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I know it is hard, but please try to stay positive and keep going.
Take good care of yourself. Treat yourself a little even if you don't feel like it.

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Sorry to hear the not so good news. Hope things will improve soon. Sending you good vibes.

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Thanks lizabeth for the research there are a couple there I had not seen.

so yep after falling off ny unicorn searching my unicorn again:
http://sphotos-f.ak.fbcdn.net/hphoto...08129336_n.jpg

:-)

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Beans,

Do any of those trials look promising to you?

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lizbeth thank you but no I am absolutly not qualifying for any

I thought I was PI3K mutated but I am not I am P53 mutated only and her2 I am PI3k negative PTEN negative and BRAF negative FGR negative and EGFR negative

I am therefore not qualifying for any and now that I have had herc lapatinib TDM1 and this last one it is 4 her2 targetted treatments it is over most her2 new product trials phase 1 which usually is max of 3 prior anti her2..

I feel like swearing a lot in between the tears

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Hey FOB..sounds like your beans are running a bit low! I don't have any new ideas for you to try, it seems like some of those trials seem worth looking into. I am sending positive energy to you across the great big ocean. By the time it gets to you it will be a tidal wave of hope and hugs! xo from Suzan and Bette

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FOB,

I absolutely have no expertise here. You unicorn is outside the Her2 box for sure.

I am curious with the P53 mutation - does Li–Fraumeni syndrome run in your family?

I read P53 affects arginine and proline. Are you having any issues with blood pressure? any issues with connective tissue or vitamin C deficiencies?

I also read that P53 is associated with angiogenisis. Have you tried Avastin yet?

I found this group in the UK doing work with P53. Are you familiar with them?


EMBO J. 2011 Nov 15;30(24):4921-30. doi: 10.1038/emboj.2011.419.
Regulation of p53 stability and function by the deubiquitinating enzyme USP42.

Hock AK, Vigneron AM, Carter S, Ludwig RL, Vousden KH.
Source

The Beatson Institute for Cancer Research, Glasgow, UK.


http://www.ncbi.nlm.nih.gov/pubmed/22085928/


I'd get out the juicer and load up on organic vegetables. Focus healing energy on your lungs.



Also in traditional chinese medicine the lung meridian goes from below the lateral clavicle by the axilla down the arm over the ante cubital crease to the radial edge of the thumb. Do you have any soreness or tenderness in these areas? The lungs are associated with the emotion of grief.



I found this posted on Livestrong: The cell cycle -- the sequence of steps your cells go through during cell division -- plays an important role in your health. Defects in the cell cycle can lead to diminished cell and tissue growth, while a loss of control over the cell cycle can cause diseases such as cancer. A gene and protein within your cells, p53 plays a key role in regulating cell division and can prevent diseases, including several forms of cancer. Several nutrients from your diet affect p53 function and activity, leading to a number of physiological effects in your cells.

p53 Function and Importance

p53 carries out a number of functions to control cell proliferation and growth and prevent tumor development and cancer. The protein controls the rate at which your cells can divide, allowing your cells to divide only when instructed by your body. In addition, p53 helps your cells react to genetic damage, repairing genetic mutations in cells before they proliferate, to prevent those mutations from being passed to the next generation of cells. Finally, p53 induces cell death in cells damaged beyond repair. By promoting cell death, p53 disposes of dysfunctional cells within your tissues, getting rid of the cell before it can cause a disease such as cancer.




Effect of Vitamin C

One nutrient that can affect p53 is vitamin C, or ascorbic acid. The ability to activate p53 in cancer cells proves important for cancer treatment. Many cancer cells inactivate p53, allowing the cell to evade death and go on to proliferate and form a tumor. The ability to activate p53 within these cells may halt cell proliferation, or even cause cancer cell death. Vitamin C is able to increase the levels of vitamin C within colon cancer cells, according to a study published by the Korean Society for Biochemistry and Molecular Biology in 2011. In addition, treating the cells with vitamin C was able to increase the efficacy of the chemotherapy drug cisplatin, inducing more cancer cell death than using the drug alone.
Effect of Vitamin D

Another nutrient with an effect on p53 is vitamin D. Similar to vitamin C, vitamin D may promote cancer death by activating p53. A study published in "Investigative Ophthalmology & Visual Science" in 2003 indicates that treating retinoblastoma cancer with vitamin D was able to increase the levels of p53, as well as other anti-cancer proteins within the cancer cells, leading to retinoblastoma cell death. Though these results have not been investigated for use in humans, vitamin D might prove beneficial for controlling some types of cancer by activating p53.
Effect of Selenium

An essential mineral with an effect on p53 is selenium. Selenium contributes to a number of proteins, and some of these selenium-containing proteins can interact with p53 in your cells. Specifically, the selenium-containing protein SeMet can activate p53 in response to genetic damage, helping the cell to repair its DNA, according to a study published in "Anticancer Research" in 2006. As a result, selenium may prevent cancer development. By allowing your cells to repair themselves, selenium fights the accumulation of genetic mutations required for cancer growth. The use of selenium to prevent some types of cancer is the subject of clinical trials, as of 2011, and the mineral might present a viable cancer treatment.

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http://clinicaltrials.gov/show/NCT01664000
I too have p53 mutation and this seems a promising compound but seems only to be in US.

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Mamandoo thank you I saw it but indeed it is in the US.. I am limiting myself to europe for health reasons especially when it is a treatment that is to be carried on..

p53 mutation are present in about 70% of cancer. So thousands and thousands of 'groups' are studying it in the lab but translational research has been slow i.e clinical trials. China's gov has patented the first gene therapy treatment about 4/5 years ago but there are (including myself ) many sceptics, I would not trust the efficacy data they presented.

I have seen a few clinical trials i could join in the US unfortunatenately choices are much more limited here in the uk.

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Yes - P53 in some respects seems a cancer "holy Grail". I got results of testing back yesterday confirming the p53 mutation but also showing GBR7, IDH2 and ERB3. From my reading the GBR7 is also an issue in triple negative and currently no targeted therapy or trials. I have decided that it is only now that this testing is becoming more mainstream and that we have no idea which elements are more important in driving our particular cancer's growth - therefore, Her2 treatments are still important and may have a beneficial impact and TK inhibitors too. It seems that no-one understands the interaction of all of these mechanisms. I am in Australia and trials are now limited too. I truly hope you will find something to try. I have read about the Chinese genetic treatment but skeptical also. The one I listed is now in human trial and is interesting. Merck, Roche and Sanofi are also nearing human trials but some are particular cancer not broader. Have you considered trying to access Perjeta through compassionate access? What about other tyrosine kinase inhibitors - Afatinib and neratinib if there are trials for those and avastin as an option too.

Lizbeth - thankyou for your references. I believe had my vitamin D levels been adequate when I would not have had metastasis - I believe it is truly underrated.

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Mandamoo I am also convinced that it is my lack of vit D that led to cancer, convinced. But once it is there it is a different story..

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Amanda,
On the triple negative, have you heard of the copper depletion trials?
Karen

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Hey FOB!

Thinking of you, and wondering if you feel up to giving your dear friends an update. How's your breathing? What new plan of action did you decide on?

How's your puppy?

Miss you! Sending love and light to you across the miles!
Denise

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Thinking of you also!

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Thinking about you, too, Beans! Hoping things are looking up for you there across the pond, Amanda.

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Thinking of you FOB. You are a mighty warrior. Even mighty warriors get down once in a while. Best,
Rebecca

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Hey just checking in on you and wondering how you are doing? Im hoping you and your doctors have found something that looks promising. Big cyberhugs and prayers headed your way.

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Praying your doing well and anxiously waiting for a check in. Gods blessings to you

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I'm thinking of you too, Beans. Praying for a plan that helps. Gentle hugs.

Barb A.

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Bumping this up.

Hi FOB
Wondered how things were going and if you had sorted a new plan? Still have bed for you here if you find any trial in my neck of the woods.

Ellie