ajcarman72
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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
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.
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
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/oncology/faculty/eckhardt.htm
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.
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.
