What a Roller Coaster Ride

Unknown

I hope everyone had a wonderful, wonderful holiday surrounded by people they love, hope, and lots of joy.

My own was not so great but I am ever so thankful that I was surrounded by the three most important people in my life....Michael, my son, Bert, my terrific husband, and my couregeous and lovely Mom.

Briefly, Bert has been going to the bathroom no less than 15 times a day!!!!! since last Thursday before Christmas, which was his very last chemo treatment and they reduced the dosage on that one even more...not on the 5fu...that stayed at 1000 mg, but the leucavorin was reduced to just 50 mg. The onc said that his body just can't take any more. Anyway, his bathroom excursions have been nothing but water...and more water, gas, cramping, you name it, he had it. To avoid another hospital stay for severe dehydration as well as colon infection coupled with small intestinal blockage, he didn't wait this time and I got him in to see his onc on Monday morning, December 22 and all test/blood work were good except he did need to be hydrated, potassium levels were extremely low, and he was exhausted. From that point forward, I had to give him three injections (no more oral meds) of Sandostatin a day in his abdomen in an attempt to control the diarrhea. Yesterday, I think the shots finally kicked in and he was down to 5 or 6 BM's a day. However, he could not even walk up to the bathroom sometimes without complete exhaustion taking over and has lost about 10 pounds. Today was the first day that Bert was better. Amen! The shots must have finally kicked in. He slept through the night until about 4:00 a.m. and woke up with a ravenous appetite and food is staying with him...strength and energy are slowly returning. I am so grateful and if this continues, which I pray it does, we are both prepared to go forward with our new onc on January 8. As most of you know, we start seeing Dr. Lenz at USC/Norris Cancer Center on January 8. I must admit that Bert was pretty much ready to throw in the towel and not proceed with any more chemo, even though Dr. Lenz strongly feels he should have more. Technically, Bert is done. He has completed the three cycles, six weeks each of 5fu/leuc...however, doseage had to be reduced in his last six week cycle and Dr. Lenz recommends no less than 6 months of chemo, preferably with Oxaloplatin as well as the 5fu/leuc. If the diarrhea can be better controlled, I think Bert would take chemo "forever" as he had absolutely no other problems with the 5fu/leuc cocktail. We will now wait and see what the new regime will be starting January 8, if there will be any more chemo (which would then include oxaloplatin...the stage iv drug that Dr. Lenz feels all high risk stage III's should have from the get go. I guess what I need to do now, for some sanity in my life, is to trust Dr. Lenz and to trust in God.

I'm sorry, I didn't mean to go on and on, and I truly hope the days ahead are good for each and every single one of you.

Stay healthy and take care.


Monika

lizzymc

your right a roller coater ride at that. I too was on the same drugs. They added dpt11 to mine, plus pre meds, and after meds. It took a long time for the dirrahea to go away. I also had severe dehydration.I'm just recently declared cancer free. My last chemo session was in Nov. I have been out of chemo for a month. I still face emotional problems,and side affects of chemo. Some of them have disappeared, I'm still dealing with others. New things every day. I'm moving forward, with a new beginning.lizzy

spongebob

Ahoy, Monika and Bert -

Glad you had a good (at the risk of being politically incorrect...) Christmas. Ya know, the frequent bathroom trips (albeit not on the order of 15/day, but certainly 5 or more/day) will probably be with Bert for the rest of his life. We semi-colons just don't have the storage capacity you "whole" colons have - but we try not to hold it against you.

I make the joke with people that I can no longer be called "anal retentive", it is a medical impossibility.

I wonder if it's something with the holiday foods we eat - I have had to practically put a cot in the bathroom myself. My significant other has to make a reservation if she wants to use the facilities (we live in a smallish 1 bath condo)!

Anyway, glad everything appears to be going well.

Best regards for a healthy and prosperous new year.

- Sponge

aleftina

I had severe diarrhea with 5FU/LEU and radiation together. It was awful. Thank God I had a baby and knew how to treat a "diaper rash". But with Oxaliplatin/Xeloda it the constipation. You thougt you were on the roller coaster before!

pattieb

I'm glad to hear Bert is feeling better. I have the opposite problem which can make me very sick if I don't go, also I have such bad gas pains they knock me off my feet and I have tried just about everything to get rid of them. Heres hoping that all goes well with the dr and treatment. Hope you both have a very happy new year, I'll be thinking about you.
Pattie

2bhealed

pattieb said:

I'm glad to hear Bert is feeling better. I have the opposite problem which can make me very sick if I don't go, also I have such bad gas pains they knock me off my feet and I have tried just about everything to get rid of them. Heres hoping that all goes well with the dr and treatment. Hope you both have a very happy new year, I'll be thinking about you.
Pattie

hi pattie,

have you tried probiotics or enzymes for the gas? Do you have trouble with yeast infections at all? Could be causing some of your discomfort perhaps?

peace, emily....you know....the radical :-)