Q’s re: final stages, jaundice and 3rd opinion

Hi Sunny68, my mom also has kaiser. So I have dealt a lot over the last year with Kaiser. Even though everything that could could wrong, did go wrong, I still feel they did as much as they could. My mom went in for sgallbladder pain over 2 years ago…and 2 years ago the doctor (different doctor than my mom’s regular doctor) told her she just needs to eat better and the pain will go away. A year later after the pain persisted, she went back again and her doctor said you tell them you want your gallbladder out. Then when they went to take out her gallbladder there was a tumor attached from the gallbladder to the liver…and here we are now, a year later. The only difference in our cases in my mom was 62 at diagnosis.

Kaiser is unfamiliar with this type of cancer, however, we did do our second opinions at USC Norris where they do have specialists in CC. We would go there to make sure that the Kaiser doctors were on the right track. And they were. Dr. Lenz did advice to change treatments around a little bit. For example, break the chemo up with radiation, so my mom wasn’t doing too much chemo at one time. And Kaiser was more than happy to take the suggestions.

It was not difficult at all to get my moms medical records. We may have had to go to 2 different places. You fill out a form and give them $10-$15 and they will either print it up for you or give the information to you on a disk. However, it does take about 7 days to get it. But again, it takes a while to get in for an appointment. USC was great about getting my mom in ASAP. At first they wanted to wait, but whenever we needed they got us in within a week. I am sure UCSF will do the same. Our second opinions usually cost anywhere from $300-$500, depending if they charged us a facility fee. We tried to get Kaiser to pay for it, but they wouldn’t. However, they are suppose to send you somewhere else if they are unable to treat you. City of Hope wanted $1500 for an initial visit.

As for why your mom will not swallow, I can not give you any advice on that. My mom hasn’t had that problem. She doesn’t like to eat. I am passing on this link that I found after my moms last couple of doctors appointments. Both doctors (primary and second opinion) gave my mom only a couple of months…another week and she will have outlived their timeline!! But I found this interesting. I don’t like to look at it too much, because sometimes it puts me in the wrong frame of mind. Meaning it doesn’t put me in the fight mode. But here is the link:
http://www.a-good-dying.com/physical-stages-of-dying.html

I found it interesting as there were journal entries to go along with it. I guess I was looking at it because I didn’t know what to do about work and who would take care of my mom. Friends told me to go ahead and take as much time off as I can right now. I am currently taking off 2 days a week to care for her and my dad is takes the other 3 work days off of work. She is doing great. She needs to have her belly drained again, that puts her in some pain, but I was able to take her out last monday for a manicure and pedicure.

Please don’t let them persuade you into not having a second opinion. At least you will know you have done all you can. My moms second opinion doctor perscribed a medicine to help prolong my moms life, and her primary doctor was going to try a harsher chemo (knowing that it will not work), but my mom decided to go with quality of life…she is just waiting for the quality to set it.

Do be discouraged about getting your moms paper work together. It is a little task with trying to get them when you want them, but it really isn’t too difficult. Kaiser has everything right there.

Please keep us updates and I’m wishing you all the best.

Welcome, Amanda to our wonderful family of the most courageous and caring people the world over. As if one disease is not enough? About the swallowing I cannot recall that on our site. I can say however that my Mom was 94 and had Alzheimer’s at the end. We had her in a private care home and they told us that eventually with Alz. a person forgets how to do everything, even to swallow. The other thing of course is that for some reason it hurts her to swallow. My Dad at 90 had to have his esophogus stretched as his ‘throat’ was closing. It’s a simple procedure much like an Endoscopy. As for the Jaundice it appears when the bile ducts are blocked. I think for liver problems other LABS have to be done. The best thing I can tell you is your Mom really needs to be seen ASAP by someone else. Your story is such a hard one to call. Can you possibly go see another ONC in San Jose for just a consultation? At least it would give you all peace of mind and you would know if you are doing the best and right things for your Mom.