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TNBC reoccurrence mets to skin inoperable tumour In right breast and left lymph node involved

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Lulabelle39
(@lulabelle39)
Joined: 3 years ago
Posts: 13
Topic starter  

Hi,

any help would be greatly appreciated as I have bamboozled myself looking at all the many options for off label meds out there. I’m uk based so also quite limited on what I can get as well as financially limited.

I have TNBC in right breast, mets to skin and subclavian lymph node on the left side. I previously had stage 3 TNBC and had a lumpectomy and my Lymph’s removed from the right side.

The ‘good news’ as my professor put it is that I have PDL-1 expressions to my tumour so am currently on Abraxane and tentriq regime I have 2x t and 3x A a month with a week off I am about to finish cycle two and can feel things are shrinking.

i take wheatgrass 1500mg, 166mg each of of tumeric, ginger and garlic with 2mg black pepper, 3500mg beetroot, 700mg of rosemary all of which my professor knows about. I eat mostly plant based along with green tea and purified water. I also walk and meditate. I have looked at so many off label and alternative treatments I have fried my brain!!! 

Im 39 and in good health aside from the cancer and just want to give myself the best chance of surviving as loon as possible. I have read about some interesting stem cell and immuno trials in America but I had to have been through three treatments in an advanced setting I am on my first.

My professor has me enrolled on the VIOLETTE study as a back for if/when this line stops. 
I’d really appreciate any ideas on groundbreaking treatments I am looking at having a foundation 1 test but it is difficult to do and so expensive as I’m in the uk. 


   
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johan
(@j)
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Hi, here's an interesting combination:

https://pubmed.ncbi.nlm.nih.gov/27116040/

I'd also look into HDAC inhibition, in combination with other therapies, e.g. immunotherapie

Good luck!

 


   
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johan
(@j)
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@lulabelle39

HDAC6 can control tumor growth and halt metastasis in triple-negative breast cancer

https://www.eurekalert.org/pub_releases/2020-08/gwu-hcc080520.php

 


   
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Lulabelle39
(@lulabelle39)
Joined: 3 years ago
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Topic starter  

Thank you, I might be able to get Zol from my professor as immunotherapy gives you aches and pains. 
I’ll ask her about HDAC6 as I wouldn’t be able to get that on my own. I can get the iodine though.

I’m looking at going through care Oncology Clinic not sure what if you’ve heard much about them success wise? 
I was looking at doing Fenbendazole as rumour has it that Joe did it with Keytruda which is a version of tentriq but I’m struggling to find it in the uk also I’m slightly worried about interaction with the chemo as I can’t talk to my professor about it she doesn’t believe diet effects cancer or that anything other than chemo and immuno help.

I don’t want to be dishonest with her but if she can’t collaborate what am I meant to do!! None of the oncologists that I’ve come across in the uk will deviate off of standard treatment as they are bound by the nhs and nice.

Id love to find a non private one that would.


   
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johan
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@lulabelle39

I think that many oncologist worry that adding other drugs or supplements, and/or dietary interventions during active cancer treatment might interfere with the treatment. Here's a good book on this topic:

"The First Time Design of Cancer Nutrition as Specific to Treatment with Its Mega Analysis, Potential, Benefits, and Drawbacks  by Ugur Gogus"

The Kindle edition cost USD4,95. 

The results of the Care protocol ( atorvastatin, metformin, mebendazole, doxycycline) in glioblastoma are quite impressive, significantly increasing 2 year survival. 

Fenbendazole is very similar to mebendazole. I don't know why fenben is so much more popular as an alternative treatment. In a study with mice fenben increased tumor size in one mouse. (ref

 


   
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Lulabelle39
(@lulabelle39)
Joined: 3 years ago
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Topic starter  

@na thank you I also read (it was an onc quote) they don’t like other stuff involved as how can they tell what is their treatment or the other stuff.

I’ll definitely have a look at the book. I’m following Ian Gawlers meditation practice. 

I’m definitely going to try the CP as if it is similar to Fen then it maybe the key. To be honest a breast cancer mets forum I observed tried the fen and one was dead within a year, one progressed and the other day as stable like she had been for five years. It hooked me in as he said on his blog someone with TNBC mets had a full turnaround and that’s inspiring.

Then a woman had a good result worn avastin injections which don’t seem to be used in the uk for TNBC mets. 

 

Thanks for all your help.


   
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johan
(@j)
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@lulabelle39

Have you looked into Vitamin D? Have you tested your Vit D levels?

"Calcitriol Inhibits the Proliferation of Triple-Negative Breast Cancer Cells through a Mechanism Involving the Proinflammatory Cytokines IL-1β and TNF-α":

https://www.hindawi.com/journals/jir/2019/6384278/

 


   
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johan
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Lulabelle39
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Topic starter  

My vitamin D levels are normal as are all my vitamin levels the only thing that was slightly low was Iron. My blood are brilliant how bizarre but that how I’ve got to mets my body seems really ‘healthy’ aside from cancer!!! 

The BBOX looks very interesting I wish things would get approved quickly! 

I have emailed Yale today as they have a TILs trial the only issue is I have to exhaust two chemo options and I’d have to live in the US whilst on the trail. The flip side it cured someone with  breast cancer mets.


   
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johan
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@lulabelle39

You may benefit from higher than regular/normal Vit D levels.

 


   
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Lulabelle39
(@lulabelle39)
Joined: 3 years ago
Posts: 13
Topic starter  

@na thank you and that is really easy to implement 😊


   
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johan
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@lulabelle39

yes!


   
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johan
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johan
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@lulabelle39

Whole Blueberry Powder Modulates the Growth and Metastasis of MDA-MB-231 Triple Negative Breast Tumors in Nude Mice

https://academic.oup.com/jn/article/141/10/1805/4630503


   
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Lulabelle39
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Topic starter  

@na thank you. You know what’s really interesting the first time I went through treatment I craved carbs, sugar and meat. This time I can’t stand sugar, refined carbs, dairy or meat, I crave blueberries, cherries, wholegrains, vegetables and water. I honestly think my body has switched into survival mode this time. I might look into a blueberry supplement to go alongside my diet again it can’t hurt!


   
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johan
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Posted by: @lulabelle39

 I crave blueberries, cherries, wholegrains, vegetables and water. 

healthy cravings!

Here's another option:

https://sevenfigurepublishing.com/2015/09/09/the-link-between-copper-and-cancer/

https://science.sciencemag.org/content/349/6244/128.full

 


   
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Lulabelle39
(@lulabelle39)
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Topic starter  

@na Totally am happy that my body’s trying!!

 

ive seen so much about copper it’s infuriating that I’ve only found it in the US and you need a dr to do it properly!!! I’d give anything to be able to do it!!

Your information is doing good for me and another lady going through the same I pass the articles onto her do you are helping two people in one. It’s much appreciated 


   
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johan
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Lulabelle39
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Topic starter  

@na brilliant thank you that’s available on Amazon.


   
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johan
(@j)
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@lulabelle39

for skin mets topical curcumin could be an additional option, you might want to check this with your professor. 


   
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Lulabelle39
(@lulabelle39)
Joined: 3 years ago
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Topic starter  

@na that’s a good idea I use topical CBD oil on it so could add Curcumin easily to it.

 

im also going to be asking about imiquimod it’s cured skin mets before as they are the trickiest bit to treat even though mine are mild and not open.

 

thank you 🙂


   
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Daniel
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Hi @lulabelle39,

On Imiquimod I wrote a post some years ago https://www.cancertreatmentsresearch.com/imiquimod-potential-treatment-for-skin-metastasis/?

To support anti PD1/PDL1 here I discussed some ideas (the first link is on DC but that applies to anti-PD1):
- https://www.cancertreatmentsresearch.com/dendritic-cell-therapy-supporting-strategies/
- https://www.cancertreatmentsresearch.com/anti-pd-1-and-anti-pd-l1-immunotherapies/

Allso for immunotherapy here are some relevant subjects:
- https://www.cancertreatmentsresearch.com/community/immunotherapy/vitamin-d-may-help-prevent-auto-immune-reaction-side-effect-of-anti-cancer-immunotherapy/#post-3559
- https://www.cancertreatmentsresearch.com/community/immunotherapy/the-use-of-astragalus-root-in-immunotherapy/#post-3105
- https://www.cancertreatmentsresearch.com/community/immunotherapy/targeting-tumor-associated-acidity-in-cancer-immunotherapy/#post-641

Specifically, probiotics and alkalizing treatments are expected to help increase the effectiveness of the immuno therapy. Coriolus mushrroom is expected to increase the activity of T cells. If there are auto-immune reactions, Quercetin may help.

There are scientific reports looking back at patients and results indicating that drugs such as Metformin and Statins may improve the outcome of immuno therapies. If you like to look into that please let me know and I will post the links.

Here is a post addressing some relevant drugs in TNBC, specifically those mentioned at the end of the post https://www.cancertreatmentsresearch.com/community/postid/1157/

Kind regards,
Daniel

 

 

This post was modified 3 years ago by Daniel

   
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Lulabelle39
(@lulabelle39)
Joined: 3 years ago
Posts: 13
Topic starter  

@daniel thank you I will have a read through and am definitely interested in the metaformin.

 

my friend is getting Leronlimab alongside the chemo and immuno I have just emailed the dr involved as it would be a long flight that would need to be approved on compassionate grounds and quickly!! 

I will update you and thank you so much this is such an amazing site!!!


   
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jens
 jens
(@jens)
Joined: 11 months ago
Posts: 22
 

@j Hi Johan

As always thanks for all your hard work. 

This is a update for my wife Lourdes with TNBC with mets to the lungs. We are concentrating on the mitochondria strategy. In the meantime we started with an intratumoral Oncolytic Virus- they are using a combination of three different viruses. Next wed will by her second dose. Its very expensive for us and I am not sure how many months we can continue for. They will be combining it with an PDL shortly. We are concentrating on the immune system and gut bacteria to support the virus therapy. Please see the list of supplements we are using at the moment. I am concerned the cancer will get aggressive like it did for Daniels wife and many others. As much as possible we are trying to concentrate on the immune system as well as the gut microbe. I am worried we are not doing anything that's potent enough to kill the fast dividing cells. Only IV C and just started 2DG metronomically. I have 3  questions I am hoping you or anyone else might help with. Please look at the attached current list she is taking. I also just received DCA. We used it previously for a few months and did not notice any significant results.

1. She just started taking Ivermectin-Using .5mg /1kg

a) Can we combine it with hydroxychloroquine? Would that be prudent.

b) With mets to the lungs i am thinking of possibly using ivermectin in a nebulizer form. I am not in the medical field so I am hesitant in formulating an effective delivery method. I just want to do something prior to her having her breathing effected 

2. I was reading all the literature about  using silver nano particles. Because of the copper depletion side effect i think it might be useful addition to our fight. We cannot afford Tetrathiomolybdate. Can I implement  the silver with immunotherapy without risking damage to  the gut microbe. I know to use probiotics right after a few hours after use but is that enough not to compromise the immunotherapy.

3 My wife started experiencing  really awful neuropathy( mostly numbness) about 2 months before the Virus treatment. Both in the lower feet and end of her fingers. I had stopped DCA for over 2 months so I dont think thats the cause. I have examined the drug and supplement combinations she is taking and I cannot find the cause.  She was taking OLARPERIB but had stopped in October after progression. I dont think thats the cause. Please see if you can see what it could be.

Thanks.

Jens

 


   
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johan
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Posted by: @jens

@j Hi Johan

As always thanks for all your hard work. 

This is a update for my wife Lourdes with TNBC with mets to the lungs. We are concentrating on the mitochondria strategy. In the meantime we started with an intratumoral Oncolytic Virus- they are using a combination of three different viruses. Next wed will by her second dose. Its very expensive for us and I am not sure how many months we can continue for. They will be combining it with an PDL shortly. We are concentrating on the immune system and gut bacteria to support the virus therapy. Please see the list of supplements we are using at the moment. I am concerned the cancer will get aggressive like it did for Daniels wife and many others. As much as possible we are trying to concentrate on the immune system as well as the gut microbe. I am worried we are not doing anything that's potent enough to kill the fast dividing cells. Only IV C and just started 2DG metronomically. I have 3  questions I am hoping you or anyone else might help with. Please look at the attached current list she is taking. I also just received DCA. We used it previously for a few months and did not notice any significant results.

1. She just started taking Ivermectin-Using .5mg /1kg

a) Can we combine it with hydroxychloroquine? Would that be prudent.

b) With mets to the lungs i am thinking of possibly using ivermectin in a nebulizer form. I am not in the medical field so I am hesitant in formulating an effective delivery method. I just want to do something prior to her having her breathing effected 

2. I was reading all the literature about  using silver nano particles. Because of the copper depletion side effect i think it might be useful addition to our fight. We cannot afford Tetrathiomolybdate. Can I implement  the silver with immunotherapy without risking damage to  the gut microbe. I know to use probiotics right after a few hours after use but is that enough not to compromise the immunotherapy.

3 My wife started experiencing  really awful neuropathy( mostly numbness) about 2 months before the Virus treatment. Both in the lower feet and end of her fingers. I had stopped DCA for over 2 months so I dont think thats the cause. I have examined the drug and supplement combinations she is taking and I cannot find the cause.  She was taking OLARPERIB but had stopped in October after progression. I dont think thats the cause. Please see if you can see what it could be.

Thanks.

Jens

 

 

Hi Jens, I admire your dedication and hope the OV treatment will put her cancer in remission.

Regarding IVM, know that the relative safety of IVM use comes from the fact we don’t have any glutamate-gated ion channels outside of the brain and spinal cord, and only a low dose is taken just one time for its intended use. If and when IVM crosses the BBB, IVM will bind to the glutamate-gated ion channels in the brain. IMO a nebulizer with IVM delivery method increases the risk of penetrating the BBB. 

I don't think there's a problem combing oral IVM with hydroxychloroquine, but you'll have to verify for interactions with all the other drugs she's taking.

About the neuropathy, maybe lansoprazole and/or cimetidine https://pubmed.ncbi.nlm.nih.gov/3010423/

About Melatonin, why such a high dose? {ref}

I notice many drugs and supplements are related to the COC protocol or similar strategies, note that although their results with Glioblastoma increased overall survival, sadly nobody in that study was cured. In my opinion, these treatment works by suppressing cancer, not halting it altogether. 

Also, some of the drugs they propose increase lactic acid and IMO that's not good. I agree with you that gut health is of utmost importance, but have you checked on the effect of the various drugs on the gut?

I wanted to post these impressions now, but I will look into it further and come back with an update.

 

 

 

 

 

 


   
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johan
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Arachidonic Acid Induces MMP-9 Secretion in Non-Tumorigenic MCF10A Cells Through a Lipoxygenase and SRC Dependent Pathway

https://www.annalsofoncology.org/article/S0923-7534(20)30905-4/fulltext

Arachidonic acid is a polyunsaturated fatty acid found in animal sources of food, such as eggs, meat, and dairy products


   
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johan
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Aspirin 81mg, at this dose I don't think it can produce an anti-cancer effect, this is a dose possibly for cancer prevention but not for active cancer.


   
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johan
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Loratadine, although I understand the reasoning to use it in some metabolic strategies, I personally would not touch it because to my knowledge there's no en vivo proof it works to reduce cancer, and mice injected with loratadine had tumor weights 150 percent to 390 percent larger than the control mice.


   
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johan
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MMP9 is downstream HIF1-alfa, it might make sense to target both, I notice you're treatment is more MMP9 focussed.

Feedback regulation of ALDOA activates the HIF-1α/MMP9 axis to promote lung cancer progression

"we proposed that ALDOA functions to stabilize the HIF-1α protein and activate the HIF-1α pathway, via enhanced  glycolysis for the progression of lung carcinogenesis"

https://www.sciencedirect.com/science/article/abs/pii/S0304383517303774


   
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johan
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"Notably, the addition of exogenous lactate in the non-metastatic CL1-0 cells resulted in the elevated expression of HIF-1α and ALDOA proteins in a dose-dependent manner (upper panel, Fig. 4G); this change was accompanied by an increase in the migratory and invasive abilities (lower panel, Fig. 4G)."


   
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