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Pancreas Cancer

peg was posted 04/30/2005 05:14 pm by jacqui
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My 70 yr old Mum is having 5FU now following her whipple in December of last year. She had the full whipple but unfortunately, the pathology report after surgery showed that she had 2 out of 14 lymph nodes involved, extensive perineural involvement and some positive surgical margins. A CT scan done 9 weeks after surgery showed no visible mets or cancer anywhere and then she started on her chemo regime which consists of 5FU and folinic acid (by injection) every day for 5 days, then three weeks off. This is to be repeated for 6 months. The first round they gave her completely knocked her for six. The inside of her mouth, cheeks, gums and tongue became sore and wrinkled/ridged; she suffered extreme fatigue (even to the point of falling asleep in the car on the journey home from the hospital each day); no appetite at all, coupled with a strange taste in her mouth all of the time, diarrhoea, pain in and around her whipple scar and some hair loss. The only symptom she didn't have that she had been warned about, was sore/dry hands and feet. She was very miserable during this time and as a result of the problems that she had eating, she lost 14lbs in the first month (more than she had following her surgery). She also slept a lot and was pretty inactive due to being so tired and this probably contributed to the fact that she developed a blood clot in her lung that left her hospitalised for a week. All of these problems led to her having 5 weeks off instead of the planned 3, before her next chemo sessions started. She discussed these problems with her oncologist, who admitted that they had given her a very aggressive dose as they were not sure what (if any) cancer cells may have been left following the surgery and they wanted to be sure that they were tough enough. They reduced the next dose by 25%, and her symptoms have been very much more manageable this time. She still has trouble fancying or enjoying any food, but not so badly as before. Her hair loss has slowed down a bit and the mouth has not been such a problem. Although she is still tired, she has forced herself to be more active and walk more each day - this has contributed to her having a far more positive attitude and more energy. She has even been out to dinner a couple of times and looks much better. She has also regained a few pounds in weight. Most of this has undoubtedly been down to the reduced dosage, but some is probably due to her being more mentally prepared for the chemo effects this time, and a very positive attitude. She has next week off before starting her 3rd round on the following Monday and will be encouraged to think that she is then half way through! I have in fact, just returned from a shopping trip with her and my daughter today, an Mum looks great! She still has some issues with 5FU, and is now on a daily dose of blood thinners too - but so far it's been nothing that she can't cope with. We all just hope that it will be worth it in the end and will help in our battle to beat this beast!!

Please feel free to ask if I can be of any further help, and I would also suggest typing 5FU into the search function at the top of this site for other people's experiences. Good luck to your MIL! Jacqui

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*DISCLAIMER: This page is an unmoderated forum, and the opinions expressed herein do not necessarily reflect the viewpoint of The Johns Hopkins Medical Institutions. Patients are advised to consult their personal physicians before making any medical decisions.
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