New research on Synthetic Lethality - heard anything?

purple-flower
purple-flower Member Posts: 111
edited August 2019 in ILC (Invasive Lobular Carcinoma)

Hi. In my gobs of reading I came across this article. Sounds interesting. Anyone have any more information on it?

https://breastcancernow.org/news-and-blogs/blogs/a-new-lethal-weapon-against-lobular-breast-cancer

Is this in existence yet?

Thanks

Purple flower

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  • BevJen
    BevJen Member Posts: 2,523
    edited August 2019

    If you click through the links in the article, it will take you to another writeup of the ROLO trial which is taking place in the UK. It also provides an email address for information. Since I am lobular and I think I have the mutation that they are looking for, I've just sent an email to them. I will report back if they contact me. It says that the trial is sponsored by the Royal Marsden Hospital and Pfizer, so it could be coming to us. Who knows?

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  • purple-flower
    purple-flower Member Posts: 111
    edited August 2019

    Hi BevJen

    That's great! Thanks for the close read! I will read again too. Really interested to know what you hear back.

    It seems like w/lobular (I have that too) they have identified some very specific markers and mutations and things, so that is getting close.

    Looks like you have been through a lot, so I sending you warmth and healing. I am on the opposite side of the journey and just beginning w/diagnosis and all else looming out there. Age 52.

    PF

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  • purple-flower
    purple-flower Member Posts: 111
    edited August 2019

    Hey BevJen -

    There is also growing literature about elevated blood platelet count, and it's assistance to cancer...

    https://breast-cancer-research.biomedcentral.com/articles/10.1186/bcr3425#Tab2

    I saw elevated platelet count in recent normal blood test which caught my eye, even before diagnosis. From what I see there are a few types of interventions out there, including asprin!

    Let me know if you have heard of this or any thoughts. I am sending thinking you may be interested, but let me know if not really.

    PF

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  • ShetlandPony
    ShetlandPony Member Posts: 4,924
    edited August 2019

    BevJen, if you have ILC, you do have a CDH1 tumor mutation. It's the definition of lobular.

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  • BevJen
    BevJen Member Posts: 2,523
    edited August 2019

    Purple Flower,

    Thanks for the info. I have not heard of this, but interestingly, I'm now on Ibrance and one of the things they watch is if your platelet count drops too low. On my first set of blood work during my first cycle of Ibrance (just completed) I did notice that my platelets decreased to just below normal. They are usually pretty robust (but not out of the normal range that I can remember). So I wonder if that's one way that Ibrance works on the cancer?

    Good luck with figuring out treatment, etc. I was diagnosed at age 51 with invasive lobular cancer. They found LCIS when I was 38, and we did watchful waiting until I was diagnosed.

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  • purple-flower
    purple-flower Member Posts: 111
    edited August 2019

    BevJen - that is interesting. I wonder. From what little I have read, it looks like simple aspirin helps to reduce platelet counts. And, that platelet elevation is linked with metastisis of cancer, in particular breast cancer. But... I think that may not be good before surgery as it thins out your blood - (maybe an issue w/clotting?) I sent a note to my surgeon and PCP wondering if they had heard that and if any issue taking baby aspirin 1x a day at this point - while waiting for all treatment to begin w/ILC there.

    And, also wondering if I can start hormone therapy now while waiting, knowing that tumor is ER+ and PR+. I am puzzled as to why they don't give hormone blockers immediately to anyone diagnosed w/an invasive tumor - assuming the tumor is receptive to it. Alas, many many things swimming around in my head. I'm just at the place of landing on double mastec, prob w/implants as surgery. sigh. Still waiting for other tests and things to come back.

    Nice chatting

    PF

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  • BevJen
    BevJen Member Posts: 2,523
    edited August 2019

    Purple Flower,

    I'm betting that they tell you to discontinue aspirin pre surgery. I recently had a liver ablation procedure and was told to stop even before that, and it involved no cutting. It does have to do with clotting.

    I had a bilateral mastectomy. I had a TRAM flap with that, and it was immediate reconstruction. After chemo, I did radiation to my left side, and alas, the flap flopped. So I had a second plastics procedure where they did what's know as a lat flap (pulling the muscle from my back). But my skin was so messed up from the radiation that I had terrible problems with it -- so much so that I never got the implant put in to even me up. So here I am, years later, and I just live with it. After a while, I just didn't want any more surgeries.


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  • purple-flower
    purple-flower Member Posts: 111
    edited August 2019

    Hi again BevJen

    Wow, what a process. I am sorry to hear about the rollercoaster you have been on. It sounds very exhausting. I hope you have come to peace with where you are now and your absolute complete beauty just as you are. Screw the boob! ha ha. And, yeah, I think the aspirin question will just make my surgeon laugh (if, in fact, surgeons do laugh...). I am waiting now to hear about their recommendations and curious if they will match or differ from what I am holding in my mind. sigh. I am terrible at waiting, and an anxious worrier by nature. So, I hope after all of this is said and done, that I become a different person, holding love and gratitude for all around me.

    Crossing fingers to hear about that trial and new drug developments!

    PF

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  • BevJen
    BevJen Member Posts: 2,523
    edited August 2019

    Purple Flower (and anyone else who is interested),

    I wrote to the people who are doing the Rolo trial in the UK and they responded. Unfortunately, they are not taking anyone for the trial right now who is not located in the UK. They hope that if the trial has some success, they will be able to expand at some time in the future.

    Stinks for us, but there you have it.

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  • purple-flower
    purple-flower Member Posts: 111
    edited August 2019

    BevJen

    What a bummer!!!!!!! Did you ask if there are any sister trials here in the U.S. or elsewhere? Any info on their timeline or status at the moment? Interested in moving to the UK for a while? Good tea and biscuits there!

    Well, good to keep an eye on them anyway and perhaps more of that research is happening around here. I'll snoop around to see if find anything.

    PF



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