February 13, 2020 at 9:11 pm #99675bglassModerator
It is great to hear from you again and especially that your mom has done so well with treatment.
The experiences reported by our patients are usually that they stick with a treatment as long as it is working, but have some Plan B’s in mind for when the day comes that a treatment stops working or the patient cannot tolerate it any more. My impression is that doctors would be reluctant to stop a treatment that is working if the patient is doing well and feeling well.
It is a good idea with cholangiocarcinoma to have genomic profiling because there are now drugs available through clinical trials that have effectiveness for patients with specific genomic defects or mutations. When you receive the results of your mom’s profiling, then you can look into what drugs for any discovered mutations are being tested locally.
Proton treatment for cholangiocarcinoma is somewhat new, and radiation is a less common treatment for us generally, so we have not heard from many patients who have had proton treatment. There have been some research studies that can be found through an internet search.
I would recommend before pursuing proton or other specialized radiation treatment at a distant location, that you seek expert opinions that it can do some good. Some of the major cancer centers in the U.S. offer remote second opinions – you just need to send records electronically. The medical centers you are considering in Germany and Japan may offer the same service. Radiation treatment is very specific to the tumor’s location relative to other organs in the gastrointestinal tract. It might be the case that any of several radiation options would be feasible in your mom’s case making it easier to find treatment close to home, or it may be that the tumor location makes any form of radiation risky. Radiation treatment can be difficult to tolerate for some patients, so it is good to know in advance what side effects might be possible.
I hope your mother continues to do well. She is very lucky to have such a devoted son looking after her.
P.S. Here is an article that Gavin previously posted which discusses the range of treatments that can be considered when cholangiocarcinoma is only present in the liver:
February 12, 2020 at 10:11 am #99667InthefightParticipant
- This reply was modified 2 weeks ago by bglass. Reason: Added a citation
Hi all lovely people,
So my 79y mom has been diagnosed with Grade III unresectable ICC 10 months ago. She is on her 11th Gemcitabine / Carboplatin cycle and going strong. All blood panels normal, no side effects except fatigue. There’s no metastasis so far on the last PET.
Tumor mass has gone from 7cm to 4.5cm in 10 months.
Since day 1 she’s been on these supplements:
– CBD 60mg (Full spectrum CBD, CBDv, CBG, CBDa)
– Magnesium Glycinate 240mg
– MyCommunity Host Defense Mushrooms (3/day)
– 400mg CoQ10 Ubiquinol
– 4000 IU Vitamin D3 + 100mcg K2
– Ashwagandha 1500mg
Her CA 19.9 was at 6 when starting chemo and is at 5 now (10 months & 11 cycles after)
1) We’ve sent her histological sample to Roche USA to have a FoundationOne CdX genetic panel performed. One of our consulting Oncologists sees there might be some material to work new drugs on… what do you think of this?
2) We are evaluating Proton or Carbon-Ion high particle SBRT/IMRT in Japan or Germany with ablative intent – Do you have any experience with this?
I personally believe that the good health state of my mother indicates a perfect timing to incorporate new therapies (immunotherapy, novel drug, high beam particle…), so we are pushing her oncologists to consider these options. I know this chemotherapy will fail or she will stop responding to it sooner or later. What do you think?
- This topic was modified 2 weeks, 2 days ago by Inthefight.
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