Diagnosis, etc.

This is the email that Saffron sent out to family about yesterday's doctor visit—it pretty much covers it all....


The cancer
*Adenocarcinoma (Dr. Copur says "This is the worst of the worst" speaking of cancers. One of the others on the short worst list was some brain cancers.)  
*Stage 3-4 (4 being the most advanced). It is locally advanced and going into the nerves. (there was no mention of lymph nodes).
*The blood marker right now is 99. They will test this again after the round of chemo. The objective is to get this number to go down.
*Dr. Copur was very clear in the fact that the tumor will re-grow (even if in remission or has been surgically removed after shrinking).
*In the future, there is a chance that the cancer will become resistant to the chemo, then they would need to change the type administered.
*The only pain that she is complaining about is back pain that she has had for a while, but did not realize it was related to the diarrhea symptoms. (That is understandable, as we've had similar descriptions with Darren's dad recently.) This still baffles Dr. Copur, as he sees much worse pain from most patients when the cancer has progressed this far. If/when the pain becomes unbearable, there are pain blockers they can give. (Our experience, these are mildly helpful, only dulling the severe pains.)
 
Chemo
*The chemo cocktail has 4 drugs in it. They are administered right in a row...90 minutes, 2 hours, a syringe (in the port), and then a 48 hour pump that will be worn in a small bag that can go around her shoulder like a small purse or with an elastic belt around the waist.
*To start with, there will be 4 rounds of chemo, each 2 weeks apart.
*After the round of chemo, a scan and cancer marker blood tests will be repeated.
*The desired result is for the tumor to shrink and put it into remission.
*The chemo will decrease the immune system, therefore, the eating goal during the next 2 months is on maintaining weight, not on gaining.
*She was told to keep a log of her chemo weeks so she can get ahead of the nausea with anti-nasia medication. Then, she can continue to eat during the middle of chemo administration weeks.
*Side effects listed - loose bowels, numbness, tingling, abdominal pain, sensitivity to cold foods/drinks, nausea. (nothing was mentioned about hair loss, and we didn't ask) I'm sure that's something the nurses will go over next Tuesday, as we were told there will be a lot of education that day.
 
Life Expectancy
*With this newer chemo cocktail, life expectancy has increased from 6 months to 10 1/2 months.
*If it shrinks (and best case scenario) they are able to operate for removal, then up to 2 years. Dr. Copur's words "If we can shrink and operate, maybe 2 years. We hope for a year or two, but not more than that."
 
Time lines
*CAT scan 12/26/2013
*1st visit with Dr. Copur 12/30/2013
*Kidney blast #1 12/31/2013
*Consult appointment with Omaha pancreatic cancer specialist 1/2/2014
*Biopsy #1 1/6/2014
*Kidney blast #2 1/13/2014
*5 business days of retesting on biopsy #1 with inconclusive results (phone call about this on 1/14/2014)
*Biopsy #2 1/16/2014
*Conclusive cancer diagnosis late in day on 1/17/2014 with instructions that Dr. Copur's office would call at the beginning of the next week with further instructions.
*Received a call in the morning of 1/22/2014 asking her to report for port to be put in the next day (without having seen any doctor for treatment plan/info/etc.).
*Annual cardiac tests and visit with Kidney doctor which had previously been scheduled 1/23/2014
*Consult/Treatment plan/cancer info with Dr. Copur 1/27/2014
*Kidney blast #3 & port install (during same anesthesia, 2 different doctors coordinated to limit the number of times for surgery/anesthesia) 2/3/2014
*Chemo treatment #1 2/4/2014
 
Diet
*Prescribed Megase to help with appetite and hopefully a bit more weight gain before treatment begins.
*Continue to push high calorie foods, whatever she wants.
*As she's still only able to eat small amounts before becoming full, the dietitian gave suggestions of power foods that will pack the most calories and proteins with a small portion size. Some suggestions were yogurt (Greek has more protein & calories), Carnation breakfast drinks, nuts, & cheeses.
*During times of sensitivity to cold foods, try warming up the Carnation (like hot chocolate). She liked this idea.
*Keep up eating proteins, as they will help with energy and weight gain/maintain.
*Stay away from tomato based foods, as they can produce extra acid. (instructed to maintain current acid-stopping medication)
*Spicy foods might begin sounding good as taste bud sensitivity will decrease. These foods may taste good, but spicy goes in and comes out spicy. (sorry for the ugly word picture)
 
Activities
*Maintain the current level of housework. This will keep up muscle mass.
 
Other suggestions we received
*Help out with a meal or two in the middle of the weeks of Chemo (Let me know if you are interested in this and I'll make up a schedule. If you are out of town but still want to help in this way, some places deliver.)
*Minimize stressors to her.
*Ask about how she feels instead of telling her what we think she should do.