Eli
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LeeAnn, those chemo recliners are not comfortable at all. We learned to insist on having a bed. Most chemo nurses were happy to accommodate our request. It takes just a few minutes to wheel away a recliner and wheel in a bed.
Notdoneyet,
As far as I know, metastasis to liver would be a much bigger concern for any surgeon than lymph node involvement. Metastatic disease is a strong contraindication to surgery.
I heard that Dr. Tomoaki Kato at NY Presbyterian is one of the most aggressive surgeons out there. He is known to go where other surgeons refuse to go. I would recommend getting a second opinion from him, if possible.
I agree with Kris. I would assume it’s from the chemo. My wife was cold all the time when she did chemo. Now that she has been off chemo for a few months, she is no longer cold.
Notdoneyet,
Regarding lymph node involvement, I think it depends how close they are to the tumor.
As far as I know, regional (local) lymph nodes do not preclude surgery.
Distant lymph nodes is a different matter. Involvement of distant lymph nodes is considered to be metastatic disease. Metastatic disease typically means that you cannot have surgery.
I don’t know where the boundary lies between local and distant nodes.
Please keep in mind, I’m not a doctor. I’m a caregiver just like you.
Best of luck to your son.
Hugs,
EliHi Patty,
Take a look here:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=5646
I posted an update on Kanzius clinical trials in response to a question from Tvvenky.
This article, published in April 2011, gives an estimate as to when human trials may begin:
Quote:“We’ve proved we can deliver the nano-particles to the cancer cells and we also showed that this treatment has no major side effects,” Dr. Curley said.Now the next big hurdle is getting the Food and Drug Administration to give Dr. Curley the green light to begin clinical trials on humans.
Curley says he hopes that will happen within the next three years.
“We hope by the fall we’ll actually be able to start some modeling on large animals,” he said.
If all goes well, the FDA could approve the Kanzius Treatment within the next seven years – specifically targeting patients with pancreatic and liver cancer.
The most recent news release by Kanzius Cancer Research Foundation says this:
Quote:We are finally at the point of conducting tests on large, nonhuman laboratory subjects, the final stage before presenting to the FDA for human trials.Translation: they are doing tests on large animals. They haven’t done any human trials yet.
Here’s the link to the news release:
http://www.kanziuscancerresearch.org/news-and-updates/kanzius-in-the-news/making-waves-
I keep an eye on the DCA discussion forum over at thedcasite.com. One of the members there is a medical oncologist, Dr. Stephen B. Strum.
I thought I’d share a message that Dr. Strum posted a few days ago. Please note, this is not a recommendation to use DCA. I’m just sharing what I learned.
Quote:Dr. Strum wrote:I am an MD, oncologist, in cancer medicine since 1963. I have used DCA and we have just submitted a manuscript involving a man with NHL (non-Hodgkin’s lymphoma) who had failed chemo and then went into a complete remission using ONLY DCA. His remission continues now at 4 years and 8 months.
We are starting an active research protocol in the Bahamas (Nassau) shortly. For those of you who have advanced cancer and are in dire straits, and who have access to DCA of biological grade, the dose we have used (but do not know for sure the optimal dose) is 10 mg/kg. This is dissolved in cold water and given as two 5 mg/kg doses about 12 hours apart. Usually we rest the patient on Saturdays and Sundays but perhaps in the first two weeks consider every day.
Adjuncts to be used with DCA are really needing clarification. We just do not know what is best to use with DCA. The gentlemen above used the following:
DCA mixed with 1 can of Mountain Dew (contains 55mg caffeine).
Vitamin B1 @ 500mg/day (Country Life brand).
Alpha lipoic acid 600mg twice daily (Doctor’s Best brand).
Also took Jarrow Green Tea 500mg capsule twice daily containing 74mg of EGCG per 500mg.Caffeine in Jarrow Green Tea 500mg capsule = 35mg; therefore 70mg of caffeine + 55mg in Mountain Dew = 125mg per day caffeine.
Ideally, you need to find a healthcare practitioner who will follow the patient.
In those patients with BC (breast cancer) or CRC (colorectal cancer) it appears from the peer-reviewed literature involving human tumor cell lines (not studied in patients yet) that DCA shows synergy with 5-FU (used in both CRC and BC) and also that taxanes such as Taxol and Taxotere may have synergy with DCA.
I hope this helps.
Stephen B. Strum, MD, FACP
Maria, I think you made the right choice to take a break from GemCis. I know it’s very toxic. It took just a couple of cycles for my wife to become very depressed. She cried after each treatment. She just could not help it. I think GemCis played nasty tricks with her mind. She took an extra week break between 5th and 6th cycles, at the urging of her oncologist. The short break made a big difference to how she felt.
Maria, don’t feel bad about taking a break. Take time off to heal your mind and body. As you know, chemo keeps working for a while after you stop it.
Best of luck with your MRI results on Monday. Please let us know what options the doctors present to you.
Hi Joanna,
Like others, I want to welcome you to the site. Sorry that you had to find us. I think you have a great attitude and that’s a big part of the battle.
My wife is about your age – she is the one with CC. She fell sick in April 2011, just a few days after turning 44. She is 45 now. Our daughter is 13.
My wife had her big surgery (Whipple) in July 2011. She did 2 months of chemo-radiation after surgery, followed by 4 months of chemo. From my caregiver’s point of view, the recovery from the surgery wasn’t the hardest part of the journey. Radiation and chemo were more challenging in many respects. My wife seems to be in agreement – I asked!
As Marion said, we do have members who remain in remission for years after a resection. Bob seems to be our champion. He was 15 years cancer free as of December 2011. Here’s the link to his 15 years anniversary post:
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=7423
Joanna, I wish you best of luck with the surgery and a speedy recovery.
– Eli
I saw this article yesterday and found it quite upsetting to read. Not the facts of dad’s disease. Rather, the son’s train of thought.
The son admits at the outset that he had not been there by dad’s side for most of dad’s journey. Dad insisted that son should stay in college. The son also admits that he didn’t take time and effort to educate himself about CC while dad was alive. Now that dad has passed, the son has the gall to question dad’s choices and motivation. I found this questioning rather arrogant.
The son wrote that dad’s short survival is “an average result”. The son seems to be surprised that dad failed to achieve a better outcome, despite his superior medical knowledge and connections. In my opinion, the son doesn’t truly understand how devastating CC is.
The son suggests that dad’s medical knowledge robbed him of Hope. Yet the facts in the article don’t support this assertion. Dad grew the samples of his own tumor in lab rats, looking for the best possible treatment. Dad had a very hard time with chemo, but he continued to do it until 3 weeks before passing. That doesn’t strike me as a person who lacked Hope.
Overall, this article is supposed to be a deep, thought-provoking piece that explores the relationship between Knowledge and Hope. In my opinion, the son failed rather miserably. The fact that he wasn’t there day to day shows in what he wrote.
My opinion only and feel free to disagree.
Gavin, thanks for sharing.
You previously posted a couple of printed stories about this development in Japan. Here’s the link if anyone is interested to read more.
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=8558
