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Dear ChezWright:
I agree with BGlass and Hercules that a second resection for a localized recurrence is a good treatment option. My mother, like you, had a recurrence after 5 years. Luckily, she was able to do surgery to remove the tumor in the liver. Before her second surgery, we also explored other options and found that surgery is still the best option for a localized recurrence. After her surgery, my mother also received immunotherapy as adjuvant therapy. So far she is NED. So please don’t take your primary doctor’s comment that surgery is not working for you.
Regards,
MaggieHi Jonas:
I am really sorry to hear about your sister. You may have heard about the wonderful stories of some patients in this forum about the drug Keytruda. It was also recently announced that it has close to 40% response rate in cholangiocarcinoma patients based on the most recent clinical trial data. I am not sure if your sister can get into a clinical trial with Keytruda right now but I also read an article about Brown Cancer Center can treat with Keytruda for free. You may want to look into this.
Best wishes to you all,
MaggieDear Julie:
My mother is using Keytruda in an adjuvant setting in Hong Kong after she had surgery for a recurrence 5 years post initial diagnosis. After diagnosis of her recurrence in Dec 2015, we were also given the option of first doing chemo to shrink the tumors before surgery. After doing some research in the literature, I realize it may not be a good option, fearing that chemo may not work to shrink tumors and we may miss an opportunity to surgically remove the tumor. After the surgery, my mom is given the option to do adjuvant therapy, using either Xeloda with and without radiation, or Gem/Cis. My mom is in her seventies and may not tolerate these treatment well. So we searched all over town to get second opinions on adjuvant therapy. Finally, we found one oncologist in Queen Mary Hospital in Hong Kong and consulted him in private setting. We were happy to hear that Keytruda can be given in an adjuvant setting but of course there is no data yet showing whether it would be useful. But considering the lower toxicity of Keytruda and the fact that chemo also only has a response rate of 20-30% in CC, we opted for Keytruda, but have to pay for the drug from our own pocket. My mom so far had 5 injections of Keytruda and did have some side effects. After the 3rd injection, she started having mouth sores and after the 5th injection, she had symptoms of hypothyroid (constipation, fatigue, feeling cold, blurred vision, mood changes etc) although her TSH levels are normal. Also, her serum creatinine levels seem to be elevated after the 4th and 5th injection. It is also not known how many injections she should do as there is no indicators of cancer in her case after surgery. So it is possible to use Keytruda for adjuvant therapy but data is lacking at this stage. I am also hoping that my mom is MSI but we did not test for it. She does have NF1 mutation which may be an indicator of MSI so I believe Keytruda would be useful for her.
Wish you all the best in your decision making,
Maggie
Dear all
A free copy of the paper is available at this:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3846443/
Maggie
Hi Wendy,
I am glad to hear that Dr. Liu can look after your dad. My mom did not have an oncologist and she went directly to Dr. Liu. After her surgery, we were wondering whether she needed chemotherapy and so we consulted other oncologists afterwards. After consulting a few doctors with the majority thinking that she is better off not doing chemotherapy/radiation as adjuvant therapy, we just left it as that. You can look at my previous posts on this issue.
All the best to you and your dad.Maggie
Hi Wendy,
I have not heard of Dr. Thomas Yau. HK Sanatorium & Hospital is where my mom did her surgery. It is the best private hospital in HK. Dr. Liu may not be very good at returning emails as I had this experience before. You may have to be proactive in contacting him.
Best regards,
MaggieHi Wendy,
My mom had hilar CC and she had 70% of her liver removed along with the gall bladder. Dr. Liu was in the liver group at HKU before he became a private doctor (His email address is: clliu@hkhbpc.com). As I said he is really busy and we had to be proactive in getting an appointment. You could try to email him or call his clinic (the number that I gave you) to see what you can do. PSK from Japan is somewhat tricky to get because first we need to buy it from their Taiwanese distributor for the reason that the Japanese company requires a doctor’s prescription to sell it in Japan. So we got our friend in Taiwan to get it for us. Secondly, it so happened that the factory which makes PSK in Japan was in the same province as the Fukushima nuclear reactor. So the earthquake in March this year affected their production and we are not sure whether future production of PSK will be affected by contamination. Anyway, one could still buy the old stock from the Taiwan distributor (provided that the old stock is still available). If you need info on the Taiwanese distributor, I can provide that, but you need someone to pay them in Taipei and they do not ship to overseas address.
Maggie
Hi PCL1029
The PSK from Japan costs about $500 US per month. It is made by Kureha Pharmaceuticals which owns the patent of PSK. It is being used by cancer patients in Japan and requires a doctor’s prescription.
Maggie
Hi Wendy,
I am sorry to hear about your father having CC. My mother who lives in HK was diagnosed with CC last year. She had her surgery last year and is doing fine so far. You could consult her surgeon Dr. Chi-Leung Liu (Tel: 852-29872222) He is really busy and is one of the most experienced surgeon for CC in HK. My mom is also taking PSK (from Japan) and maitake mushroom extract (from US). Hope this helps.
Regards,
MaggieHi Max,
I speak Cantonese and my mother was diagnosed with CC last year. How is your friend doing now?
Maggie
Dear Laura,
Here are the links for coriolus versicolor and maitake mushroom. This is where I started my research. As mentioned in these websites, there are many brands and not all of them are standardized. In general, I think Japanese source is more reliable.
http://www.mskcc.org/mskcc/html/69194.cfm
http://www.mskcc.org/mskcc/html/69294.cfm
As for Immunocal, here are two published papers related to cancer:
Anticancer Res. 1995 Nov-Dec;15(6B):2643-9.
The use of a whey protein concentrate in the treatment of patients with metastatic carcinoma: a phase I-II clinical study.
Kennedy RS, Konok GP, Bounous G, Baruchel S, Lee TD.Department of Surgery, Dalhousie University, Halifax, Nova Scotia, Canada.
Abstract
Glutathione (GSH) concentration is high in most tumour cells and this may be an important factor in resistance to chemotherapy. Previous in-vitro and animal experiments have shown a differential response of tumour versus normal cells to various cysteine delivery systems. More specifically, an in-vitro assay showed that at concentrations that induce GSH synthesis in normal human cells, a specially prepared whey protein concentrate, Immunocal, caused GSH depletion and inhibition of proliferation in human breast cancer cells. On the basis of this information five patients with metastatic carcinoma of the breast, one of the pancreas and one of the liver were fed 30 grams of this whey protein concentrate daily for six months. In six patients the blood lymphocyte GSH levels were substantially above normal at the outset, reflecting high tumour GSH levels. Two patients (#1, #3) exhibited signs of tumour regression, normalization of haemoglobin and peripheral lymphocyte counts and a sustained drop of lymphocyte GSH levels towards normal. Two patients (#2, #7) showed stabilisation of the tumour, increased haemoglobin levels. In three patients (#4, #5, #6,) the disease progressed with a trend toward higher lymphocyte GSH levels. These results indicate that whey protein concentrate might deplete tumour cells of GSH and render them more vulnerable to chemotherapy.Anticancer Res. 2000 Nov-Dec;20(6C):4785-92.
Whey protein concentrate (WPC) and glutathione modulation in cancer treatment.
Bounous G.Research & Development Department, Immunotec Research Ltd., 292 Adrien-Patenaude, Vaudreuil-Dorion, Quebec, Canada, J7V 5V5.
Abstract
The glutathione (GSH) antioxidant system is foremost among the cellular protective mechanisms. Depletion of this small molecule is a common consequence of increased formation of reactive oxygen species during increased cellular activities. This phenomenon can occur in the lymphocytes during the development of the immune response and in the muscular cells during strenuous exercise. It is not surprising that so much research has been done, and is still being done on this small tripeptide molecule. Whey protein concentrate has been shown to represent an effective and safe cysteine donor for GSH replenishment during GSH depletion in immune deficiency states. Cysteine is the crucial limiting amino acid for intracellular GSH synthesis. Animal experiments showed that the concentrates of whey proteins also exhibit anti-carcinogenesis and anticancer activity. They do this via their effect on increasing GSH concentration in relevant tissues, and may have anti-tumor effect on low volume of tumor via stimulation of immunity through the GSH pathway. It is considered that oxygen radical generation is frequently a critical step in carcinogenesis, hence the effect of GSH on free radicals as well as carcinogen detoxification, could be important in inhibiting carcinogenesis induced by a number of different mechanisms. Case reports are presented which strongly suggest an anti-tumor effect of a whey protein dietary supplement in some urogenital cancers. This non toxic dietary intervention, which is not based on the principles of current cancer chemotherapy, will hopefully attract the attention of laboratory and clinical oncologists.Maggie
Dear Laura,
I am sorry to hear about your mom. My mom was diagnosed with CC in June this year and was treated by surgery. Although she is fine right now, I am constantly trying to find alternative therapy or supplements to prevent cancer recurrence. Through my research, I have come down to a few things that I believe would be useful. My mom is on them and so are some of the people on this website. They are coriolus versicolor (PSP or PSK), maitake mushroom and immunocal. From what I have read in the literature, these are promising supplements which can boost the immune system and prepare the body to fight against cancer cells. They can also reduce the sides effects from chemotherapy/radiation so that the patient can better tolerate these therapies to allow them to do their job. Immunocal is Canadian made and can be ordered from Quebec. Maitake mushroom is being tested in humans in Sloan Kettering. PSK is an approved cancer adjuvant therapy in Japan. I recently came across a paper describing a long term CC surviver in Japan. She was initially diagnosed with stage IV CC. She had received surgery, chemotherapy with various drugs and PSK. As explained in the paper, it was difficult to conclusively say which treatment cured her. Anyway, it was an encouraging paper to read. Here is the link:
http://www.springerlink.com/content/n509gcxd6053wdcn/fulltext.pdf
Best wishes to you and your mother,
MaggieMy mother is taking Maitake Gold 404 liquid extract from Mushroomscience. They recommend a dose of 1mg/kg/day. She weighs about 50 kg so she is taking 50 mg in two divided doses (morning and evening). She also takes coriolus versicolor capsules (3 capsules 3 times a day). With only surgery treatment (2.5 months ago), she seems to be recovering well so far.
Best wishes to you and your son.
Maggie
My mother (68 yrs) had her surgery in July this year and I was with her most of the time in the hospital. My sister and I took turns to be with her. She did not have pnemonia but for the first 3 days after surgery, I feel that it was the most critical for her, when I now look back. She almost had cardiac complication on the second day. She was very closely monitored during the first few days, ie. temperature and blood pressure measurement every 1-2 hours by the nurses, measuring urine output to make sure her kidney is functioning properly. Because my mom is also a diabetic, so she was also on insulin and glucose by iv for a while. So her blood sugar was also closely monitored. However, the nurses were very busy, so my sister and I had to keep a close eye on her. In fact, my mother had very little rest , because of all the things that need to be done to make sure she is not developing any complications. My mom did indicate that she needed someone with her 24 hours also because she was very afraid.
Maggie
