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Tue, Aug 18 8:50am · What is it like after Whipple surgery plus 1 1/2 years? in Cancer
That girl, just to add my diagnosis story, I first started having pain just under the rib cage on the right side as well as some digestive issues in July 2018. There were some changes in bathroom habits, such as urgency, grayish soft stools, undigested food (one learns to talk freely about poop when we have pancreatic cancer). I had endoscopy, which was normal and subsequent reassurance from my physician. When symptoms persisted I had an ultrasound of gallbladder which was also normal. Again I was reassured nothing was wrong. Throughout the fall of 2018 symptoms continued and I started using a heating pad on my stomach to ease the pain so that I could sleep. A colonoscopy in October was normal and again I was reassured and told that we may never find the cause of belly pain. Finally, after being pretty assertive, I was given a CT scan in December and that showed a mass on the head of the pancreas. A biopsy confirmed it was an adenocarcinoma and I received this news on January 2 of 2019. It took months to get my diagnosis because I think there are many causes of belly pain and few of them serious, so it took some assertiveness on my part for them to keep looking. This is a relatively rare cancer, but there is no screening tool for it, and presenting symptoms can be ambiguous. Please don't live in fear, but if you should develop symptoms that you know something isn't quite right, be your own advocate.
Mon, Aug 17 6:57am · What is it like after Whipple surgery plus 1 1/2 years? in Cancer
Thanks Dakota, yes, it's hard to remain positive when you read scientific papers that describe pancreatic cancer as a particularly "deadly" form of cancer. I'm not one of the lucky ones in that I am not a surgical candidate since there is metastasis to the liver. Nor could I tolerate folfirinox, but I had 18 months of chemo with various combinations with good control of tumor growth. I think this experience has taught me to enjoy life moment to moment and not have to have everything planned. I think digestive system cancer is a whole different animal and I've been very disappointed in the nutritionists' information and advice. I'm still doing more digging on that, but I also don't want to spend too much time researching about my disease. I just want to live and enjoy life, knowing my days are numbered. I admire you having horses whom I consider great healers, but I know how labor intensive that is. I'm very fortunate to have a couple friends with horses who are generous to let me come and groom or just hang out with the herd. Standing near a horse is in itself a lesson in mindfulness. Thanks for sharing your journey.
Sun, Jul 5 5:35pm · How are others with pancreatic cancers managing diarrhea? in Pancreatic Cancer
Frankly I'm afraid to try as I start radiation treatments this week and I don't want to rock the boat. I try to make one change at a time so i can see what the "true" effect is. I've scheduled radiation for afternoons because by then the diarrhea is generally under control. After radiation is completed I'll have a little treatment break and I can work with it some more. But thanks so much for asking!
Mon, Jun 29 6:58pm · How are others with pancreatic cancers managing diarrhea? in Pancreatic Cancer
Thanks! My physician recommended Imodium and I have some here at home but it seemed like when I took even one, it then caused constipation. Maybe I should try again!
Mon, Jun 29 11:25am · How are others with pancreatic cancers managing diarrhea? in Pancreatic Cancer
I am wondering how others with pancreatic cancers are managing diarrhea. I am using CREON and titrating it according to the amount of fat and protein in the meal, but still deal with daily diarrhea. My brother gave me some Activia and it seemed to help a little. Does anyone have experience with probiotics and have they been helpful? The number of formulas and forms they come in is confusing to me and I’d rather not go down that path unless I think it is likely to help.
Thank you Merine, for sharing this. After 18 months of harsh chemotherapy And no treatment end in sight, I can relate to the questions of quality vs quantity of life. I had a couple thoughts about your post. Are you planning to go into home hospice or a hospice house? If a hospice house, that is where you would spend your final days, not in a hospital. I have had 2 dear ones die of cancer in hospice houses and both experiences were comfortable and kind to all involved. This is my choice when the time comes. I do not want to die at home because I want my loved ones to not have to worry about anything except enjoying final time with me. Regarding the Topotecan, everyone is so different in their responses to these drugs. For example, early this year I was changed from Irinotecan to gemcitabine and I was told the latter would have fewer side effects. NOT. I was sick as a dog and have since been changed to yet another drug. It seems like it could happen the other way around too. So, it seems like you could try it and if side effects were intolerable you could stop. If you have been hospitalized 3X from chemo side effects though I can certainly understand your fear. I would candidly discuss this with the oncologist before being pressured into the go, no go decision. Peace and all good in this journey.
Hi Lisal64, I like to go to a local gym so you automatically are safer since there are people to help. Many gyms have a walking track. The stronger you keep your legs, the better your balance will be and better balance means lower risk of falls. If a gym is not possible a home treadmill or other type machine with handlebars might work. Having a friend to walk with in the neighbourhood is safer too. Anything to keep legs strong is a boon. Someone once said "force yourself to exercise." And that was the best advice I think I have ever received. The benefits are so multifactorial. Autonomy is at risk in many ways when we have cancer and lack of mobility and the dependence it requires is just no fun. So keep walking!!! (as I sit here sick as a dog after chemo, I am listening to my own advice too)