Eli
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Hi Tflory,
No experience with DCA. In fact, I never heard about it before. I started reading about it and I couldn’t stop. Just spent 3 hours on it.
Nature magazine article on the current state of DCA:
Cancer patients opt for unapproved drug
http://www.nature.com/nature/journal/v446/n7135/full/446474a.htmlOne case report about miracle cure in one patient:
Non-Hodgkin’s Lymphoma Reversal with Dichloroacetate
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2945664Keep in mind, one case report doesn’t prove DCA safety/effectiveness.
Clinical trials involving DCA
http://clinicaltrials.gov/ct2/results?term=dichloroacetate+cancerOne trial is completed but no results posted.
Found many articles on PubMed. At the first glance, most of them studied DCA in a dish. Need more time to sift through them.
Re CA19-9: I noticed that US patients discuss it a lot. I asked our oncologist if he is going to use it. He said no. Too many false negatives/positives. He actually said that government insurance might not cover the cost of the test for surveillance purposes.
PCL, thank you for your response. Very thorough, as usual.
I asked just to figure out how much effort I should put into researching this subject. If the tissue is not viable, I don’t have to study the use of biomarkers.
Sounds like the test might be viable. I will ask our oncologist what he thinks.
Hi PCL,
I re-read your response about ERCC1 results. Thank you for your explanation.
I have unrelated question:
My wife’s surgery was 5 months ago. Is her resected block still viable to do the biomarkers test? Or is too late now?
I assume that her specimen was stored somewhere and not destroyed. If it was stored, I have no idea what method was used to preserve it. Need to confirm this.
Best wishes,
EliTflory: Thank you! Very helpful post. Papaya enzymes sounds like something we may try right away.
Byron: Thank you for your warm welcome. I think I can relate to what you said about not wanting to start chemo again. I just heard exact same thing from my dear wife. 6 weeks after chemoradiation, her energy level is finally back where it used to be before treatment. Good luck with your next round!
Modified T-cells were used in one Japanese trial to treat intrahepatic cholangiocarcinoma.
Clinical utilization of postoperative dendritic cell vaccine plus activated T-cell transfer in patients with intrahepatic cholangiocarcinoma
http://www.ncbi.nlm.nih.gov/pubmed/21874278ADDED:
An earlier case report by the same group of Japanese doctors.
Intrahepatic cholangiocarcinoma with lymph node metastasis successfully treated by immunotherapy with CD3-activated T cells and dendritic cells after surgery: report of a case.
http://www.ncbi.nlm.nih.gov/pubmed/16715430PCL, thank you for your detailed reply. I will study it tomorrow on a clear head.
Since you mentioned it… medical studies ARE hard to read. I had to learn a whole new language. (Pancreaticoduodenectomy with Lymphadenectomy?? Really??) My background helps a little bit. I’m a software engineer by day. I do research on the Internet all the time.
I must also say this… I’m very impressed by the volume and quality of your research that you post on this site. It’s amazing you can pull it off while fighting this horrible disease. Kudos to you!!
I will be back with more questions.
mother,
I am very sorry to hear about your loss. I trust that 3 kids keep you extra-busy. Hopefully busy enough to soften your grief a little bit.
To be frank, I’m not surprised to hear about poor quality of care your mom received. My wife’s care has been good, but I wouldn’t call it great. With this horrible disease, anything short of the best possible care is not good enough. When I look back at our journey, I see many missed opportunities, or outright horror episodes. I’m trying to put these experiences behind me but it’s easier said than done.
I apologize profusely but I really need to vent about this:
We went to ER on April 18th. The surgery was done on July 4th. That’s 11 weeks delay. What happened in those 11 weeks? Not much, really. It was mostly dead wait time for appointments. We knew we were sitting on a ticking bomb, yet the system failed to show any sense of urgency. We waited 3 weeks for the endoscopic ultrasound (the final test that confirmed the diagnosis). We waited 4 weeks for the surgery after we signed the consent. My wife ended up with positive nodes and positive margins. I can’t prove that wait times contributed to the poor outcome. On the flip side, no one can disprove it either. Our surgeon admitted that wait times were inexcusable from medical point of view.
I apologize again for venting.
And yes, as you said, I try to do my best to stay on top of the doctors. They know me as the crazy husband who brings a briefcase of medical studies to each appointment. I learned to recite a disclaimer: “Doctor, I’m not trying to do your job. I just want to make sure that we consider all possible options”. Most of them take it the right way.
Eli
Hi PCL,
I don’t have any medical or bio training. Just trying to understand your last post.
You said:
Quote:Usually when ERCC1 is overexpressed, the platin group is not recommended.Question: Is “overexpressed ERCC1” the same thing as “positive ERCC1”?
If yes, the study you posted doesn’t seem to support your statement above.
They wrote:
Quote:Conclusions: Patients with ERCC1-positive ABTA show a response benefit from oxaliplatin-containing chemotherapy. On the other hand, patients with ERCC1-negative ABTA show a survival benefit from cisplatin-containing chemotherapy.If their conclusion is correct, you can’t reject the platinum group based on ERCC1 test.
Here’s how I read your test results:
If you believe IHT method, cisplatin seems to be better.
If you believe microarrayillumina method, oxaliplatin seems to be better.
Could it be they recommended both cisplatin and oxaliplatin because they don’t know which test method is more accurate?
Again, I have zero medical/bio training, so I maybe way off the mark here.
Susie, my wife is also trying acupuncture. She had two sessions so far. She was told by her practitioner that to help with nausea, needles have to go into arms. My DW opted out of it. (Something to do with one zillion blood draws she had this year). Instead, she tried needles in the back of the neck. Supposed to help with sleep and relaxation. She is very happy with the results. When I asked how it helped her, she replied that “it just makes me feel good”. Can’t argue with that.
Hi lostsoul,
Talk to your oncologist about diarrhea. They treat it all the time. Imodium is usually their first choice for mild cases. If Imodium doesn’t work, they have other drugs at their disposal.
BRAT diet is another thing they may recommend:
– Bananas
– Rice
– Applesauce
– Toast
– Plain pastaYou said you are allergic to wheat. Can you eat gluten-free toast/pasta?
Best wishes!!
Eli
EDIT:
I went back and re-read your introductory post. You mentioned that you couldn’t afford a dietician.
As a cancer patient, you should be able to see a dietician at Prince Margaret. Ask your oncologist for referral. My wife is being treated at The Ottawa Hospital. She sees a dietician on a regular basis. It’s all covered by OHIP.
Marion, thanks for mentioning steroids. I never heard about steroids given concurrently with gem/cis. Our oncologist never mentioned them. I will do my homework before we see him again.
Thank you for the tip about pea/rice protein. We will give them a try. Hopefully they cause less bloating.
Re enzymes: yes, my wife took them before/after Whipple when she had trouble digesting fats. She doesn’t feel she needs them now.
Thank you again for your helpful reply,
EliMarion and Gavin, thank you very much for your nutrition advice.
We’ve been talking about nutrition on a daily basis ever since my wife got ill. We researched all the right web sites. We studied books on nutrition for cancer patients. We see a dietician at the cancer clinic.
Yes, we tried Ensure, Boost and Glucerna. She absolutely hated the artificial taste. I tried suggesting she should think of them as medicine rather than food, i.e. not expect much in terms of taste. My “clever” trick didn’t work.
We tried mixing our own protein shakes. That didn’t go down well either. DW complained about excessive bloating.
We tried mixing protein powder in soups, yogurts, cereal, etc. She was able to tolerate it before chemoradiation but not afterwards.
We tried taking CREON to aid with fat digestion. That seemed to have contributed to nausea and diarrhea. We had to stop it.
At this point, I have to back off and let her do what she thinks is best for her body. She eats a varied, healthy diet. Lots and lots of small portions throughout the day. She gets enough calories to sustain her weight, but not enough to start gaining.
I’m scared of what’s going to happen when she starts GEM/CIS. If she continues to lose weight, she may end up in TPN territory. I don’t know what else I can do.
Dear Susie,
Congratulations on finishing the radiation. My wife finished radiation a month ago. What a difference this month has made. She was miserable at the end of her treatment. She is feeling WAY better now. I hope your recovery follows the same path.
wallsm1 wrote:I was on sooo many anti emetics, zofran, phenergan, ativan, dexamethasone and none of them helped me and made me so constipated I was pretty miserable.This brought up a memory and made me chuckle… in a good way. My wife had terrible diarrhea the last 10 days of radiation and a week afterwards. On her worst day, she made 30+ trips to the bathroom (she kept a log so we could inform the oncologist). She was also taking zofran to control nausea. I vividly remember how she moaned one day: why is my body so different? why don’t I get constipated from zofran like all other patients do?
“Funny” how people’s bodies can work so differently.
BTW, my wife’s weight is hovering around 102-105 pounds. You two should start a club. (just kidding)
Best wishes!!
— Eli
Hi PCL,
PCL1029 wrote:Also,if you are belonging to the KRAS wild type genotype,your chance of your tumors response will be much better than otherwise.What you wrote has been proven to be true in colon cancer. I’m not sure it has been proven to be true in CC.
See this article:
Time to Move to Targeted Drugs in Biliary Tract
Cancer?
http://content.karger.com/produktedb/produkte.asp?DOI=000271544&typ=pdfOn page 1 they say:
Quote:It is now well demonstrated that efficacy of EGFR antibodies is related to tumoral K-RAS wild-type status and not to EGFR expression in colon cancer [13]. Therefore, EGFR antibodies should be restricted to a sub-population of patients. This may not be the case in other types of tumor, and relationships between EGFR antibodies activity and K-RAS mutational status have to be further explored.(bold font mine)
On page 2 they say:
Quote:Interestingly, neither progression-free
survival nor overall survival were affected by K-RAS status in the GEMOX + cetuximab phase II study [11].Reference 11 points to the Austrian CC trial with 63% response rate.
— Eli
