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Pancreas Cancer

Raymond was posted 10/25/2013 12:35 am by Shelley in AR
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You are correct the dosage of the chemo meds is by weight, it is actually written on dads order Gemzar 600mg2 (the 2 is little) when I asked the MDA pharmacist about this he said it is a formula based on patients weight, body mass index and something else (I did not attempt to figure it out after that) I just so he was getting enough. I had to really watch these local folks to make sure they gave him the right chemo meds, right dose, right infusion rate.

You are correct the normal procedure for these two drugs is to be given 3 weeks on 1 week off. I have no idea why the oncologist ordered it for my dad to be given every other week. My dads cancer was stage 2 or maybe 3 when diagnosed depending on who's criteria you look at. Mostly oncologist just referred to it as locally advanced because there was vein involved.

Doing the chemo every other week had nothing to do with the radiation because when he started chemo last August we did not know if he would even be a candidate for radiation. MDA said they would not even consider radiation until he had 4 months of chemo. the only response I got as to why the chemo would be biweekly (i knew this was not standard protocol) was 'because that's the way I do it' per oncologist.

When we went to MDA we did not even have a confirmed diagnosis, 3 GI doctors locally 3 biopsies and no confirmed diagnosis. Dad even had a CT of abdomen and other test locally and pancreas was noted as unremarkable, they saw no tumor.

My dad was very active and healthy. He had just turned 65 in April, was diagnosed with Diabetes 2 years prior to PC diagnosis. I now know that this was the first symptom of the PC. In dads case the diabetes was a symptom of the PC and not a side effect. All the literature I read after diagnosis says that anytime you have patient with sudden onset diabetes over 55 with no family history that doctor should be alerted to possible PC.

Yes, I am still extremely angry with his PCP for not being more alert to the fact diabetes was a symptom of PC and not doing more test. If we had found this 2 years prior it would have made a difference in life and death.

With no other testing showing any problems with the pancreas the main indicator we had was his CA 19-9 was elevated, I think 876 was the number and his liver enzymes were elevated.

From July 2012 through October 2012 were really rough, dad stayed sick with one infection after another from the PCT tube that had been inserted, When we went to MDA for check up in October and surgeon realized the tube was still protruding from his side and learned of all the infections and sepsis he called GI doctor and had it removed and the metal stent placed. His health improved dramatically and rapidly after getting the stent. He had only the slight neuropathy from chemo. It did cause him a rash and itch but steroids stopped that but caused his sugar to be high for a week or so. Nothing that was not managed with his insulin. A month or so before the PC diagnosis his sugar had become uncontrollable with oral meds and he had to start on insulin. the chemo would give him a low grade fever and cause fatigue 3 days after infusion for a couple days.

December visit to MDA, CT showed slight decrease in size of tumor and his CA 19-9 was down to 62. Consulted with radiation oncologist and he said that where the tumor was dad was a good candidate for the IMRT radiation and the Xeloda oral chemo was given because it increase the effectiveness of the chemo so they said. So 5 weeks of radiation at MDA and then home to wait 6 long weeks and see if tumor size decreased with no treatment of any kind. No follow up chemo, nothing.

They had warned that the radiation could have bad side affects however my dad had only a little increase in fatigue. they kept us watching and waiting for the side effects to hit saying it would have cumulative effect and could be week 3 or 4 before he had nausea, vomiting, diarrhea. But he went the entire 5 weeks with no side effects. He would need to nap during the day or go to bed early but that was all.

He came home on February 21st and has been doing really well. He is up and active every day. He completely gutted and remodeled his kitchen. He has mowed 10 acres all summer, tilled, planted and tended a garden, built flower beds, built 2 new decks on his house with roofs, built 3 stone walkways to the house. He goes to town and shops if he cant find anything to work on just to be out and busy. His latest project is a long tree trimmer and he has spend 2 weeks cutting high limbs off trees loading them moving them to the burn spot and unloading them. I really hate to admit it but he has tons more energy and stamina than I do and I'm 21 years younger than he is.

His last CT was a month ago and the results were 'Miraculous' according to MDA oncologist. His tumor is now 3 x 1.7cm and was reported on CT scan in December 2012 as 7.1 x 3.2cm. the measurements seem to change with the change in radiologist that read scans. However considering this big decrease in size following radiation is such victory.

I learn more information with every new scan. things that have not been revealed in the past come out with each new scan. We of course got the 3-6 month prognosis locally at the start of this nightmare. Then at MDA medical oncologist told us 6-9 months with no treatment and 18-24 months with treatment because this type cancer is very aggressive and spreads fast.

The CT report from last month scan is the first time I have seen reported the tumor as 'poorly defined' This is a very important factor in prognosis, tumors that are poorly defined research has shown have the poorest survival rate and poor response to treatment and do tend to spread quickly.

However on November 6th will be 16 months since diagnosis and my dad is doing well. He has actually gained weight since diagnosis. Appetite is normally very good. He never complains about hurting anywhere. The only thing we have had critical in the past 8 months was a some type bite on his arm, maybe a spider, but the antibiotics did not work fast enough and he got septic. His pancreas is mostly dead from the radiation so he has a difficult time controlling his sugar, pancreas dumps a lot of insulin at once on occasion and makes his sugar go crazy and you never know when it will happen.

The only other weird thing is he often complains that meat does not taste right to him and he goes through spells he will not eat meat.

His response to the radiation has everyone surprised and speechless except the radiation oncologist who set out with the intention of 'curing' him by killing the tumor with the radiation. His CT scan still show not mets to any other part of his body, not even lymph nodes.

I can only say that God heard all the millions of prayers and he answered them in a mighty way. However I am always on guard, he does still have a tumor, he is on no treatment to attempt to kill the remainder of the tumor. Medical Oncologist at MDA says we just keep going with no treatment until tumor starts to grow and/or spread. Which is a plan Im not real comfortable with. I would like to see if the remainder of the tumor can be killed off. Since I'm not the doctor I don't get to make that choice.

Wishing you all the best with treatment for your wife. I know its an awful journey to be on. I hope some of what I have shared is helpful, but dads case has been so different that its hard to compare.


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