Chemo-resistant cancer mutation
Hi folks, thanks for all the helpful info and support on this forum. I've been browsing occasionally since diagnosed with Stage IV endometrial cancer last year but this is my first time posting. I've been fortunate to have nothing observable since surgery, although it makes it weird fighting this invisible disease.
Anyhow, recently I've been looking at my tumor profiling report which lists the genetic mutations, one of which is ARID1A. Based on all everything I've read about it so far, cancers which have a loss of ARID1A function are generally resistant to the standard carbo-taxol treatment. This is one example which tries to explain it: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7199758/
It makes me feel a bit like screaming. Chemo isn't something that anyone would just do for fun--the pain, the lost time, the lingering side effects. It seems crazy that this is still the standard of care for cases where it's been shown to have minimal effect. I kind of understand how these things work but I just needed to express this somewhere. Thanks for listening.
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I think one of the things we learn is that treatment is not a definite. Tumor boards are helpful because many doctors look at your case and give their opinion. I think they will always err on the side of caution. It is common for tumors to be more than one type. They find two types of cells quite often and they treat for the most serious grade, even if it is just a small portion. You can find recommended treatment lists on this site. I'm glad to hear you have not had any more observable tumors. The genetic testing is relatively new too, and I think it will take more than one study to change the treatment protocol. One study I read on my type of tumor actually said there is a 1.5% survival rate. Most other studies say 90%. It takes a lot of respected studies to change treatment.
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PIK3R1,
I am nearly a nine year survivor of metastatic endometrial cancer (metastases to the spleen, liver, vaginal cuff)and have been in remission for nearly eight years. My cancer was considered incurable yet I am cured. I haven't been posting for quite some time but you can look up my history on this site.
It is important for cancer patients to realize that they can target their mutations with non-cancer drugs and supplements, as there are very few cancer drugs that target the key mutations and processes found in cancer. It is not the mutation you are targeting, it is the process the gene controls. I had a mutation on the PIK/Akt/Mtor pathway (the "PIK3R1 mutation, which is your name). This mutation activates the pathway and if it is activated you are resistant to Taxol/Carboplatin. This pathway controls our metabolism. I began the non-cancer drug metformin (which inactivates this pathway). In one month ninety percent of my metastases vanished. The remaining 2cm were gone two months later. I have been cancer free ever since, since August 2015.
Your ARID1A mutation is tied to telomere function, which are the caps on the ends of chromosomes. As we age, these degrade, and can cause aging. Metformin is known to help stabilize telomeres. I would suggest you talk to your doctor about trying metformin. If you also have a PIK3R1 mutation, metformin would target that pathway as well (Pick pathway). Metformin is well known in benefitting people with many cancers. There are over 7000 articles on metformin and cancer at pubmed.gov. The article below has a chart which shows just some of the many things metformin targets. Telomere integrity is one of them.
Takingcontrol58
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Taking control58,
It's great to hear from you! Your posts and bio really got me going in addressing my cancer. My oncologist and I both agree that metformin may well play a role in keeping my disease "indolent" and under control. I am an 18-year survivor, 6 years post-chemo and 2.5 years post-surgery for a lung nodule, and status "no evidence of disease." Thank you for your educational efforts over the years.
Best wishes, Oldbeauty
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Thank you for your responses, everyone. I just got the copy of my FoundationOne report during my last checkin with the oncologist when asking about being prepared to find a clinical trial in the future. And yes, I was surprised to see the carbo-taxol resistance mentioned briefly in one of the information sections. The tumor review board only discussed my case before the results were in, though. I'm trying to gather some info on many of the treatment possibilities so I'm prepared to discuss in my next checkin.
I had seen Metformin mentioned before on this board earlier, but when I asked my chemo nurse about it she just said "Oh no, that's something used for other people." I'll include that in my list to check into further. It's so much better looking up stuff when I don't have chemo brain anymore. 😀
Also great to hear from folks who've had metastatic disease and are still going strong! Thank you all for being here.
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Hi takingcontrol - I’ve just been reading through old threads while I couldn’t sleep and came across this post which led me to read your story. I was feeling especially sad and a bit hopeless then God sent me to your story and I feel so much better this morning💜 I am just starting my stage 4b endometrial journey with chemo/immuno expected to start in the next 1-2 weeks. I’m still just trying to grasp the basics and have so much to learn. I’m blessed to be married to a Dietitian who is doing everything under the sun to optimize me prior to and during treatment. I’m curious about Metformin - where will I find the information to determine if it could be beneficial for me? Will the Caris testing provide that info? I also wanted to ask about tumor boards - how do you get your info in front of these docs? Thank you in advance for your help and I hope to hear you are still winning your fight!
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I have been trying to remember Takingcontrols name. It's great you found her. She is the one who has supplements knowledge.
I take Metformin. I have seen studies that showed recurrence rate less in those taking it. I have type 2 diabetes. My lab work is good so my GP offered to take me off Metformin. I told her about the study and that I would prefer to remain on it. She looked up the study and agreed it would be a good idea to keep taking it. It is something to talk to your doctor about. It does lower blood sugar which cancer cells love.
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Jill,
I'm sorry about your diagnosis but am so happy my story made you feel better. Stage 4 cancer does not have to be a death sentence. But cancer drugs alone will not heal Stage 4 cancer. If cancer drugs cured cancer, we still woudn't be searching for the cure.
The best place to research metformin is www.pubmed.gov- this is the site of the NIH and it contains all of the published medical articles from the medical community. There are many other sources of information on metformin, but this is the site doctors are supposed to read. I have done much research on cancer over the years. Metformin targets many of the key processes in the body that need to function properly so that cancer does not form. I can't list them all here. It is well known to correct metabolic dysfunction, and your metabolism is the engine that runs your body. Even though many researchers use the drug, they do not use it for cancer treatment because it is not FDA approved as a cancer drug- it is an old drug and cheap and does not make money for the cancer complex. It was discovered to have anti-cancer properties in 2006. You will probably have to get metformin from an internist or endocrinologist- but the good cancer doctors know all about the drug. My integrative doctor was well aware of metformin in cancer treatment. When someone tells you not to try it, they have no idea of all its benefits. First, let me summarize some of the well known things metformin is prescribed for:
1) lowers glucose
2) lowers insulin - I had high insulin (you need to test your blood for this)
3) lowers insulin growth factor hormone 1 (IGF-1)-key driver of many cancers - I had very high IGF-1 (you need to test your blood for this)
4)treats pre-diabetes (so you don't become diabetic) - I was pre-diabetic (measure your hemoglobin A1c)
5) first line drug for type 2 diabetes
6)treats insulin resistance (when your body does not use insulin properly -I was insulin resistant
7) prescribed for PCOS (caused by insulin resistance)
***insulin and IGF-1 are key hormones involved in cancer that oncologists don't test
Metformin worked well for me because I had many of these metabolic issues- and metformin corrected them. It was an excellent targeted drug for me. But the drug does so much more. The researches know this and many use the drug themselves.
To heal cancer, you have to identify all the sources of your cancer- health issues, vitamin and mineral deficiencies, excess metals and chemicals, hormone imbalances, emotional issues- you have to determine what toxins are in your body that created an environment for cancer to grow and address them. And that mostly requires the use of non cancer drugs, supplements and lifestyle changes. Oncologists do not take this approach which is why they frequently say there is nothing more they can do, which they have done very little. If I had used the additional cancer drugs my oncologists wanted me to use, I believe I would not have survived. I only had 6 infusions of Taxol/Carbo. No other cancer drugs.
Metformin also targets many of the key processes involved in the formation of cancer-
1) inactivates the PIK/Akt/mTor pathway (the pathway that controls metabolism) 90% of all endometrial cancers have a mutation of this pathway
2) targets cancer stem cells - the cells that cause metastasis - no cancer drugs for this
3) targets angiogenesis--the creation of blood vessels that feed cancer cells to turn into a tumor (crab like appearance)
4) helps manage autophagy- cellular recycling of our cells - you have to clear out the garbage to make room for new cells- or the old cells become food for the cancer
5) helps lower estrogen
There are so many other biological processes that metformin addresses, I can't go into here.
You can go to pubmed.gov and search metformin and cancer or metformin and endometrial cancer- I think there are over 7000 articles posted. You can print out specific articles and bring them to your doctors. It is well known to be helpful for gynecological cancers, particularly endometrial cancer.
Caris Research- it is important that your tissue was tested for genomic mutations. I personally believe Foundation Medicine is the best company as it tests over 325 genes and provides an excellent detailed report. I never saw that Caris tested this many genes, though their testing could be updated. You should find out what test they ordered for you. Hopefully they didn't just order the test to qualify you for immunotherapy- you need much more data. Once you identify your genomic mutations, you can research what cellular processes those genes control and determine the best way to address them (and it will probably be with non-cancer drugs and supplements).
I have been counseling and working with cancer patients since 2016 to help them in creating a plan to heal their cancer. I would be happy to answer more questions in detail- you can send me a personal message.
The best chance of long term survival is to get involved in your cancer treatment from the first day of your diagnosis and start addressing all your health issues as soon as you identify them- you need to heal your body to heal your cancer.
I am a living, breathing cancer-free example of how if you can find the right targeted treatments to address the causes of your cancer, you can have miraculous results. I will celebrate my 10th anniversary this fall.
Takingcontrol58
Linda
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Mercorby,
I forgot to mention. Metformin also helps people lose weight. Some people use the drug for that purpose.
Also, glucose levels between 100-125 are considered pre-diabetic. Metformin can prevent pre-diabetes from turning into full blown diabetes.
Takingcontrol58
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Metformin is prescribed for people without diabetes. It is used quite often for polycystic ovary disease. I lost 20 lbs when I started taking it. And losing weight is good for fighting cancer. I would ask my doctor about it. Mine checked and agreed I should stay on it.
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