CancerCompass message board discussion started by Kln322 on 4/29/2007 http://www.cancercompass.com/message-board/message/all,11683,0.htm Thu, 24 Jul 2008 00:00:00 GMT Thu, 24 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My mom, age 61 was diagnosed in Feb 2006 w/ stage IV colon cancer.  She had a colon resection, complete hystorectomy and now has a temp ileostomy.  She has never quite regained her strength as she thought she should.  This month we found out she may have a partial obstruction or adhesion and her bowels aren't working properly.   She is very discouraged.  We have spent the last 2 months in and out of the hospital because she has a high output ostomy that keeps dehydrading her.  She just had her first chemo treatment with 5FU and Leucovorin.  I'm trying to find a Stage IV survivor who may have some encouraging words for her.     Kln322 Sun, 29 Apr 2007 00:00:00 GMT Please do not give up hope.  Tell your mom that it is time to fight.  My mom had to go through colon resection in August and then liver resection in November and started chemo in January.  She wanted to give up numerous times and had to fight the fight everyday.We were told that her cancer had returned to her liver after her first postop ct.  They were wrong!  We just got the results from the PET scan today and it showed NO CANCER anywhere in her body!  Miracles can happen.It is hard, it is rough and it stinks.  But get through it together, you can do it and she can do it too!Good luck to you.  Familygirl Wed, 02 May 2007 00:00:00 GMT My Dad  who is 62 was diagnosed with IV Colorectal cancer in sep. 06, he has had 5 months of quemotherapy, plus a colon resection and radio frequency on his liver mets. He barely had the surgery on Monday, I want to tell you all not to lose hope. My Dad is a doctor himself and has been able to keep working just as always. His liver was completely covered with cancer and the quemo was able to shrink the size of the tumors and where able to put radio frecuency. DO NOT LOSE HOPE. Apparently he´s doing GREAT. HIS PET SCAN IS CLEAR.  Almen44 Wed, 02 May 2007 00:00:00 GMT my dad was diagnosed with stage 4 colon cancer with liver mets in 12/04. The first doctors were anything but encouraging.We continued to MAKE dad get more opinions. We didn't stop until we found the doctor who had faith in conquering this nasty beast. We found that in Dr. Ahmed Ghany at OSU East. He is a doctor of many things (more degrees than a person should be able to earn!) However, his experience in pathology was extremely helpful and has helped him lead us in the right direction at every turn. B/c the tumor growth was so severe in the liver, we did chemo for 6 months. Dad's CEA started at 703 (normal 1-5) They kept telling us it was the direction that it went once treatment was started. I'd prayed for a reversal, and 6 weeks into chemo, we got just that...the CEA went to 30.7! It continued to go down so we knew the chemo was working. In June, he had comprehensive surgery with the best docs that Dr. Ghany could find - Dr. David Geller - the head of the liver cancer center at the University of Pittsburgh Medical Center. Dr. Geller got his mentor to delay a vacation to do dad's colon, then pass the scalpel to Dr. Geller...they also took out his gall bladder and appendix to be safe. It was a 14-hour surgery that saw 60% of dad's liver resected and 12" of his colon. He never even got jaundice and the nice thing is that the liver regenerates, so by Halloween, it was back as much as was needed! IF he wouldn't have been able to resect his liver, because of the regeneration, we were looking into a live transplant where I or a brother would give him part of our liver and they would have just tossed his : ) They can't give you a new one from an organ donor b/c once the cancer has spread through the bloodstream, it is always a possibility that it would come back. Dad was rid of growing cancer 7 months after initial diagnosis (keep in mind they figure these liver mets had been growing for 10 years - when he turned 50 someone should have recommended a colonoscopy, however, that didn't get done til he was 60). Dad underwent a few rounds of post op chemo to clear the way and then he was off of it for a long time. Since then a few very very small spots showed up in his lungs, but we are keeping them under control with chemo. Dad has never missed a day of work unless he was getting chemo or having surgery or recuperating. The side effects have been almost nonexistent.There are lots of things I've learned, but a few of the real gems are:1) No matter how much you respect your family doc or how you don't want to 'disagree' with their diagnosis, you need to get multiple opinions. We started in Van Wert, Ohio, went to Toledo, Down to Duke University and final hit paydirt at OSU East with Dr. Ghany. You find a doc that will be positive - no matter how many referrals it takes or how many folks you turn to for help.2) You visualize the cancer leaving your body and getting healthy again. Of course we also felt prayer was critical - candles were lit around the country by friends and relatives.3) Someone should always be with the patient and spouse. I go to everything with mom and dad - I take notes - I research ahead of time so we can talk intelligently. It is too much for the patient and spouse to think about as terms and things are thrown their way. Start a binder. Actually at a discovery channel store, you can get a free livestrong binder. This binder came out about a year after we'd begun this journey. I marveled at it b/c it was basically what I'd set up on my own to keep my own sanity. Notes are key!4) Do your research. The message board at www.cancercompass.com is great. I have a lot of my dad's story out there.5) In working with medical providers, I make sure they all see my dad as a person and not just a patient. This has been easy b/c we've had such great medical professionals, however, even at the UPMC hospital, I made sure each nurse understood we were there, watching and helping as necessary but that my dad had never been sick a day in his life and this was a scary experience for him.6) Find the success stories and stay positive. The patient needs to keep a positive attitude or all the medicine in the world won't help.  I could write tons more, but don't want to totally overwhelm you. I can share the chemo drugs dad was on, other tips if going through chemo or surgery...to see what is possible, an email to Dr. David Geller (the nicest individual and most qualified doc for this in the world). Tell him Michelle, Mike Langhals' daughter sent you. He's helped tons of folks that we've sent him throught this board. You have to become passionate about living strong with cancer and building a team of medical professionals and family and friends who will help the person with cancer see the hope and the healthy side of things. Like I've said, Dad is doing great. Works everyday. Golfs regularly and farms 500 acres on the 'side'. I attribute it all to attitude, a support system and finding the right docs! Weadocm Thu, 10 May 2007 00:00:00 GMT wow your dad sounds just like mine- the doctors he has seen were anything but enouraging at first.  the tumors to his liver are also too large to do surgery now, but we hope for it after chemo. he just started chemo- a clinical trial on avastin, erbitux, 5-FU, and oxaliplatin. we really hope he responds well and could possibly get a liver resection down the road. thank you for your inspiring story.  Jen4relient Thu, 10 May 2007 00:00:00 GMT Wow sounds like OSU is the place to go we are going to the Dr today to try and get a referral to go there as I type this ....my husband has Stage 4 with liver met... I am researching this SIRTEX it is incredable and these Dr down at OSU seem to be incredible ...Thanks so much for your email...God Bless Tmrsfitz Fri, 08 Jun 2007 00:00:00 GMT Let me know if you need anything else at all....Just tell dr. ghany's nurse teri, you'll wait and be doublebooked or anything, just to see him. dr. geller in pittsburgh is the amazing liver oncology surgeon also....prayers be with you! Weadocm Sun, 10 Jun 2007 00:00:00 GMT Your dad's story was so inspiring to me and my mother who has stage 4 colon cancer. I was wondering if you could send me the e-mail address of Dr. David Geller? Also, what chemo drugs did your father take and what does his diet consist of? Prbmami Mon, 18 Jun 2007 00:00:00 GMT  On 6/18/2007 Prbmami wrote:Your dad's story was so inspiring to me and my mother who has stage 4 colon cancer. I was wondering if you could send me the e-mail address of Dr. David Geller? Also, what chemo drugs did your father take and what does his diet consist of? "Geller, David" gellerda@upmc.eduhe is WONDERFUL!!! tell him Mike's daughter Michelle sent you...from Buckeye country! Dad did the supplements as far as a good mulit vitamin and fish oils and ate a normal healthy diet....nothing extremeDad's chemo is 5FU, leucavorin, irinotecan  and avastin...so far, it is doing its job. God be with you...let me know if i can help in any other way whatsoever! Weadocm Mon, 18 Jun 2007 00:00:00 GMT My dad is doing 6 months of chemo treatment for his colon cancer..stage 3..   Did you dad do something called FolFox regiman?  That is what my dad is doing..  I hope its the right move for my dad.... thanks Tiffy Fri, 06 Jul 2007 00:00:00 GMT How´s your Dad doing??? My Dad passed away dec. 14.Hope yours is doing better.Please let me know   Almen44 Thu, 31 Jan 2008 00:00:00 GMT I have just read your post from July 2007 and am wondering how your Dad is doing?  My stepson, 34, Stage IV with lung mets.  he has had rectum removed, several rounds of chemo - now on campustar, avastin and erbitux.  I found it interesting that you were at UPMC.  We have just contacted Dr. Lukevich for lung procedures they are offering.  Currently we are being treated at Duke. (We live in Charlotte, NC)  I loved your comment about never stopping - which is what we are doing.  We are currently even considering surgery in Germany that is not offered in the US.  We are just waiting for CT scans again April 15th.  Thanks for any info on the lung mets. Jan Janbopuck Sun, 16 Mar 2008 00:00:00 GMT Thank you for your dad's story. I was diagnosed with stage 4 colon cancer last month after a hystrectomy and colon resection and have just started chemo. I was discouraged to read a statement that there was no cure. Your dad's story gives me hope. cancerfree2 Mon, 12 May 2008 00:00:00 GMT