Progression after stopping treatment
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Kim:
I agree with Lainy. If at all possible, take the trip with your mom. My husband Tom as CC and has lost a lot of weight and is sick most of the time but we just made plans for a month out to fly to Flordia to visit his niece. We are making those memories (God willing) and so should you and your mom.
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Hi Kim. Girl, if we only knew more we sure could change so many things in the treatment of CC.
We just came back from a 2 week trip to see all our kids. Teddy really pushed as it was a wish and goal for him. Came home 3 days ago and we has just slept a lot. Today he went to Mass and has said he is going to now push some more. I believe that the Cruise is a “goal” for your Mom. The very worse that can happen is you have to cancel and get your money back. I also believe it is wrong for anyone to withhold information at this point so I prefer to believe that they just don’t know like we just don’t know. I feel if the doctor said to go ahead with your plans do it. That is how our trip came about. They would not tell you to go if they thought she could not make it. Keep in mind that you will not be all that far from home that if something went wrong you couldn’t get her back to her doctor. Go for it or you will always wonder if you should have done it. Make good memories!My mom was diagnosed with a large tumor on her right lobe last May, had a resection last summer, chemo (gem/cis) through the fall/winter, and was declared “in remission” last Christmas Eve. She had a recurrence in June with multiple tumors throughout both sides of her liver. Had one cycle of gemzar last month. Her liver functions were always normal (amazingly) and the highest her CA19-9 ever went was 93. In June CA19-9 was 97, last week it was 525, and for the first time both AST and ALT were high at 118 and 111, bilirubin 0.9. This week liver functions were 268 and 303, and bilirubin high for the first time at 1.6.
The have decided to stop treatment. She is very weak, partly from being dehydrated and not eating enough. She’ll be getting IV fluids today, and has been really good about eating the last 24 hours, and drinking 1-2 Boosts a day. She is overweight, which makes it hard helping her up to go to the bathroom. She has a walker and now a wheelchair, and we’ve been using the bedside commode.
For those with experience, do you think she’ll recover slightly once she’s rehydrated and the chemo gets out of her system? One of the reasons I’m asking because the day after she found out her CA19-9 had quintupled in 2 months, she booked the entire family on a New England/Canada cruise departing Sept. 9. She so very much wants to take her kids, spouses and grandkids on this cruise. We’ll also have a belated birthday celebration for her – she turns 64 on August 30.
Her oncologist said he’d normally recommend hospice now, but in light of the trip in a month his goal is to keep her feeling well enough to perhaps make the cruise, then hospice after. I just don’t think the chances are good that she’ll be able to go on the cruise.
Please share your honest experiences about the speed of decline after treatment stops. The doctor and my sister (a hospice nurse and former oncology nurse) either won’t tell me or they just honestly don’t know. I do know the aggressive nature of CC, and realize that every case is different.
Kim
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