1

(3 replies, posted in Chemotherapy)

Hi -

That was my dosage from March to September (1500 mg 2x daily/14 days on/7 days off).  I am 5'9" 150 lbs and 33 years old. My only symptoms were fatigue, some slight numbness in my feet, and stomach discomfort (which was managed with OTC Nexium and Rolaids). In September, the stomach discomfort got worse, and I was told to take a break from Xeloda.

Good luck.

2

(7 replies, posted in Introductions!)

Hi Vicki -

Welcome to the site, and you will find tons of helpful information here.  And best of luck at MD Anderson in September!!

Regarding the pain in the rib cage you mentioned, I have been dealing with a similar pain on and off since diagnosis.  I would recommend you mention this to your treating physicians because it potentially could be metastasis to the bone (worst case).  Most likely it won't be, but an MRI or PET scan would rule it out.  In my case, my treating physicians ruled metastasis to the bone with an MRI, and then told me it was most likely inflammation pushing up against the rib cage.  I use ice packs on my rib cage and/or take ibuprofen to help with the inflammation.  However, I'm sure your doctors will have better advice than what I can provide!

Hope you find some relief.
Connie

3

(9 replies, posted in Introductions!)

Hi Marion -

At diagnosis in December 2013, I was told it was unresectable due to lymph node involvement.  We sought opinions from two other facilities, and those surgeons concurred. As you recalled, I started Gem/Cis for 3 mos with poor results.

In April I had radiation to the tumor outside the liver.  The tumor showed shrinkage afterwards.  They also started me on Xeloda (3,000 mg a day), which I have been on ever since.

In May, I was referred to an interventional radiologist and had three chemo embolizations to the liver (each one month apart), and I have one more to go in September. My response to the embolizations has been very good with significant tumor death in the liver.  However, my latest PET scan still shows "active" lymph nodes outside the liver. 

So, the next step will be more systemic chemo  to keep the lymph nodes in check.  My oncologist isn't sure which drug though -- he says there no clear cut option.  This is very frustrating.

I am now told if I can keep the cancer growth stable, there is a small chance they may consider a surgery in the future (they have yet to put a metal stent in, which I think is a good sign).  I am so very hopeful. 

I don't know how others handle years of treatment!  I am tired!

4

(9 replies, posted in Introductions!)

Hi -  I wonder if I ignored potential early signs - although not shingles, per se.

About a year and a half prior to diagnosis, I started experience intense itching all over that lasted about 4 weeks and drove me nuts.  At first I actually thought it was about a bed bug infestation, until a pest control guy confirmed I was completely wrong, especially since my husband had no symptoms. smile Coincidentally, we moved out of state around the time the itching went away - so I chalked it up to some type of regional allergy.

About a year later, the itching returned but both my dermatologist and ob/gyn told me it was probably post-partum hormone related as I had given birth about six weeks prior.

Four months later, the itching returned but with jaundice. At that time, I was diagnosed at stage IV and unresectable. 

I have a lot of would've/could've/should've regrets, but that doesn't help much these days.  My husband is a physician and he didn't put the clues together either.

Judy - Thanks so much for the info! We aren't seeing Dr. Kemeny, but heard similar resistance to being out of state with the pump.  Your insight is really invaluable to me while weighing my options!

Judy -

I'm sorry, but I've never heard of Ground Glass Opacity.  However, I was curious if your husband was cleared to fly and what the outcome of his scans were.

Coincidentally, I was at MSK yesterday for a consultation/second opinion.  They mentioned the hepatic pump as an option in my case (32 yr old w unresectable with mets to liver and possible lymph nodes), but said they didn't think it was a great option for me since I live out of state and they don't have anyone to maintain it near me.  They otherwise did not have very optimistic options for me besides continuing different chemo (I did not respond to Gem/Cis).

I'd love to hear about your experiences with the pump and if it is working (read some of your older posts) and with traveling to MSK for care of the pump.

I hope all is well and that your husband finds some relief soon.

7

(10 replies, posted in Hospitals)

Hello-

I've been doing similar research looking for where to go for second opinions, and I found out Dr Fong from Memorial Sloan Kettering is moving to LA to City of Hope.  I've never met him but have heard he is a wonderful surgeon that has seen a lot of cholangiocarcinoma.  I imagine that he would have an opinion that would be useful even in unresectable cases.

http://www.cityofhope.org/article/yuman … of-surgery