July 31, 2019 at 9:50 pm #98923
Thank you for sharing your grandma’s good news of tumor shrinkage. Fingers crossed her treatments continue to show good results.
One suggestion from our collective experience is to be sure any surgical opinions come from surgeons very experienced with cholangiocarcinoma. The surgery needed can be technically difficult, and there is a risk a less experienced surgeon might say that surgery is not possible. I had personal experience with this, where my first surgical opinion said that my tumor was not resectable, but with a different surgeon, the opinion was thankfully a green light. Other patients and caregivers have reported similar stories.
Regards, MaryJuly 30, 2019 at 12:00 pm #98922
Another update – grandma just got results of her 3 month scan and tumor has shrunk from 2.5 cm to 1.5 cm. She is now able to start radiation and is also going to see a surgeon about possibly remove the rest of the mass which wasn’t an option until now.May 10, 2019 at 8:35 am #98541
Thank you for sharing the news that your grandmother is feeling better and doing well with her treatment. I hope she continues to do well. She is fortunate to have such a devoted and caring family.
Take care, regards, MaryMay 8, 2019 at 11:07 pm #98538
Just an update for anyone who is/was following:
My grandmother is doing good, she continued with her chemotherapy treatments and is still taking RSO. We slowly built her tolerance up and she is now taking about 1 gram per week, which is nowhere near where she needs to be but it is definitely more than I ever expected her to get to. Her doctors are beside themselves and cannot believe the progress she has made in such little time. Her oncologist told her it was fine for her to take cannabis in addition to her chemotherapy treatments, so I took her to go get her Medical MMJ card shortly thereafter. She has not been in the hospital for 3 weeks now. As I stated before, she was in and out of the hospital for the first 3 weeks that she was diagnosed. The last time she was in the hospital was to get a larger stent put in her bile duct (which meant the tumor had shrunk).
She is no longer laying in bed all day and is able to go out and about for short periods of time (2-3 hours). She goes on a walk every morning, makes herself breakfast, lunch and dinner. I cannot express how happy we all are. Of course, I cannot say for certain that it is the cannabis that is helping her, but I strongly believe that it is. I have also been making her a cannabis oil which is just two ingredients – cannabis and coconut oil. She bathes in it once a day and also massages her body with it daily. Her skin is so clear and smooth; she is even noticing some of her sun spots disappearing and has been taking photos of it.
She first noticed it on a basal-cell spot on her leg that she had planned to get removed. About a week after her bathing in the cannabis oil she looked down at her leg and could barely see the spot. She came over last Sunday and showed me a picture of what it used to look like and what it looks like now and I was amazed! It’s a very light pink color and hardly even large enough to see unless you’re really looking for it.
All I can really say is that whatever the reason may be, my grandmother is making progress and my family and I couldn’t be more thrilled. She is and always has been the backbone of our family and I would encourage anyone to give cannabis a try. There really is nothing to lose – it helps or it doesn’t. Whether it be her positive mindset; really believing that the cannabis is healing her and manifesting healing energy, or the cannabis actually working, I could care less.
Thanks for reading.March 26, 2019 at 8:16 pm #98352
Thank you for your note and welcome to our community. I am sorry that your grandmother was diagnosed with this rare cancer, and hope that our community can support your family with information and a place to bring your questions as her care proceeds.
Medical marijuana is a topic that comes up from time to time on this board, mostly as a complementary care option for patients to ease discomfort from the cancer and treatment side effects. I have met patients who find it very helpful for easing nausea, for example. To my knowledge, there are no research studies yet involving patients that show cannabis-based treatments to be effective as a cure for cholangiocarcinoma. The usual cautions about the safety of supplements or other alternative treatments whose content is not regulated or certified by an independent professional body would apply here. From what you describe, you are investigating which products are best and gathering sound information, and I imagine it helps that medical marijuana is legal and presumably regulated where you live. I hope your grandmother finds relief from her symptoms and that the chemo is effective.
You may wish to check with your grandmother’s medical providers that any alternative treatments do not impair the effectiveness of her chemotherapy.
As you are researching treatments, please take a look at the many caregiver and patient resources on the Cholangiocarcinoma Foundation website.
If it is difficult for your grandmother’s pain to be brought under control, you may consider pushing her doctors to adjust her pain meds. Many healthcare facilities have palliative care practices that work as part of the medical team to support the patient’s quality of life; this might be another resource to call upon. From what you describe, your family is providing tremendous support and loving care for your grandmother. I hope she finds relief from the pain she is feeling and that the chemo does its job.
For readers interested in this topic, I notice the National Cancer Institute has updated its patient fact sheet. Here is the link:March 26, 2019 at 1:26 pm #98351
Let me start by saying that I am in no way saying that this is going to be a “cure” and I am not trying to encourage anyone to try this. Just sharing what my grandmother and I have decided to try. We are also not making our own oil (yet) so it is not exactly the treatment suggested by Rick Simpson on the Phoenix Tears website. I am only doing what she is comfortable with and what we can get our hands on right now. Being in Arizona, we do have access to medical mmj and I have been able to acquire some products through friends who are in the industry. My grandma is going to get her mmj card this week and I will be her caregiver.
My grandmother is a retired RN, and her sister is a nurse as well. She is the one who has been taking care of her and helping administer the medications. For those that missed my introduction post, my grandma is 71 years old and was diagnosed about a month ago. She has been in and out of the hospital ever since. She is home now, and taking cannabis along with chemotherapy treatments. We are not trying cannabis as an alternative, but as an addition to her traditional treatments. She is also eating gluten free, sugar free, dairy free, all organic foods. We are fortunate enough to have a very tight-knit family who has all been very helpful and loving. My mother is making her fresh squeezed juices daily, and I make her meals for the week.
So far, I have been trying to build her tolerance as she is not a fan of the psychoactive effects of THC. Prior to diagnosis she had already been taking CBD oil to help her sleep as she has been taking Ativan most of her life. I have gotten her some high CBD RSO which does not have the psychoactive effects due to the low amount of THC present. She is taking this sublingually 3x a day – about 1 grain of rice at a time. I have also been having her take some pourable THC syrup that she is taking orally – an indica strain at night to help her sleep, and a sativa strain during the day so she isn’t quite as drowsy. This is also supposed to help with pain, but I don’t think she is getting a high enough dose to help with pain relief. Her current dosage is 2.5 mg and I have been telling her to take this every 4-6 hours which I am not 100% sure that she has. The only thing I know for sure she is taking is the high CBD RSO.
One huge issue is that grandpa is a retired Sheriff, and is not having any part of these “illegal drugs” in his house. He also doesn’t want to do any research about this so he is upset that right now she is taking this in addition to her prescribed medications, such as morphine. I tried explaining that this isn’t going to be a replacement right now until we can build her tolerance and get her the proper dose. Everyone’s body is different so I am taking it very slow with her.
Today I made her a medication log sheet so that I can monitor her dosage and pain levels better and try to adjust accordingly. She started taking the RSO regularly, last Friday – 4 days ago. When my mother and I went to see her yesterday, we couldn’t believe how good she looked. The first thing my mother said was, “wow, mom your skin looks great!” Now, I am not saying that this is because of the cannabis, but nothing else in her daily regimen has changed aside from that.
Our goal is to get her to 1 gram of the 1:1 THC:CBD RSO per day which right now seems like a long shot, but that is where people have seen the most improvements. Once she finishes the high CBD RSO, I have gotten her some 1:1 THC:CBD RSO that we will start giving her. This one will have more of a psychoactive effect than the high CBD because of the THC content, so when we start that I will be with her and we will not have her take any other cannabis products until I know that she is comfortable. If we are seeing improvements, I will then begin making our own RSO following Rick Simpson’s recipe.
I will try to answer any questions anyone may have, and also update this tread as anything comes up. Thanks for reading – positive comments are welcome. Please keep any negativity to yourself.
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