Repurposed Drugs Protocol?
Comments
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Hi there,
My wife (aged 40) has MBC with innumerable bone mets and a few liver mets. ER +ve, HER2 -ve. She is on her sixth treatment in the last year. Most recently she had no response to Abraxane (new liver mets, bone progression) and is now on vinorelbine. If she has no response to this she will decide whether to cease treatment or possibly try doxorubicin (which she already had in neoadjuvant setting four years ago). We have two children - 9 and 5.
She's looking at repurposed drug protocols. She has access to all the main drugs and supplements. I'm wondering if any of you have had much exposure to these and/or any success on them?
Summary of my wife's history/treatment:
- Nov 2016 - ER +ve PR +ve (slight) HER 2 -ve breast cancer whilst breastfeeding our second child (8 months' old)
- 2017 - AC-T dose-dense neoadjuvant chemo, bilateral mastectomy (5/29 positive nodes), radiotherapy, oophorectomy, tamoxifen - stage 3A. Poor cellular response to neoadjuvant chemotherapy noted
- July 2018 - recurrence - multiple bone mets. On to exemestane, radiotherapy
- Sep 2018 - ribociclib + letrozole
- Jan 2020 - disease progression - bones and liver
- Since then - trial drug (elascestrant); capecitabine (Xeloda); eribulin (Halavan); nab paclitaxel (Abraxane); vinorelbine (Navelbine) (about to start second cycle) plus radiotherapy to R femur
Possible TP53 mutation. No family history of any cancers. Had been otherwise fit and well. We are in Australia.
Best wishes,
Simon
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I did weekly doxirubicin, which is a slightly different mix than the neoadjuvant which has a curative intent. I was on it for a year. Fairly tolerable but they will watch for heart issues on it as there is a life time maximum. They added the heart protectant drug Dexrazoxane to the protocol.
And I am now doing a trial BRTTRIO036 but I don't think she would qualify as she has already been on paclitaxel. My MO has indicated that we will circle back to drugs that worked for me in the past, could this be an option?
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When you say repurposed drug protocol, I think you may be talking about one of the complementary treatment protocols like COC or Jane McLelland? There are a couple of threads from Stage IV people here, they haven’t been too active recently -
https://community.breastcancer.org/forum/8/topics/870956?page=1
This one started as a question about Joe Tippens use of fen-ben but people also discussed the other repurposed drug approaches. Long thread, you might want to skip around to find relevant information
https://community.breastcancer.org/forum/163/topics/871246?page=1
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MBC Husband, I would suggest to find a good Naturopathic doctor to help you. I have taken several off label drugs in the past but just take mistletoe and ldn now. I also take a few supplements that have shown to have anti cancer properties but I work with my doctor to make sure it doesn't interfere with my cancer meds. There is a really good fb group called repurposed drugs for cancer treatment that has a lot of information. You still have to do your own research though because some of those drugs can be harmful.
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Thanks for that GG27. The issue is she hasn't really had any drugs that work for more than a few months - except ribociclib/letrozole. Her onc said there was only any point considering hormonal therapy again if she found a chemotherapy which is working and needs a break from it. We'll see. She mentioned that there was a monthly or a weekly preparation of doxorubicin she could have; you found the weekly dosing not too arduous?
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Thanks Olma61, I'll check those out. Yes, Jane McLelland et al.
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Thanks Simone80. I don't know where to start with a naturopath. I'm a doctor and I'm sceptical as to the evidence behind many naturopathic treatments (or rather, struggle to find good quality evidence). My wife is taking some supplements, but it's hard to find any evidence regarding dosing, comparisons with other medications, etc. Is Idn iodinrle? Thanks for sharing your experience.
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ldn is low dose naltrexone. Not sure if your on Facebook, but that group I mentioned has members from all over the world and they may be able to recommend a Naturopathic doctor who specializes in treating cancer near you. One problem I find is there is a lack of studies on some of the off labels and a lot of people guess at what dosage to take.
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The worst part of weekly doxirubicin for me was that it's weekly, so you just have it & it's time to go again, but I had very few SE's other than a bit of nausea which was easily treated. My MO knows that my body has a hard time on new drugs so the easier the protocol the more likely it is that I can stay on the drug.
Sorry if I misunderstood the meaning of your question. Repurposed as opposed to revisiting previous drugs.
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MBC Husband, other groups I follow on FB is Healing Cancer Study Support Group and Always Hope Cancer Protocol Support Group.
Good books to read if your interested in using off labels are:
Naturopathic Oncology by Dr. Neil McKinney. This is an excellent book.
Metabolic Approach to Cancer by Dr. Nasha Winters. This is another excellent book. Dr Winters has been living with stage 4 Ovarian cancer for 20+ years.
How to starve Cancer by Jane McLelland. I found this book hard to read but It does have some good info. It might be easier for you since you are a doctor.
One thing I don't like about Jane's approach is that a person has to take so many pills and dosages are not listed in her book. There are so many paths cancer uses to grow I don't see how they can all be covered. It requires a lot of your own research because some of the supplements listed are not good for er+ bc.
Good luck. I hope you can find a good Naturopathic doctor to help you.
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husband, I've seen the Care Oncologyclinic mentioned, a few people here have worked with them. They are MDs in the UK who prescribe the off label drugs for cancer. I believe they use Metformin and some others -
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SImone80,
Do you know which supplements are not good for ER/PR positive cancers?
MBC Husband, I would also suggest finding a NP. My husband was skeptical as well but they know more about the body than my regular doctors. In fact, when first diagnosed with Stage 4 it was my NP that told me to ask my oncologist to run my Vit D levels bc connection with low levels and BC. So I did and he told me no that I didn't need that. Three years later he writes and publishes a paper on low Vit D and breast cancer. I don't think you can approach cancer from only one side.
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Hi Ann, I'm not sure what drugs you are on but here is a link to another thread Nicole started that had some info on supplements to avoid. https://community.breastcancer.org/forum/8/topics/...
I've also read that flax seed oil can be harmful for er\pr+, however, flax seeds are ok. Sorry I don't have any links to articles.
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