Need advice from other patients
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Hi MN,
Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your mum. But I am glad that you have joined in with us all as you have come to the right place for support and help. I can’t really add anything to what the others have said to you but I wanted to stop by here and welcome you. I hope that you will keep coming back here and keep us updated on how your mum is doing.
My best wishes to you and your mum,
Gavin
Thank you all for your suggestions.
Marions, yes my mom goes to see Dr. Lenz, who was also my moms Dr’s mentor. We take his info and bring it back to my mom’s Dr. at kaiser. I’m glad to hear that we may have the right information coming from somewhere. Dr. Lenz did say he treats lots of cc patients.
hi mn and welcome…..i have to agree with lainy… i have never known just a few day treatment… i would gather up all the records i could and send them out to doctors that have treated cc before, this is very important the doctor should be knowledgeable about this type of cancer and know how to treat it… then i would make myself knowledgeable about cc and any treatment, test and generally anything that the doctors suggest…knowledge is and can be a very powerful weapon……my best to your mom and you…..lucille and ron
MN…..a warm welcome from me also. USC Norris treats quite a few patients with this disease. Has your Mom consulted with either, Dr. Lenz or Dr.Anthony B. El-Khoueiry?
Dear MN I am wondering if you can at least get another opinion from another Facility, like Mayo Clinic in Rochester, MN. Like Maria, I have never heard of a few day treatment. I hate to say this but it sounds like Mom is not getting proper care, especially when the doctors admit it. You must be with a doctor who knows CC! Can you collect all her records and send them to a top facility just for a consult? Something needs to be done as CC unfortunately does not take a vacation. Please let us know how Mom is doing.
Thank you Maria for your your information. She (and us) believes she needs more time on this medicine. And research that I have done shows that tumors always look worse before it gets better. Thank you for sharing your positive story. I appreciate it.
I wish we had the opportunity to check out other facilities. At least her doctor is more than willing to listen to what the other doctor advises. We also went to the other doctor to make sure they are doing what they should be doing for a treatment plan.
Again, thank you.
I had my diagnosis of intrahepatic CC April-2010. Done a lot af scans since that. About a month ago I had the opportunity to look at the scans and was surprised to find out that the tumors in my liver were growing for 2-3 months before the route changed and the started shrinking.
To me it seems that it can take a while before you see changes. First of all – in a scan you donI’ve been here on this website reading for approximately 9 months now. I would just like some advice on where I go for assistance or how to question the doctors. Here is a brief history.
My mom went in to have her gallbladder removed in October 2010. The were unable to remove it because a tumor was attached to the liver. At first she was diagnosed with liver cancer. After another month of tests she received the diagnosis of CC and had her gallbladder and 1/3 of her liver removed. In January my mom began Gemzar and Xeloda. We went in for a second opinion and the DR suggested that we break up the chemo treatments with radiation. So after three treatments my mom did 30 days of radiation. Her follow up CT scan showed that one tumor returned to her liver and one on her pelvis. In June my mom started on a new chemo treatment which consists of oxaliplatin and leucovorin. They give this to her at the hospital for approximately 2 hours and then send her home with a pump for 2 days. After that week is up she goes in for her white blood cell shots. After two treatments of this her tumor markers went up really high…to 6,000. After this they did another CT scan which showed on tumor has grown and the other one has stayed the same. The Dr. wanted to give this treatment up and start on the last option on chemo. My mom said no, she didn’t feel that they gave this chemo enough of a try. We do go to USC Norris for a second opinions and treatment options which we then take back to her dr.’s at Kaiser. Her doctors do not have a lot of information on this type of cancer.
Unfortuntely my mom does not have the option of going to other doctors for treatment options. My questions for you is how long would you give your chemo a chance to work before giving up on it. My mom feels her doctor is too ready to give up and move on to the next chemo. But she knows this would be her last option. Her surgeon said he would not operate again.
She has been pretty down the lat few days. Her good days is when she is doing the chemo. After that she feels pretty miserable. Other than being sick from chemo, she has been great. I see so many posts with people in and out of the hospital. However, she is no where near doing the activities she use to.
Any suggestions or advice on where to go from here and what to do…or treatment options that worked for your or your family members would be helpful. Looking through old posts I have a couple of things to discuss with her doctor. Thanks in advance for your advice.
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