Topic: I don't get it

I don't undestand why my mom is not responding to treatment.  It's great to read about the positive stories on here but it's not the case with my mom.  She's only been on gemzar and then xeloda which we are told are the two strongest chemos to treat this cancer.  Neither one worked. It seem like doctors are giving up on her and it's frustrating.  They don't recommend her trying clinical trials because it could do more harm, they don't suggest radiation either because they feel it could do more harm. They sound more positive about her doing nothing and this was both at Mayo and her chicago based oncoligist.

I am working while taking care of my mom at home but I spend the day trying to think of where to take her next and who can help her (when I should be working of course). I don't know what to do next.  I'm sure  many of you feel this way and I just had to vent.

Her CC has matastisized so is there any hope?  Thanks for listening ;-)

Re: I don't get it

Lisa,

I feel there is always hope.  You never know what tomorrow will bring.  I feel your frustration and you have every right to vent.  I cannot answer your questions about the matastisis (?).  Every cc case seems to be unique.  I will pray for you and your Mom.

Karen

Wishing all God's blessings!

Re: I don't get it

Lisa, that is really sad.  My sister's cancer has metastasized to her bones and lymph nodes and other organs but she is doing gemzar and xeloda and we just did her first CT scans and it has shrunk some of the tumors. 

She had 3 treatments and then we did the CT Scans.  It was very encouraging so we are continuing on with that treatment.  I wish it was the same for you and I have no idea why it works for some people and not others.

Where has your mother's cancer metastasized to?  And did they say how long she has?  They gave my sister less than a year even with chemo.

Re: I don't get it

Tanoland,

I've read a lot of your posts and feel your pain.  So glad your sister received some positive news though.  That's great, Hang in there ! My mom has never been offered 2 chemo treatments at once so that is my next question when we talk to her doctor on Monday.  I'm finding more and more information as I research CC. I should have started my research back when she was diagnosed in October 07 but I think we were all scarred to find out the truth.  Last week when we were at Mayo they gave her 6-12 months to live. Her Oncologist here in Chicago has never given her an "expire" date like that so it was really hard to take.  I try to give her encouragement by the positive stories I read about on this site.  So far they say the CC has matastisized to her liver. As mayo they saw spots on her abdomen but didn't feel they needed to biopsy since the main concern is the bile ducts.

Next week I'm making an appointment at Cancer Centers of America. I don't want to give up and none of should.

Thanks for your thoughts and stay tuned.

Re: I don't get it

Hi Lisa, you have a great positive attitude and that's a HUGE part of dealing with this!  PLEASE don't give the doctors too much credit with their "expire" dates.  Look at all the ones who have outlived the dire predictions and keep fighting.  Last year in May, they told us Charlie had 3 to 6 months and he's still here and still fighting over a year later.  Best wishes to you and your Mom and keep us updated.

Carol

Re: I don't get it

Also, Lisa, Charlie didn't respond well to Gemzar last year either.  The tumors didn't shrink.  He's now on IV chemo oxaliplatin and oral Xeloda.  Don't know yet until scan in a couple of weeks if it's helping or not.  Remember, everyone reacts very individually to the different chemo regimens.  What works for one may not work for another.  Stay on top of the doctors to try other drugs and combinations if you can.  Your Mom is blessed to have such a wonderful daughter.  Take care of yourself too!

Carol

Re: I don't get it

Hi Lisa,

I have also been in touch with Cancer Treatment Centers of America in Chicago.  Our current doctor in DC does not give us much hope. 

Can you let me know your impressions of Cancer Centers?

Re: I don't get it

Finding a good oncologist seems to be the hardest thing now days.  It is so unfortunate.  Our oncologist Youram Nisser, MD is wonderful.  He is familiar with CC patients and basically has a strong attitude toward fighting this disease.  He told us "as long as you are up and willing to fight, I promise I will be right there along side researching and fighting with you"  I feel so lost now that there is a recurrence but thankful that we have such a great oncologist who is in the fight with us.  He takes very good care of Chucks and said there are lots of treatments out there available.  It is just a matter of holding on and fighting long enough to find a combination that works for you and your body. He recommends high doses of Protein and whatever your body craves.  He basically said if you can withstand a tub of ice cream but can't eat anything else well then eat the whole tub of ice cream.  It is a matter of keeping the weight stable during treatment.  He said in his opinion many cancer patients don't die of the cancer, they die of starvation.   So keep up the good work and the fight.  Take in what you can and try to stay positive.

Re: I don't get it

Chrissy,
Although, I am constantly teasing Jeff about his dietary habits not falling into the "realm" of what is perceived to be a healty diet and he loves to rub it in,  he does seem to have success with keeping his weight stable.  Whole tub of ice cream ...sounds good to me.  That is of course, if Chuck can handle the high fat content.  So glad for you to have found an oncologist who is willing to fight along with you.
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: I don't get it

Lisa,
Never give up hope.The doctor himself told me to go home and put my affairs in order..he was nice about it, but still.That was Nov. 16th 2008 and he gave me four months..HEre it is nine months later.and I honestly do not give the medicine or the doctors the credit..I give God the glory because He is the one who chooses our "time" here..So you hang in there con't to seek other opinions and purpose in your heart that you are allowing God to "run" the show..He can do all things...
I thank God every day for the doctor and the chemo [Gemzar] that I am given, but it is HE who  is the true healer..I will pray for you all and know it is the fight in your mom that will keep her going.

Lissa Spears

provervbs 3: 5 & 6