is ferocious.. I think something will taste good and I have the money I will go for it. or I cook it. LOL.. I can eat all day long. Of course, that means I am NOT losing any weight and I sure could afford to let go of 40 lbs or so. Well, I tell myself - becareful what you wish for old lady, because it could happen. So anyway.. Oh yes did I tell you I kind of run off at the mouth when I am on chemo... I think it is one of the feel good drugs I get during chemo week. LOL.. As I said hang on Lori, once you are better informed you will have less to fear and much to look forward to.. Hugs Jolene lori hunter wrote: > Hello > I am new to this group. My name is Lori. I came to this group to find > out more about what goes on with this type of cancer since my sister / > best friend, has been diagnosed. Soon she will be having Chemo and > radiology. I am very scared. Thank you for listening to me. Lori > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Hi Lori, Welcome to our group. You will find answers here to a lot of your questions. Everyone here is very friendly and a great support. You will find a lot of knowledge here. So if you have any questions just ask. Someone here will be able to answer the quesions from thier own expeirence. You may also want your sister to join this group so she can find some support and answers to any questions. My Prayers are with you and your sister. Ingrid > Hello > I am new to this group. My name is Lori. I came to this group to find out more about what goes on with this type of cancer since my sister / best friend, has been diagnosed. Soon she will be having Chemo and radiology. I am very scared. Thank you for listening to me. Lori > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2005 Report Share Posted April 19, 2005 Hi Lori, Welcome to our group. You will find answers here to a lot of your questions. Everyone here is very friendly and a great support. You will find a lot of knowledge here. So if you have any questions just ask. Someone here will be able to answer the quesions from thier own expeirence. You may also want your sister to join this group so she can find some support and answers to any questions. My Prayers are with you and your sister. Ingrid > Hello > I am new to this group. My name is Lori. I came to this group to find out more about what goes on with this type of cancer since my sister / best friend, has been diagnosed. Soon she will be having Chemo and radiology. I am very scared. Thank you for listening to me. Lori > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 29, 2008 Report Share Posted July 29, 2008 If you played hockey at UMD, obviously you're tough! I also am fairly athletic, although it has a new meaning over 50! Start with the brochure at http://www.pscpartners.org/brochures.htm - it will give you a good overview. I'd also recommend the FAQs at: http://www.psc-literature.org/FAQ.htm. There really are no dietary recommendations, although most people do better on a low fat, low animal protein regimen (no guarantees). The medications you're taking are the usual standard UC/PSC treatments, and generally quite effective. There is a lot of controversy on Urso for PSC, but until you hear differently from your hep, I'd stick with it. I wouldn't say the only treatment is transplant, but it's currently the only cure (and even so, is subject to recurrence). We do have people here who have had PSC for 30+ years and are still doing well. Good questions - try the above for some on-line help. They were compiled by people in this group. Arne 57 - UC 1977 - PSC 2000 Alive and well in Minnesota ________________________________ From: [mailto: ] On Behalf Of jvasichek ....As you can see I have a lot of questions. I appreciate anyone taking the time to read my story. I have accepted that I have this disease and now I would like to be proactive. I thank you for your support. nne Vasichek Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2008 Report Share Posted October 8, 2008 Hi. Well, my husband just found out yesterday that he has PSC. We don't know all the details of his diagnosis, he has an appointment with a specialist next week. My question is, what to expect? Also, what can we do to make sure he has a healthy life? I want to do everything I can to help him stay well.... I feel at such a loss..... Any help would be so appreciated! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2008 Report Share Posted October 8, 2008 Mitsy, Welcome to the group, I'm sorry about your husband's diagnosis. but not all is lost. Some of us have continue to do quite well despite having had PSC for a long time and medicine continues to make advances. A good website to go to, to learn more about PSC is www.pscpartners.org. PSC varies a lot in all of us, so we cannot tell you what to expect for sure and a lot of the info on the web is dated. Keep the faith and the faith will keep you. Ian (52) PSC 89 Hi. Well, my husband just found out yesterday that he has PSC. We don't know all the details of his diagnosis, he has an appointment with a specialist next week. My question is, what to expect? Also, what can we do to make sure he has a healthy life? I want to do everything I can to help him stay well.... I feel at such a loss..... Any help would be so appreciated! -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2008 Report Share Posted October 9, 2008 thanks for the responses, you guys. it's so nice to read the messages on this board rather than the info on the web....that is a lot scarier!!!! Last night was a bad night. He was sick for about three hours, his stomach was verrrry upset. Like I said, we are new to the disease and dont' know all the steps. His appt with a specialist is next week so then we will know what all to do. In the meantime I will continue to hope and pray and study. It's difficult because we are only newly married and so our "honeymoon" phase is being taken away from us.... thanks for listening and being here. I imagine I will be frequenting this group quite a bit in the days/years to come. To: Sent: Wednesday, October 8, 2008 6:44:41 PMSubject: Re: new diagnosis Mitsy, Welcome to the group, I'm sorry about your husband's diagnosis. but not all is lost. Some of us have continue to do quite well despite having had PSC for a long time and medicine continues to make advances. A good website to go to, to learn more about PSC is www.pscpartners. org. PSC varies a lot in all of us, so we cannot tell you what to expect for sure and a lot of the info on the web is dated. Keep the faith and the faith will keep you. Ian (52) PSC 89 Hi. Well, my husband just found out yesterday that he has PSC. We don't know all the details of his diagnosis, he has an appointment with a specialist next week. My question is, what to expect? Also, what can we do to make sure he has a healthy life? I want to do everything I can to help him stay well.... I feel at such a loss..... Any help would be so appreciated! -- Ian Cribb P.Eng. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2008 Report Share Posted October 9, 2008 Misty, Very sorry to hear of your husband's recent diagnosis, but the silver lining is that you've found the best place on the web for support and information from real patients and their caregivers. The reality of your husband's situation is that PSC is a highly variable disease that progresses differently in all of us. If he hasn't had them done already, his docs will likely put him through a whole battery of tests (MRCP, ERCP, liver biopsy, colonoscopy, etc.) in the near future to try to stage the disease and determine if he has any of the common corollary afflictions like UC or Crohn's. It's a scary time, but necessary in order for you all to plan how to best to treat the disease. One of the most important things to keep in mind is that while this is definitely a life altering event, it's not a life defining event. Since I was diagnosed, I've sold a business, started a new career, had a third child, started and finished my MBA, and begun teaching. There will be times when the disease interferes with your plans, but you shouldn't plan around it. Peace, Bill Wise PSC '00, Listed TX '04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2008 Report Share Posted October 9, 2008 What else would you expect from a man with the last name Wise ?? Wise indeed. One of the most important things to keep in mind is that while this is definitely a life altering event, it's not a life defining event. Since I was diagnosed, I've sold a business, started a new career, had a third child, started and finished my MBA, and begun teaching. There will be times when the disease interferes with your plans, but you shouldn't plan around it.Peace,Bill WisePSC '00, Listed TX '04__._, Quote Link to comment Share on other sites More sharing options...
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