Topic: Mom has this horrible disease

I'm new to posting on this site but have been reading updates on a regular basis to learn about the options my mom has and what others are going through. My mom was the healthiest person before getting diagnosed in Oct. 07. Never sick a day in her life.  I don't undestand why this happened but we are doing our best to accept it.  Just a little background of what she has been going through... She had her galbladder taken out in Oct. 07 and that is when they found the cancer in her bile ducts.  She had turned yellow and we were hoping it was just a large stone in her galbladder but when the doctor came out and said it was cancer I was devestated.  We were referred to an oncologist right away.  In the mean time she had to get one of those stupid biliary bags which she'll have the rest of her life.  Her Oncologist started her on Gemzar for 3 cycles.  In March we found out it did have any effect besides making her sick. Next chemo was Xeloda.  This brings us up to more recent events.  We heard so many great things about Mayo Clinic that we made an appointment to see if they could offer any other treatment options.  While at Mayo last week she could barely walk. A cat scan showed she had several blots clots which is supposedly common in cancer patients.  This put her in the hospital up at Mayo for 5 days in which they were great but still no options for treatment. The cat scan also showed the Xeloda wasn't working.  We are ready to give up on chemo drugs but don't want to sit back and do nothing either.  Just looking for suggestions or opinions.  I'm sure I will post again but I have to get back to work now ;-)

Bless you!

2 (edited by bbfranson Thu, 09 Jul 2009 19:28:37)

Re: Mom has this horrible disease

Lisa,

Our prayers are with you and your mother.

God Bless,
Brenda

Re: Mom has this horrible disease

Hi Lisa L....  Lisa how ols is your Mom and how extentsive is her cancer?  Is it in one primary location or mets to different locations.  Does she have any other illnesses that may hamper her in recieving different treatments?  I really can't suggest much without knowing a little more of her cancer.  Ther are alternative chemo treatments, radiation of different kinds, and even another opinion might be worth looking in to.  The fact she had several blood clots makes me think her cancer is pretty advanced.  I'm so sorry your Mom has to endure this awful disease but there might be some other options yet.  Although Mayo is normally reliable ,I have seen other treatment centers attempt some novel treatments.  But as youknow from reading there are no guarantees when dealing with this mean disease.  If you like tell us a little more and maybe some members will come up with some ideas for you to think about.Is your Mom having to deal with any pain yet?  Wish your Mom the best and strentgh for you during this trying time.
God Bless,
Jeff G.

Take it to the Limit,One More Time! (Eagles)

Re: Mom has this horrible disease

My mom just turned 73.  Neither her oncologist or Mayo suggested radiation because it can do more harm to her liver than good.  We even looked into a transplant but the cancer has matastisized and it is not an option.  The cat scan last week showed some spots on her abdomen but they didn't worry about doing anything there because the bileduct/liver is their main concern. My mom has had acid reflex for a few years but other than that she has been very healthy.  Mayo suggested looking into a research study so I'm trying to find something that may benefit her but we don't want to put her through more pain if it won't be effective. She has a lot of what she calls "gas" pain in her abdomen and the biliary bag causes a lot of issues.  Now she has pain in her legs as well due to the blood clots. 

Right now she prays she is able to walk my sister down the aisle at her wedding Aug. 30th.  She has this to live for which I think is keeping her going. 

Thanks for your thoughts and ideas!  Very glad there is a site like this to share information.  Take care.

Re: Mom has this horrible disease

You said she has pain in her legs due to the blood clots.  My mother was recently diagnosed in June 2008.  She was so healthy and them one weekend, she felt terrible, confused, constipation, very tired....fianlly after extensive testing  alarge malignant tumor was found on her liver but her primary was cholangiocarcinmoa cancer.  We tried Gemzar twice, she got so sick, she had to take iv's of aredia for her high calcium, has anyone else experienced high calcium with this cancer?  Now she is, besides being itchy and having stomach aches, complaining about the pain in her legs.  How would one know if she has blood clots, what do you do?

Thank you

Re: Mom has this horrible disease

My dad had pain in his legs, too.  A ct scan found that the cancer had spread and was actually eating through his right femur.  He had horrible itching spells, as well.  I would stand there and scratch his back for several minutes several times a day.  He really was miserable.  Wishing you and your mom the very best surviving this horrendous disease.

"Faith in something greater than ourselves enables us to do what we have said we'll do, to press forward when we are tired or hurt or afraid, to keep going when the challenge seems overwhelming and the course is entirely uncertain."     ~g. b. hinckley

Re: Mom has this horrible disease

The board can get confusing, Lisa posted that her mom passed away in the In Remembrance section, see:

http://www.cholangiocarcinoma.org/punbb … hp?id=1595

Re: Mom has this horrible disease

what was the leg pain from, where his legs swollen...how did you help his pain in his legs?  should i be checking for clots?  Her itching is not horrible, does it get worse?

Re: Mom has this horrible disease

For all the itchers out there: When Teddy was itching before his diagnosis it got so bad that nothing helped. We discovered Sarna Cream at Walgreens. It was the ONLY thing to give relief. Also we used to put ice bags on his arms and legs that helped for awhile. Hope you can find some relief.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

10 (edited by marions Tue, 29 Jul 2008 18:02:57)

Re: Mom has this horrible disease

Lisa....yes, most likely the itching will increase.  It is a major problem unless a stent can  be placed in order to drain the bile which presently, seems to be coming through her pores.  Are you in touch with the physician?  Also, Solarcane might give your Mom some relief in addition too, a shower will help, temporarly.  You need to find any way possible to keep your Mom comfortable.
Hugs
-M-

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: Mom has this horrible disease

Does everyone's legs get swollen below the knees?  The doctor is not recommending a diuretic, not sure why.  She has itching , not too bad but although is in stage IV, no jaundice...are there others that do not have jaundice.  I feel like she is a time bomb and it is so scary, i just don't know what to expect.

12 (edited by marions Tue, 29 Jul 2008 22:11:55)

Re: Mom has this horrible disease

Lisa....I am not a physician and can only speak of my own experience and of what I have learned, so far.  I would not worry too much about the jaundice.  And the fact that your Mom

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: Mom has this horrible disease

Lynns,

My mother also has high calcium. They originally thought it was due to a parathyroid problem but have now decided that it is due to the cancer. She also has a large tumor on her liver - not sure if that has something to do with the high calcium but we were told high calcium is an "indirect" symptom.

Best,
Dawn

Re: Mom has this horrible disease

Hi Patty, yes it can get confusing sometimes because of the different sections and individuals post in different sections for different subject matter.  If you look at the very top of posters name you'll see the date posted.  Sometimes people don't catch or see the Rememberance section before answering an old post. Sorry, it's a busy site. checking the date willl keep you on trach though.
Bless ya, Jeff

Take it to the Limit,One More Time! (Eagles)