Sugarshine's Journey with Pancreatic Cancer

I became ill in July of 2011. Diagnosed with pancreatitis due to gall stones. They removed my gall bladder in August. I had no relief, actually symptoms became worse. Back to ER several times. Had lots of test, C T scan showed a mass in my pancreas but that was not considered significant. It wasn't until loss of 35 pounds and my GP asking " when are they going to biopsy your pancreas" then ordering the biopsy himself that I was diagnosed with stage IV pancreatic cancer. The really bad part is I am a RN, so I knew it was something bad, just didn't want to acknowledge it. Everything moved fast after that, dx on Dec 9th, Whipple on Dec 29th. Next Oh No! Was Feb. when I was told it had metastasized after the surgery to my liver, and abdominal wall front and back. Had a rough 6 months with chemo and recovering from surgery. Then pulmonary embolisms in May, insulin dependent diabetes in June. The good news is the chemo has been working, everything except the liver mets have shrunk, but my last C T scan just showed a new spot on my liver. Will be watching it close and will change to another chemo if it continues to grow. I have faith, try to be optimistic, but it is hard sometimes. Especially as I know the general prognosis of this cancer. The kicker is, I had applied for retirement in Jan. 2011, received my first retirement check in the hospital in August. This wasn't the retirement I had in mind!

I had a Whipple on Dec 29th 2011. Removed part of my pancreas, my spleen, left adrenal gland, and 19 lymph nodes. It was the most painful surgery I have experienced, and it took longer to recover from than anything I had ever experienced. I had 3 subsequent hospitalizations. One from a small accumulation of fluid at the resection site of my pancreas. A couple because of severe vomiting and dehydration. About June I seemed to turn a corner and have been doing better, weight stabilized and ( knock on wood) no further hospitalizations.

I started Gemzar in Feb. had nausea and vomiting the first 3 months, but the vomiting subsided and now have just the nausea. My hair has become very thin, I am very tired,get body aches like the flu. In May I developed pulmonary embolisms which I take daily injections of Fragmin for. All in all it is bearable, not as bad as I was afraid it would be. I also get thrush, mouth sores and a white plaque on the mucus membranes in my mouth and throat. Have had several urinary tract infections since chemo started. About 6 months into the chemo my tumors started shrinking ( I have mets to my liver and the abdominal wall front and back) everywhere except my liver. I learned last month that I have a new spot on my liver and my CA 19-9 has started increasing. If this continues will have to change to a different chemo, Cisplatin and 5 FU. I have put it in my higher powers hands and we will see though.

The portion of my pancreas was removed that makes insulin. So about 6 months after my Whipple I became a diabetic. Also had to start taking the pancreatic enzymes to help digest my foods. Having to stick to a low sugar diet has been hard since I have very little appetite anyway. It's hard to keep your weight stable and regain all you lost during this illness when your diet is limited. I seem to have found the diet that works to keep both my sugar and weight stable now though. Having this forum and being able to see what others like me have done to resolve these problems has been such a tremendous help. Actually seeing that there are survivors has done more for me than anything else has. Thank all of you so much, you will never know what a life saver all of you are just by letting us know there is hope. The statistics are so grim!!

Seen by my oncologist Monday. Learned my chemo isn't working as well, Ca 19-9 numbers up a little, 65, pain increased. Decision time. There is a clinical trial I should be eligible for. I will have to be off treatment for 4weeks though. That's scary to me. There is another chemo that is proven to work, but is very aggressive and seems to me would be better to hold in reserve in case the clinical trial doesn't work. It could be a moot point since I need another CTScan to see how fast the tumors are growing. If they are moving real fast will just go straight to the known chemo. Last scan showed most of tumors have shrunk, but have a new one on my liver. Was kinda expecting this. It's still a shock when you actually hear it spoken. Just in time to ruin holidays for another year. My diagnosis anniversary is coming up, Dec 14th 2011. Hd been ill since July, just took forever to actually biopsy the "cyst" they found on my pancreas in August. What will be will be though. I just have to have faith and stay positive. My family and friends are awesome and supportive, so we will get through this!

Gemzar stopped working back in November. Changed to 5FU, cisplatin,irenneci (spelling wrong) and various other. Had a CTScan and found there are two liver mets that have doubled in size in 8 weeks, a spot on my lung they thought was mucus plug, but its still there with no changes so thinks it may be a possible met. It seems like two steps forward, all the other tumors have shrunk to insignificant size, then four steps back. One of the liver mets may be impacting the bile duct. Just when you can smile again terror strikes! I really would like some positive news for my poor family. They are the most fantastic caregivers, go above and beyond what is necessary. With out them I wouldn't have the strength to fight this!