CancerCompass message board discussion started by Sept2003cancerwife on 5/10/2008 http://www.cancercompass.com/message-board/message/all,23907,0.htm Sun, 06 Jul 2008 00:00:00 GMT Sun, 06 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Due to aggressive medical doctors, we have fought PC since August of 2003.  We had the Whipple in Sept 2003 cancer was  aggressively back in Aug 2003 - they were suspicious at the 6 month check up. My suggestions:1. Keep notes of what the doctors say. Be more aggressive than this cancer!!!!!!2. search the iternet for news3. We low carbed since cancers feed on sugar4. We watch the CA-19-9 count, changing chemos when it rises.5. We monitor temperature, blood pressure, blood sugar levels and amount of water intake daily (we strive for 64oz) We have fought thru:1. Swelling from congestive heart failure Sept 2005)2. Loss of blood from blood thinners3.  Blood clots in the leg (put in filters Nov 2007)4. Shingles July 20075. Pneumonia (Sept 2007)6. Would not, could not eat (Nov  2007 - Mar 2008) We eat ALOT of hot cereal cooked with whole milk instead of water.  Oatmeal, cream of wheat Coco Wheats with an extra tablespoon of unsweetned chocolate per serving added to the milk.7.  Fluid in the lining of the lung Jan 2008 - present)  Drained about once a month8.Currently we are dealing with a partially collapsed lung, enlarged spleen,THE GOOD NEWS is that the doctors think it may have stablized, the AT scans are showing that  tumors look about the same.Our CA 19-9 count is 10,300 down from 59,000 in late last year.We have been on lots of chemos, but current we are having mixed drugs.Avastin and Gemzar on day one with accompanying nausea medicines ,the next day Oxliplatin(?) over 3-4 hours because of nausea.  Hope this encourages someone and helps us all - there are long term survivors out there.  I would love to hear from some, please reply to this post or the message board with how long your fight has been with successes alng the way.Bless all of you, this is not a journey for wimps.  Sept2003cancerwife Sat, 10 May 2008 00:00:00 GMT Awesome!! Thank you for the wonderful and hopeful post! My husband has been battling stage 4 since last summer so we are coming up on one year soon. He is doing great with few complications besides a bit of nausea and fatigue now and then. He is currently on Oxaliplatin and Xeloda every other week. CA19-9 counts went down by half after the first infusion and he seems to feel great, now 3 cycles in. It is so wonderful to hear about someone doing as well as your husband despite some significant setbacks. Those times can be so scary. Here's to many more healthy and happy years ahead! Amy amyf1 Sat, 10 May 2008 00:00:00 GMT Wonderful post. I totally agree that you have to battle this tooth, nail, and lots of positive attitude and activity. Sounds like you are in control and proactive, and probably have something resembling a PHD in pancreatic cancer knowledge now. I'm going through this with my boyfriend, who was one year post DX last month. He had chemo & radiation and then the Whipple in 9/7/07. Next follow up the end of this month, holding my breath, but I'm prepared for whatever comes. I save every piece of information on new treatments, nutrition, and anything else that might help. You are your best advocate and along with a great medical team and aggressive treatment it is possible to fight this, and is not always the death sentence we were told about when we started. We are all buying time, one day at a time. Good for you! dmc1944 Sun, 11 May 2008 00:00:00 GMT WOW........... Sounds like a bad dream. I had the Whipple done in August 2006 and thought it was/is the end of the world........ THEN, I get into these sites and find out how lucky I really am....I always thought if you survived the Whipple all will be fine, but I was/am totally mistaken. I am still on Chemo every week (GEMZAR and 5FU) plus started Xeloda 8 weeks ago because of undetermined spots on my lung. I feel ok, just always tired and not much physical strength. From what I read on here and the John Hopkins site, I am one of the lucky ones.I pray alot more now and I pray for more people that I do not know then people I do know. My wife is a breast cancer survivor the week she was given the all ok message, I was diagnosed with PC.I add you to my prayers and hope all gets BETTER... Don't give up because it's very nice to put your feet on the floor in the morning (the rest is gravy).Gob bless and take care.....   mrtippy Sun, 11 May 2008 00:00:00 GMT Hi Survivor!!Thanks so much for the hope.  You are a courageous one!  God Bless you in your journey.  I lost my precious husband last November.  You are right, this disease is not for wimps!  Take good care...  -denise Denie Thu, 15 May 2008 00:00:00 GMT How encouraging you all were to me today.  My husband is post whipple from August 2007.  Everyday is an answer to prayer.  We have also had many complications.  Although his CA-19 count has been low 40, there are many side effects from the chemo and lasting effects from the surgery that we battle on a daily basis.  At present he is only on Xeledo until we get more results from CT scans recently taken.  He also had suspicous spots on his lungs but they ruled out cancer.  Vomiting was a main issue from February until now.  He is currently taking zophran and reglan together and it is working great.  The only thing that he is suffering with at present is joint pain (hips and knees) and abdominal pain.  I have to admit it does seem like we fight one battle after another, but I thank God every day that we CAN fight. Keep up the fight everyone and thanks again for your encouragement and insight. Mich1031 Sun, 18 May 2008 00:00:00 GMT