Topic: new to site advanced cc

my mom, 71 and great health, was just diagnosed with cc. liver is really large but they didn't say what stage. dr said her only option was low dose chemo to try to reduce size for comfort. her only symptom is abdomen pain and loss of appitite, i think more stress related. they want to start her treatment in few days. can't get into seattle cancer center for 3-4 weeks for second oppinion. any advice? I am 32 and the only child in the area?

Re: new to site advanced cc

Hi there,
There are a few of us in the Seattle area.  One of my doctors is Dr Phil Gold at Swedish Hospital.  How is her bilirubin count?  Does she need a stent?  Symptoms of cc is abdominal pain and loss of appetite, so imho it is the cancer, not the stress.

By the way, welcome to the site.  Feel free to ask questions, and use the "search" function on the top of this page for specific topics.

Re: new to site advanced cc

Ehebeler-

Hello!  I am not far from Seattle and, I hate to say to say it, but don't wait.  We all have life/time constraints and then there is getting in for the appointment at a busy hospital.  I have had to push and time can work against you.  I totally realize that it takes time just to orient that this is really happening, but it is my opinion that you just jump in where you are and figure it out along the way.  I became willing to ask strangers, who I will never see again to thank, for just about anything. 

I am also near your age and the youngest; I know how disorienting this can be.  Please ask anything and remember that CC is quite the adversary.

My best to your Mom, and to you.  (((hugs))) -ljg

Re: new to site advanced cc

Welcome!  I know this is such an overwhelming confusing time, but I agree with what Lisa and ljg have said.  I think she does need to get in right away for a second opinion and not in 3-4 weeks!  Where is she presently going for treatment?

My oncologist is also Dr. Philip Gold, at Swedish Cancer Institute.  I think he's very good and extremely knowledgable about CC and does specialize in GI cancers.  I know Seattle Cancer Care Alliance (U of W) has a number of good doctors as well as Virginia Mason.  Seattle Cancer Treatment and Wellness has recently moved to Renton and is now affiliated with Cancer Treatment Centers of America.  I know they have a philosophy of using lower dose chemo regimes that some people have found very effective and with minimal side effects.  I would start making more phone calls tomorrow and try to get in right away for another opinion. 

If you'd like to set up an appointment with Dr. Gold, just call (206) 386-2323 and ask for his office directly.

Please let us know how she's doing.  Sending all my best to you both.

Jean

Re: new to site advanced cc

ehebeler....Welcome to our site.  Possibly, some of your other siblings are able to help you with finding one, two or more physicians familiar with Cholangiocarcinoma/bile duct cancer.  The University of Washington Medical Center Seattle, Washington, www.uwmedicine.org comes to mind and as Lisa has mentioned, the Swedish Hospital is another option.  Certainly, the diagnoses given warrants more then one opinion.  At times, medical records, scans, lab results, etc., may be mailed to other cancer centers for evaluation.  The helpful members on this site may come up with the name of more physicians.
Sending tons of good wishes your way
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: new to site advanced cc

Dear Ehebeler, I am sorry to hear about your Mom's sudden diagnosis, I know how hard it is. I am near your age & Dad was diagnosed in Nov., with the same prognosis. We too were told that radiation & resection were not options, only chemo.... in fact the original prognosis was not even for chemo- Dad was told to go seek out experimental treatment as the chemo would likely not work either. From there, we located a half dozen leading cc docs. from across the country for second opinions. We called the offices & spoke with either the docs or their secretaries & they agreed to look at Dad's scans & paperwork. We had the hospital put this stuff together and FedEx it out for overnight delivery (this way there is a tracking number). Because the imagery can't be sent in digitial format online, due to resolution issues, it must be uploaded by the hospital to a CD- hence the need for FedEx. After a day or 2, I'd call the offices to ensure that the packages arrived OK & to find out the Doc's opinions.  The institutions were very amicable to this.  95% of the docs said that chemo was the only option due to the size & proximity of the tumor to a major vessel. However, Dad secured a team at the Robert Packer in Sayre PA that said they'd attempt resection if they could shrink it via radiation & the radiation is due to start next week.  He's been on chemo since Nov.

I can provide you with contact information for specific principals at Duke, Sloan Kettering, Fox Chase, the National Institute of Health (NIH), Roswell, the Mayo Clinic, Roswell, Wake Oncology, & the Guthrie- if you should want to follow up with any of these.  If you're interested, click on my name & drop me a note offline, so that I can respond to the e-mail with an attachment of contact documentation.

You and your Mom are in our thoughts.

Best,
Tess

Re: new to site advanced cc

thanks to everyone for the suggestions and support. mom starts the low dose chemo tomorrow and we will spend the afternoon getting copies of all her charts for the dr.'s to review and possibly help. i am actually a bit frustrated because they haven't told her what stage her cancer is in or anything. taking 2 of my aunts in with us tomorrow so they can help me get more answers. when we were told yesterday her diagnosis and that there was really nothing that could be done we were a bit taken back by it and i couldn't think of any questions to ask. then i got home and felt like i had very little info. if you have any suggestions for questions to ask when we go in tomorrow i would appreciate it. as soon as we get copies of her charts i am going to call everywhere i can and get her in somewhere. thanks again, erin

Re: new to site advanced cc

ehebeler.... I am glad for you to be accompanied by two of your Aunts.  Much information will be given to you therefore, you will need the support. A notepad or recorder is a must to take along to the doctor

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: new to site advanced cc

Hello Erin, best of luck today. I sent you an attached list of contacts, offsite. To piggyback on Marion's suggestions, per our quest in obtaining second opinions, various doc offices- pending the potential procedure we were seeking possible candidacy for, wanted to know some of the following: Dad's bilirubin levels, views of upper & lower body CD scans, explanations for why the docs say they can't resect or pursue radiation, size of tumor & precise location, blood work & tumor market info (CA19 numbers), insurance we carry, etc..  It also helps to have an idea of exactly what your oncologist's treatment plan is (including anticipated meds/chemo/radiation/mix), such that you can relay that to the other offices as you seek second opinions- to determine if their strategies would vary.  Per our experiences, the notepad is a great idea. Also, you can always call the office back later for additional clarification & you are always in the right to ask any and all questions you have.

Wishing you and your Mom & aunts the best today.... keep  us posted!

-Tess

Re: new to site advanced cc

Erin,

You have already gotten a great welcome & a lot of good advice so I will just add my best wishes for you & your family. Good luck today.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: new to site advanced cc

dear ehebeler, welcome to a great site here you can get some answers...im sorry to hear about moms condition...but right now you have to be your moms advocate, the questions suggested by marion are the ones i would ask...be insistent dont take no for an answer...i have found out that some doctors will do what others wont....keep seeking out help and be sure you keep all of your moms records..i wish i could add more but but im sure you will find the doctors and i will pray you your mom and you ....ron

Re: new to site advanced cc

if anyone has any info on nutrition i would love you to e-mail me. we are trying all things available right now. mom just started GEMZAR on friday.

Re: new to site advanced cc

A lot of people have really liked the book "Anti-Cancer", which is available on Amazon.  I think that book includes nutrition information as well as a lot of other helpful information.

Re: new to site advanced cc

Hello Ehebeler, Dad struggled to eat much on Gemzar because it affected his taste buds so strongly- the secret for him was to suck on a lemon wedge before his meals to help with the salty/metallic tastes. Of course this is not a side effect for everyone, just thought I'd pass it on in case it may help your Mom.  It seemed to help Dad, along with lemonade & a mouthwash rinse.

Best,
Tess

Re: new to site advanced cc

These are some of the recommendations from the NIH and NCI:
A diet high in enough in calories to keep your weight up and high enough in protein to rebuild tisses that cancer treatments may harm.  People who eat well can cope with side effects and fight infection better.  Also, their bodies can rebuild healthy tissues faster.
The National Cancer Institute's booklet:  Eating Hints for Cancer Patients: Before, During and After Treatment provides many tips.
You may ask for a free copy at the doctor's office or, call the Cancer Information Service at:  1800-422-6237.

Good Luck and best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER