Guest guest Posted April 5, 2005 Report Share Posted April 5, 2005 Jay... At the risk of sounding negative, I just wanted to tell you that Glenn went through 8 mos. of chemo after his colon resect....he did great...worked and felt fine, except for some fatigue. We thought all was well!!! He had only 3 lymph nodes of 22 that were cancerous. Only a few weeks of thinking " we had it made " ....then with no warning, the tumor indicators started going up...after a PET and CT, the mets to the liver was found. And you know the rest of the story.... I'm not sure what the answer is for you....maybe pray about it?? Ask for guidance?? Good luck, sweetie...sounds like you had a rough day!!! Lots of hugs and prayers, Donelle Caregiver to Glenn Colon resection 6/03 removing 9 in. of colon including cancerous tumore and 3 of 22 removed lymph nodes were also cancerous. Infection set in at surgical site...Open wound for 2 months, chemo for 8 months Mets to Liver found 4/04, inoperable; one tumor too close to artery and vein Chemo infiltration to chest 8/04 with severe side effects including severe pain and muscle damage (permanent??) 10/04 Severe lower ab pain unable to eat, colon shut down, hospitalization w/morphine 8 days. Sent home with basically no diagnosis. Possibly the cancer causing the pain. Ascites (Fluid build-up) and Paracentesis (draining) on a regular weekly basis 11/09/04 on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions Mid Dec. 04 - CT. Scan shows largest tumor on liver has reduced 1/3, remaining 11 tumors stable; no growth. Chemo is working...Yippee!! 02/05 Continued bi-wkly Ascites and Paracentesis may mean chemo no longer working. Emergency CT. Scan performed. Tumors are reducing in size, some as much as half!!! Chemo is working!!! Found a blot clot in the vein going in to the liver!!! Waiting for MRI so GI Dr. can decide to treat with meds or surgery. Onc. now believes the blood clot is reason for the continuing Ascites. TRYING TO KICK BUTT with this darn disease!!! In a message dated 4/5/2005 10:51:50 PM Eastern Standard Time, jayishome@... writes: Thanks... guys for keeping me on track... sometimes I go through a period of denial... where I even avoid these wonderful posts... then I cry, then I go and run until I feel I will collapse... ( a guy thing ) then I sit on the stool and cry again.~ I do not have a colostomy, and so, I have to go to the library about 10 times a day..... then I go and read the posts, and then play with my boys... Today was one of those days... I eat nothing but brocoli, am on Essiac, and drink lots and lots of water. I run till I drop... Its just one of those days. My dads voice always comes back to haunt me... he is the one that says conventional medicine to treat cancer is a big scam... I have argued with him as we all know eneough about medicine to know otherwise... but when ol doc says, we gotta slam a new port in you and do some folfox... I ask why... " because you are very healthy to withstand it... and just to be on the safe side " : I ask... ok... am I done after that... ??? no answer... Then I feel a little twinge of pain... and cannot help to think; is this the cancer pinching me? ~ or the voice of my father warning me to stay away from the docs... mmmm ~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2005 Report Share Posted April 5, 2005 Thanks... guys for keeping me on track... sometimes I go through a period of denial... where I even avoid these wonderful posts... then I cry, then I go and run until I feel I will collapse... ( a guy thing ) then I sit on the stool and cry again.~ I do not have a colostomy, and so, I have to go to the library about 10 times a day..... then I go and read the posts, and then play with my boys... Today was one of those days... I eat nothing but brocoli, am on Essiac, and drink lots and lots of water. I run till I drop... Its just one of those days. My dads voice always comes back to haunt me... he is the one that says conventional medicine to treat cancer is a big scam... I have argued with him as we all know eneough about medicine to know otherwise... but when ol doc says, we gotta slam a new port in you and do some folfox... I ask why... " because you are very healthy to withstand it... and just to be on the safe side " : I ask... ok... am I done after that... ??? no answer... Then I feel a little twinge of pain... and cannot help to think; is this the cancer pinching me? ~ or the voice of my father warning me to stay away from the docs... mmmm ~ CEA: 0.05 BIOPSY: NEGATIVE SCANS: PENDING XELODA: 12 cycles of 2on/ 1 off ~4000 mg a day of gut wrench. I am tired! RADIATION: Standard six week regiment SURGERY: 30 DAYS/ almost died due to an Ecoli infection. lost over 40 pounds. Could not walk. Double surgery, one laprascopic, the other a 12 inch slash on my stomach due to exploratory surgery and to check the other organs out. Other organs turned out fine. 10 lymp nodes were pulled.. 8 were positive... Did I tell you guys, my fingerprints have been altered by chemo?? I have to scan in when I go to work, and last week was detained by security until resolved. Wierd. My doctor got wind of it and said he never has heard of that before. He looked at my hands... and said.... mmmm Jay Re: I HAVE HEALING EMPOWERING NEW > INFORMATION on how t... > > > > > > > > Im sorry to say , but I have a serious problem with this. > > If as you say you have the solution to cancer, why on earth would > you charge > > someone for it? > > Sounds like another bunch of junk that wants our money to me. > > I am not against home remedys , hubby takes quite a few > different things. > > But give me a break on the mumbojumbo cure all . > > You would think if someone had the cure to cancer, the cancer > victims would > > be cured by now!!!!! > > > > Stepping of my box now > > > > Deb > > > > 33yrold husband Joe, was diagnosed with CC in Sept, > > resection on Sept 27th 2004 > > found mets to the abdominal wall lining 3 lymph nodes involved > > open wound from infection until Jan 2005 > > Ileostomy reversal Dec 7th 2004 > > Chemo regiment begun Jan 2005 > > 5fu/levorican/Oxaplatin/ Avastin added Feb 14 2005 (Happy > Valentines > > Calcium Magnesium added for the Tingles Feb 28 2005 > > Ct Scan done March 23rd 2005 , 16 millimeter cyst like object on > liver found > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2005 Report Share Posted April 5, 2005 Oh Jay, I keep wondering if perhaps you need to go get another opinion. Seems to me that you are going through way to much. But then maybe my doctor is not aggresive enough. Such a fine line. We both need to do some deep soul searching. > > > > > > Wow... it almost sounds like me on my soap box! I cant wait to > > catch up... > > > > > > I saw doc today... He wants me on 4 cycles of Oxi / leuco and 5fu > > ~ I asked why, and he said to be on the " safe " side... I had 8 > > lymph nodes hit. No metastasis. All scans and blood work is > > normal. My body is in remarkable shape... sometimes I wonder why > > all the punishment. I am real close to saying " F " it... I have > > been off the chemo for a week, and my body is bouncing back > > remarkably well. I push myself really hard, like we all do... Now > > back to the poison??!! Jay > > > Re: I HAVE HEALING EMPOWERING NEW > > INFORMATION on how t... > > > > > > > > > > > > Im sorry to say , but I have a serious problem with this. > > > If as you say you have the solution to cancer, why on earth would > > you charge > > > someone for it? > > > Sounds like another bunch of junk that wants our money to me. > > > I am not against home remedys , hubby takes quite a few > > different things. > > > But give me a break on the mumbojumbo cure all . > > > You would think if someone had the cure to cancer, the cancer > > victims would > > > be cured by now!!!!! > > > > > > Stepping of my box now > > > > > > Deb > > > > > > 33yrold husband Joe, was diagnosed with CC in Sept, > > > resection on Sept 27th 2004 > > > found mets to the abdominal wall lining 3 lymph nodes involved > > > open wound from infection until Jan 2005 > > > Ileostomy reversal Dec 7th 2004 > > > Chemo regiment begun Jan 2005 > > > 5fu/levorican/Oxaplatin/ Avastin added Feb 14 2005 (Happy > > Valentines > > > Calcium Magnesium added for the Tingles Feb 28 2005 > > > Ct Scan done March 23rd 2005 , 16 millimeter cyst like object on > > liver found > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Hello Group, Well, I just got back from Mayo for the third time this year. I was diagnosed with PSC 14 years ago. I have been seeing Dr. Lindor for 12 years and Gossard since she has been there. I have had an amazing run over the last 14 years. Other than the itching and lack of sleep, the PSC has been manageable. The UC has also been under control for the most part. Because I have been blessed with good health, I have probably been living in denial about how serious this is. I guess reality is finally setting in this year. I had my third ERCP this year and they are looking at the " FISH " thing, which I don't fully understand. Even though I haven't received the final results, Dr. , ERCP Doc, stated that things look OK, even though they are still seeing cell changes and the narrowing of the duct. My bilirubin was 3.3, which is higher than it has been in several years. I have been avoiding researching support groups on the internet in that I have not been sick enough to join, and that is for people that want to talk about how sick they are. Well, that's what I thought. I am extremely impessed with the amount of information that is put out here and I did not even know about the Conference. Dr. Lindor and have been telling me for years to accept the fact that this will change my life. I am willing to accept this now. I look forward to participating in the group and I look forward to praying and doing my part to support this group. God Bless, Rick Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Welcome Rick, It was 19 years ago I got diagnosed. For the first 18 of those years I did not no anyone else with PSC. Its good to know others that suffer with the same thing, to know somebody who understands what your going through, to get and to give support. Glad I found it, I hope it is a blessing to you as well. Ian (52) PSC 89 Hello Group,Well, I just got back from Mayo for the third time this year. I was diagnosed with PSC 14 years ago. I have been seeing Dr. Lindor for 12 years and Gossard since she has been there. I have had an amazing run over the last 14 years. Other than the itching and lack of sleep, the PSC has been manageable. The UC has also been under control for the most part. Because I have been blessed with good health, I have probably been living in denial about how serious this is. I guess reality is finally setting in this year. I had my third ERCP this year and they are looking at the " FISH " thing, which I don't fully understand. Even though I haven't received the final results, Dr. , ERCP Doc, stated that things look OK, even though they are still seeing cell changes and the narrowing of the duct. My bilirubin was 3.3, which is higher than it has been in several years. I have been avoiding researching support groups on the internet in that I have not been sick enough to join, and that is for people that want to talk about how sick they are. Well, that's what I thought. I am extremely impessed with the amount of information that is put out here and I did not even know about the Conference. Dr. Lindor and have been telling me for years to accept the fact that this will change my life. I am willing to accept this now. I look forward to participating in the group and I look forward to praying and doing my part to support this group. God Bless,Rick -- Ian Cribb former P.Eng. (resigned in good standing) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Rick, My daughter got her dx after eight months of being sick, in August ’04 and before her dx I just wanted them to give her a pill and then everything would be all better. After the dx I just wanted the doctors to be wrong…after I learned a little bit about the disease, I really wanted the doctors to be wrong, and I wanted them to invent a pill to make her all better… she was so ill… the doctors weren’t worried about her liver as much as they were worried about her UC which they didn’t dx until ’06…they kept saying that my daughter was a diagnosis nightmare because she didn’t go by the book. Which fueled my hope that they were wrong…As the meds she was taking mounted the more despair I felt…when I found this group I started asking questions…and the more I learned the more I wanted her dx to go away…I lived in denial too…she was too young/ too sick to care…as she got older and I started to accept the fact that she has a disease that isn’t curable…without a transplant, and Ken taught us that a tx isn’t the easiest thing to do….and as she got older *she* started to realize that she was going to be living with this and she hates needles and she hates meds…I have tried chewables, liquid and pills to swallow…she hates them all…then she started wanting to die so she didn’t have to swallow pills anymore…she was nine years old (last year) and she was fascinated with dying and wanting to get it over with…that was hard for a mom to handle. There are days that I read posts on this list and I just cry thinking of my daughter having to go through this…it is just hard sometimes… I don’t know how I could handle it if I didn’t have my faith in Christ…If I didn’t believe that He has a reason for this and it is a good one because it is in His hands…I would be insane! And just because you are coming out of denial doesn’t mean you won’t slip back in at times…I like to go in and out of denial myself…LOL but right now I have decided that I will provide the healthiest foods and do all I can to make her comfortable and let God take care of the rest. Right now I am maintaining her quality of life by diet…a quite radical diet…but it works…however at her last MRCP it showed beading…so we know that the PSC is still progressing. I like to deny that…boy would I love to deny that. So…ok, I will stop rambling! Welcome to the support group! I soooo wanted to go to conference this year…but it just didn’t work out for me to go. Which really stinks since I am only about 2 hours away from ville! But… I have learned sooooo much here on this group…and it has helped me even when I slip in and out of denial. ) In Christ's Love, Bethany Hunt " And he [Jesus] is the propitiation for our sins: and not for ours only, but also for the sins of the whole world. " 1 2:2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2008 Report Share Posted May 4, 2008 Welcome Rick! This is a great support group. You'll love it. wife of (psc 1995, cca 2007, tx anytime now..... they promise they are not teasing us) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 Here's a paper on FISH (Medscape): http://www.medscape.com/viewarticle/543069_2 The way it was explained at the conference, a normal (non-reproductive) cell has 46 chromosomes. With FISH, they take bile duct brushings and essentially count the number of cells which have >46 chromosomes, which is indicative of cancer. The number of these loci observed can help determine cancer risk. The sensitivity is not very good yet (34%), but the specificity (correct conclusion) is very good (>90%). Arne ---- Rick henry_the_5@...> wrote: ============= Hello Group, ....I guess reality is finally setting in this year. I had my third ERCP this year and they are looking at the " FISH " thing, which I don't fully understand... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2008 Report Share Posted May 5, 2008 > > I have been avoiding researching support groups on the > internet in that I have not been sick enough to join, and > that is for people that want to talk about how sick they are. As a coping mechanism for a chronic illness, don't sell denial short! Like you, I also refused to acknowledge my PSC for many years until my symptoms got to be unmanagable last year. Ignoring it didn't make it go away, of course, but I didn't want it consuming my life (until it finally did) so I kept it dark for as long as possible. An essay in Time magazine about using denial positively inspired me in 2001, and I just reread it again today after seeing your post. It can be found here: http://health.groups.yahoo.com/group//message/31772 Quote Link to comment Share on other sites More sharing options...
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