1

(14 replies, posted in Grief Management)

Claude,

I could nearly ditto what Amy said. My mother passed away on May 10, 2010, the day after Mother's Day, 15 months after being diagnosed with cc. We knew she was on the edge those last 6 weeks. I was with her in CO when her oncologist told her they could do no more.

I spent the last year grieving with every CT scan that came back showing more growth, with every set of bloodwork that showed elevated cancer markers, with every change in chemo drug because the prior one quit working. My sister, on the other hand, was really unable to deal with each setback and chose to keep my mom "healthy" in her own head. Not wrong, just the way she dealt with it. She is now having to deal with grief of loss and is having a much harder time of it than I am.

Now with my mom gone, I am realizing like Amy that the vast majority of my grieving was before she past. It was in the process of losing her and each setback. Those last 6 weeks we all knew the inevitable was coming down on us and her state of being was no way to live. My faith has also helped this tremendously.

Anyways, just wanted to let you know that I understand completely what you mean by greiving in advance.

April

When I was reading journals looking for answers (and to learn about cholangiocarcinoma myself) last year, I came across an article on tumors and liver masses associated with oral contraceptives and the link to hepatocellular carcinoma.

I don't think I can attach the article here - I don't see functionality to do so - but the reference is:

From the journal "Cancer" in the July 15, 1991 issue. Volume 68. Starting on page 341 and by the PI, Liang-Che Tao. The article is titled "Oral Contraceptive-Associated Liver Cell Adenoma and Hepatocellular Carcinoma: Cytomorphology and Mechanism of Malignant Transformation".

My mom used oral contraceptives for years (actually decades...). Who knows if this is what triggered her cancer, of course. Needless to say I have no intentions of ever using hormonal therapies again and will make sure my daughter is aware of the risks particularly given her grandmother's cancer.

If anyone wants a copy of the article I have it on my hard drive and can send it. Edited to add - e-mail me through my profile because I rarely pop in here now that my mom has passed. I check in for new research updates mostly. It is too difficult still to read people's stories yet since my mom passed 3 months ago.

April

3

(8 replies, posted in General Discussion)

My mom is having the same difficulties.

She was being drained twice a week. Her oncologist just added an infusion of albumin (I believe) with her paracentesis and this has dropped her needing to be drained to once a week instead of twice, which is more tolerable to her.

I don't know if they have talked about a drain yet, but I have read about that.

4

(22 replies, posted in General Discussion)

Good news on the bili!

My mom didn't go to MD Anderson, but she went to Mayo Rochester. They worked with her to time the visit with an off week with chemo and after she had a scan. I think the thought was that they wouldn't want to interrupt treatment and it would give a data point as to what is working or not.

Welcome to the site, though I am so sorry you have to be here. Can I just say that I enjoyed reading your post Harm - you have a knack for writing and communicating yourself and I don't find it off putting at all.

Best wishes to you in continuing your fight!

Why the no sugar? There are some camps out there who believe sugar feeds cancer cells. I don't know enough to comment on this, but some cancer diets include limiting or restricting sugars for this reason. This comes from (I believe) that cancer uptakes glucose and it is this mechanism that is exploited in PET scans and enables the imaging of the cancer cells. In this case, I can understand his desires not to have sugar.

April

Yay! My mom's hair has been regrowing as well, she said it was coming in much darker. Is your color/texture the same as before?

April

How exciting! I love reading these good news stories.

9

(33 replies, posted in General Discussion)

Glad to hear he started chemo. Waiting is the absolute worst!

10

(187 replies, posted in Hospitals)

My mom has been seen by - and is very happy with - Dr. Marschke in Fort Collins, CO:

http://www.frontrangecancer.com/bio_rm.php

She has also seen Dr. Alberts at the Mayo in Rochester and Dr. Eckhardt at the University of Colorado in Denver.

http://www.uchsc.edu/sm/deptmed/oncolog … khardt.htm

Glad to hear they figured something out Suzanne!! That's quite a day!

April

12

(6 replies, posted in General Discussion)

I am so sorry for your loss Kay.

April

13

(9 replies, posted in Good News / What's Working)

Yay! I love reading good news!

14

(1 replies, posted in General Discussion)

A few weeks ago Gavin posted this link on Photodynamic Therapy:
http://www.philly.com/philly/health_and … 74882.html

I called Dr. Loren's office and we got my mom's materials sent there for an evaluation. Turns out that she is not really a good candidate as her cancer isn't blocking the bile ducts.

However, I wanted to repost this and encourage people, particularly who are in the Northeast part of the US, who are having blockage problems and high bilirubin problems to contact Jefferson University Hospital to evaluate whether this may help you. Here is their contact information:

http://www.jeffersonhospital.org/gastro … 11431.html

I was impressed that Dr. Loren phoned me this afternoon to discuss why he didn't think she was a good candidate.

15

(15 replies, posted in General Discussion)

Thanks elmoks! It is amazing to me as well how many young people are here struggling with this. Good luck to you and your mom too. You guys are in my thoughts and prayers as well.

16

(13 replies, posted in General Discussion)

Mayo in Minnesota. My mom went there in October. They have a very strict protocol. My mom saw Dr. Alberts in oncology - I don't know how much cross over there is between oncology and surgery/transplant there. There is also a YouTube video out there on transplantation for cholangiocarcinoma through Mayo and I am thinking in that case, the YouTube video is out of Arizona, but I may be wrong.

YAY!! Very awesome news!

April

18

(15 replies, posted in General Discussion)

Yes! Funny you mentioned that because I was reading other posts - specifically by you and saw the milk thistle! I sent the info to my mom this morning and she said that she had looked it up also after seeing it mentioned here and there on the website and she started it a few days ago.

This website is such a great resource!

Wishing you the best for another clean scan! Reading your post is very inspirational!

20

(15 replies, posted in General Discussion)

Thanks Kris!

We are pursuing the PDT treatment in Philadelphia. I have phoned them and we are working to get her records and scans sent there to see if she is a candidate.

The doctor told her early this week that even though she was approved for the Y-90 microspheres that her liver function isn't good enough. Similarly the clinical trial she is supposed to start on in early March has said that if she can't get her liver function back in line, they will have to eliminate her from the study. It has been a rough week.

Though we are hopeful that if she can go get the Photodynamic Therapy that might help her get her liver function back in line a bit and then pursue the microspheres.

21

(13 replies, posted in General Discussion)

Mayo, as others have mentioned.

But also look at the University of Nebraska. I found them by chance, I think from reading posts here. They follow the Mayo protocol. I spoke with them on the phone regarding my mom and they were very nice.

Thank you for this link!

23

(5 replies, posted in General Discussion)

Great news! My mom was on Xeloda a few weeks ago and she tolerated it well and her CT scan showed no growth. Wishing Dave continued success!

24

(15 replies, posted in General Discussion)

I want to thank everyone for the wonderful thoughts and sentiments.

We had some positive news that has raised her spirits since Wednesday that at least the fluid is not malignant.

I will look into the photodynamic therapy and thanks to all who suggested that. We are still waiting for the results from the angiogram to determine if the microspheres are an option.

She has enrolled in a clinical trial that her oncologist is one of the PIs on and that starts the first week in March, she will be off chemo for the next two weeks as the "wash out" period for that trial.

The periods of time where she isn't treating the cancer in some way are always the worst on her. She wants to be doing something to fight it.

Hi all,

Sorry this is so long. I have posted off and on about my mom and she also registered and posted an intro awhile back. I send her a lot of the posts here because she avoids the internet - not for lack of knowledge, but because reading about the cancer is very upsetting to her. She is having a hard time staying positive right now. I just got off the phone with her and we were both in tears.

History - 56 yo with successful resection of large main tumor of the liver last February - difficult to diagnose as her tumor markers were 0. Within a few months, spots showed up on her liver. At that time they still thought it was hepatocellular carcinoma and were treating her with Nexavar. When she got the "official" diagnosis of cc from Mayo they put her on Gemzar. It worked for awhile. She went to the Mayo in October and saw Dr. Alberts who said she was on the right track with the plan her oncologist lined out. In November the spots started growing again and they put her on Gemzar and Oxaliplatin. But CT scan in January showed growth again. They switched her immediately to Xeloda. She did 2 weeks on Xeloda, CT scan looked ok - no growth, but she had ascites pretty badly. They took her off Xeloda then and drained fluid off.

Today she went in for her angiogram to see if she is a candidate for the Y-90 spheres and drained off more fluid. She didn't get a good feeling from her interventional radiologist about this as an option as she was leaving the hospital. He didn't anything at that point about it not being an option, though he said he just needed to formulate his assessment now and if the assessment is good, they will see if insurance will cover it.

I just feel so bad for her. She was  so very sad on the phone, we both ended up sobbing. She is scared the ascites is a sign of liver failure and that she is running out of time. To make matters worse her oncologist is out for it sounds like 2-3 weeks due to a family member with cancer. Tomorrow she sees a PA who will let her know if the fluid is malignant.

Path forward? She wants to go back on Xeloda because she felt better on it, her liver function was better and her cancer markers dropped (but they have been unreliable for her to this point), but no advice from her oncologist on this, she will speak to the PA tomorrow on this. Her oncologist is pushing for a clinical trial. She saw another oncologist at the University of Colorado recently who has uggested one of the two clinical trials she has. Y-90 spheres? Who knows where that stands right now.

I don't think that cyberknife is an option at this point due to number of spots.

Thanks if you stayed with me this long. Are there any suggestions? What would you do?

Thanks, April