Hi Lainy. I appreciate your advice. We actually did look into MD Anderson but they asked for a HUGE sum of money for down pay since my mom doesn't have health insurance or medicare. So she is currently at the Methodist referred by a former pathologist from MDA. As for hospice, we have decided on Houston Hospice and now just waiting for the discharge from the doc. In the meantime, mom's swelling in her abdomen and legs have gone down a bit. I think Lasix is working its magic in addition to no more fluids for the past 3 days or so. I've been reading about swellings for those who are about to pass in the near future and it really scared me. So my brother and I have been religiously massaging my mom's legs, feet and back for the last several days.. and when we see the swellings subside a bit, I can let out a brief sigh of relief. I know its temporary but it really helps to go on everyday. Its good to hope right? Hope you have a great weekend, Lainy and everyone else on this awesome site!
It's been while since I last posted something on this site but a lot has been going on. Since mom's last cycle of Gem/Cis on January 17th she's been going in and out of the hospital. Emergency to ICU to home and then all over again for the last couple of months or so. Three weeks ago, mom's oncologist told us that she would like for my mom to start taking Xeloda+oxailplatin while the window of opportunity is still open as soon as her infections in the liver calms down. Mom was discharged three weeks ago from the hospital with take-home antibiotics. Then just last week, we had to bring in our mom back to the hospital due to low blood pressure combined with high temp of 102+. Found out she has C-Diff (common bacterial in bowel) so she's been on Flagyl for the past week now. Then this week, we were told that any chemo would put my mom at much more risks so basically told her we should look into in-home hospice care. We were told last week that my mom has less than six months to go with or without chemo but today, we were told she has maybe a week left. I don't believe everything the doctors say but its left a big hole in our family's hearts. We don't want to lose hope but I can't help but to be discouraged. So now we're looking into hospice care in Houston. I was wondering if anyone's had any recommendations. The hospital's social worker is looking up options for us but looks like there aren't too many to chose from. I was also wondering if anyone's had or going through hospice care for themselves or for their family who can pass on some knowledge. We've had a couple consults but I am hoping for personal testimonials. I don't feel like this is the end... Maybe I'm in a denial but any thoughts on alternative meds, hospice care, doctors/hospitals would be great.
Btw- I just bought some Essiac from Vitamin Shoppe and some Korean Ginseng extract in hopes that it will elevate my mom's appetite. I will keep you posted.
sorry to hear about Wayne. I hope you're doing better for he is watching over you.
Thank you Kim for your insight and your kind consideration! I read your story and I was in awe! Thank you so much for sharing your story! It was truly inspirational! and Marion, thank you for the helpful link!
So here's an update. Mom finished her cycle 2 on 1/17, Monday. She was very tired and definitely her condition was different from previous treatments. Her CA19-9 level elevated as high as 834. Then following Wednesday, mom had a fever of 104.8 so we hauled her to the emergency room and she is still in the hospital.. its been 4 days, going on fifth. Found out she had an infection in her blood in addition to a blood clot in one of major vessels that passes through her liver from her heart, which in turn, she now has to get blood thinning shots called Lovenox every 12 hours. On top of that, mom's CT showed that there's still a progression in tumors and therefore we are back to square one. We were given options 1. switch chemo treatments to 5FU + oxailplatin 2. stop the treatment altogether. Though we are very discouraged, our mom has decided to go forward with a new regimen of treatments. We were told we have about 15% chance of chemo working on our mom, but we still have hope.
Mom's lower abdomen's been swelling up in the last 3-4 days, she's scheduled to get an ultrasound tomorrow morning to see how much fluid had built up. One of the attendee during weekend said that we would need to talk to our oncologist on Monday when she returns, but he believes the swelling is from her tumors.. while another attendee said that the swelling is from her blood clot. Excess fluids not being able to "flow through" due to clot is building up, causing the bloating of the abdomen. I will have to get this straightened out tomorrow morning once her oncologist returns, but has anyone experienced or experiencing the same symptom out there? If so, I would really appreciate any insight.
My mother who is 63 years old at a stature of 5 foot tall and 78 pounds decided to go forward with chemo procedure. A combination of Gemzar and Cisplatin - 2 weeks on & 1 week off. Our family was initially weary of chemo due to potential side effects and some dangers that could present during and after treatments especially following her major weight loss post-Whipple procedure that was done in early May of last year. However, mom decided that she wanted to give it a chance with God and her family by her side.
My mother started her first chemo on 12/20- Cisplatin 30mg/Gemzar 1250mg. Prior to her chemo meds, she was given Zofran (25mg), Dexamethazone(10mg) and Ativan(0.5mg) to prevent nausea in addition to tons of saline all via IV through a port that was surgically inserted. Following mom's first chemo, as you can imagine, our entire family was on a wait-and-watch mode all day and everyday. But so thankfully, no nausea and her appetite remained.
Then mom's 2nd chemo was a week after following the same regimen with WBC of 3.61 and CA19-9 at 480. My mom's oncologist thought the CA19-9 level was really elevated but decided to continue with the treatment since its still way too early to tell especially with our mom doing so well after 1st treatment. By the end of 1st cycle, our mom continued to have appetite and walked for at least 30 minutes to an hour daily.
1 of cycle 2 was on 1/10. Mom's WBC rose to 4.1 however her CA19-9 level was even more elevated at 592. Nonetheless, mom's condition overall has been pretty positive. She even weighed 1.5 lbs more since her first chemo 3 weeks ago. When we asked about mom's CA19-9 level to her oncologist, the doc said its still too early on in the treatment to switch over to other meds. So we decided to finish cycle 2 (2 of cycle 2 scheduled for 1/17) and then get a CT scan to see the activities of tumors. Mom's oncologist also commented that judging by my mom's overall condition, it seems that the treatment is working for her however, sometimes, when chemo is actually killing off the masses, it releases proteins that goes into the bloodstreams, causing an elevation in CA19-9 level. Hoping that is what is happening and not tumors growing.
Though our family has been in great spirits and very thankful for our mom's overall well being her CA19-9 level got us in a worrisome mode again.
Has anyone else experienced similar situation? and if anyone could share anything to do with CA19-9 level and actual tumors, your comments would be greatly appreciated!
Hello everyone. I am new to this site and I am learning so much already! My mom is 63 years old and was diagnosed with CC in March 2010 and underwent Whipple in May 2010 overseas. Since then, we returned home (TX) and went in for a followup in Sept. Her bilirubin results came out a little high but was retested and seemed to be normal. In addition, her CA 19-9 level was at 33 (normal). However unfortunately, a week before Thanksgiving, she vomited blood and was taken to an emergency room. They did all kinds of tests, but was unsuccessful at finding the culprit. While she was in there, a CT was performed and thats when we found out that the tumors have returned, metastasized to her liver and lymph nodes at stage IV. We received 3 opinions thus far from 3 different oncologists locally. 1) Xeloda alone 2) Gem/Cisplatin & 3) Gem/Oxaliplatin. My mom only weighs 79lbs post surgery so we are greatly concerned with her receiving chemo. So we are currently trying to decide where and what type of chemo my mom wants/can receive. If anyone has any thoughts on any of the options we were given, your inputs would be greatly appreciated.
Everyones posts have been tremendously encouraging and informative. If my mom decides that she is going with Gem+ another med, I will definitely bring up about the heating pad! Mom's very fragile and gets easily cold.. so heating pad sounds like a great idea.
Hope everyone had a great weekend.
Thanks everyone! I will definitely check with my state for health programs and drug companies. We are currently trying to decide on what type of chemo to chose and when. I will keep everyone posted if I come across other options.
Thank you, Christie
Topic: No insurance and not old enough for Medicare (4 replies, posted in Insurance)
Hello. My mother was initially diagnosed with CC in March and received Whipple Procedure out of country. It was a successful surgery however, the tumor has returned only six months later and has metastasized to her liver. My family decided that it would be best if our mother stayed home in Texas and receive chemotherapy. But she has no insurance with only pending SSD. My brother and I have been actively looking into insurance companies, expedited process for SSD and medicare but were unsuccessful and was told that medicare is out of the question at this point since our mother is 63. I wanted to ask if anyone might be in a similar situation? Any thoughts would be greatly appreciated.