stage IV and hospice
dvtra...@gmail.com
-She was diagnosed Thanksgiving 2013 with Stage IV PPC/Ovarian after having her right lung drained of fluids twice and a procedure where talc was added to glue her lung to the cavity wall to prevent further fluid buildup (that has worked well) CA125=19,090 at dx
-She did three rounds of chemo and CT seemed good and CA125 came down to ~8,000. Debulking scheduled for February
-February/March - Debulking surgery was a bust. When she was opened up, despite the CT and CA125 being better, they found the cancer all intertwined and nothing could safely be removed. When in the hospital for 3 weeks she had to have an NG to remove fluid from her stomach. Discharged with chemo to restart after she recovered from surgery. In March she was having troubles breathing and was admitted again. A bowl blockage was found. She went back to surgery and had a colostomy done. But they weren't able to unteather much intestines to pull up and make a normal stoma (no resection was done) so it looks like an inny bellybuttom. They also did a PEG tube for decompression purposes (not for feeding at all) to avoid needing NG tubes again.
-Chemo resumed in April but CA125 had grown to 27,320
-April to September: The chemo itself caused no side effects besides hair loss, weight loss and neuropathy. The ostomy functioned well without problems (minor normal bowl function returned as well, a sign the chemo was shrinking things). The PEG tube however leaked and the tube fell out multiple times; even tried a Mic-Key button but those popped out also and the site never quit leaking around the tubes. To the point an ostomy back was placed around.
June's CA125=12,900 (it came down from April)
August's CA125=8,400 (much better)
-October we got a second and third opinion about the leaking PEG tube. She wasn't absorbing nutrients with the extensive leakage (weight in November was 180, September dipped to 110 then stabilized at 120). The stomach acid was eating her skin badly (envision a burn victim, it looked that bad). Decision was made to remove the tube and place a new one in a new site. The initial site was supposed to slowly close on its own. That was done Oct 9th. A small bowl follow thru was done Oct 21st and a blockage in the stomach was found.
-Now, November 1st 2014. The initial site did not close; thru protonix and zantax the acid has been reduced but still leaks. She was put on TPN for nutrition after surgery (Oct 9th). Regular chemo and CA125 was scheduled for Oct 28th but chemo was canceled indefinitely. Her CA125 is up to 18,400; she's become platinum resistant so no more treatment.
-She has entered Hospice care with 4-6 weeks to live, mainly based on failing nutrition since she was taken off TPN and increase cancer growth/spread without chemo. She's able to slowly eat comfort foods as tolerable and drink what she wants. The two stomach drains she has shows and liquid she drinks comes straight out. She is still urinating tho so some has to be absorbed.
QUESTION
-If shes drinking normally, managing to tolerate small amounts of food (pudding, jello, cookies so far) and has no pain from the blockages, I would think she'll survive much longer than 6 weeks right?
I've taken FMLA to stay with her but I only have 6 weeks left (I used the rest with her surgeries). If she survives longer I don't know what I'll do as far as being out at work. Yet I want her to of course live as long as possible. I just can't not work for forever painfully waiting for the end. It's such a difficult situation.
Amy Miguel
--
You received this message because you are subscribed to the Google Groups "Primary Peritoneal Cancer" group.
To unsubscribe from this group and stop receiving emails from it, send an email to primary-peritoneal...@googlegroups.com.
To post to this group, send email to primary-peri...@googlegroups.com.
Visit this group at http://groups.google.com/group/primary-peritoneal-cancer.
For more options, visit https://groups.google.com/d/optout.
