Calling all TNs
Comments
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Thanks for explaining the process, SCM.
Lyn
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To you who have had a path report, did you all get a Ki67 score? I did not receive one in my path report and all my care has been with a large teaching hospital!
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@Batesburg: I looked through my paperwork again and I couldn't find one in mine, either. And ditto for my care...
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I was told (and I read about it later) it is related to the speed of malignant cells division (and growth). My Ki67 was 53,8% and II was scared at first but then i saw that the range is enormous. Some of us have 5% and others 100%... The higher the number the more aggressive might be the tumor but on the other hand the better it responds to chemotherapy. It is just additional information. The value doesn't change the treatment (at least in triple negative) and has no prognostic value so far.
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Well, I'm that lucky one with the 100%! My tumor disappeared quickly during chemotherapy but the MRI showed residual cancer and 10 days after that it had grown into a 2 cm tumor. Needless to say, my breasts are gone. My biopsy report showed the 100% replicity (Ki67) but my path report did not show a score. My samples were just retested and I was accepted into a clinical trial. I was confirmed triple negative but have not seen a written report to see if they did a Ki67 score. I'd love to know...maybe if they got a lower score I would be a little more optimistic!
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Warrior,
What is your clinical trial? Would love to hear more about it!
Janet
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Me too!
Tridh
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Janet and Tridh,
It's a trial based in Indiana for triple negative breast cancer. They do genomic profiling on your tumor and then they have, I believe, 15 drugs that you can be matched to that are believed to be targeted to why your tumor grows. The drugs are not new; it is the methodology that is being tried. If I match to a drug I could still be put in the control group which gets the standard of care - Xeloda. If they find no match for me I would also get Xeloda. Right now I am getting some tests done - just blood and heart tests and then I wait for the news of what they found.
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Warrior I'm from Indiana and considered that trial but decided to go with A.C. x 4 and then Taxol x 12 with Carboplatin every three weeks x 4. If that doesn't work I'm definitely looking into that study. The closest one to me is in Indy at the Simon cancer center.
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Brneyegrl6608, I already did 5 months of chemo with 4 drugs - kind of need some new options. I'm just hoping that whatever I get this time is easier. I was nauseous 24/7 and got so run down last time.
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Warrior - here's to hoping that they find a genetic match for you and this time it works!
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Brneyegrl6608 - Thanks for the well wishes. This round of chemo is prophylactic. I just had a double mastectomy and am really cancer free at the moment. It's just that they think my chance of recurrence is very high.
Good luck on your upcoming chemo. I was very nauseous but not everyone is so I certainly hope you are fine through out yours!
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Warrior, thanks for explaining about your trial! At least your tumor load is out now so here is to hoping all is calm for a long time - and they find the right chemo for you! Fingers crossed for you and everyone else here!!
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Anyone heard anything new about the Metformin trial? It's been going on for a while now. I wonder if there's any preliminary findings?
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The findings for the metformin trial has been delayed to 2020 I believe.
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Thank you Brneyegrl66 !!!!
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I have not posted in a couple of years. I was hoping that in about 4 months I was going to sign in and post that I had reached my 5th anniversary after surgery. But today I had a biopsy on a lump in almost the same place as my first one (verified as suspicious by an US) . I asked the surgeon what his gut feeling was and he said he thought it would come back positive. So, will be waiting until sometime next week to get the results. He said that even if it comes back negative he wants to remove it and have it tested. Radiologist had stated that it could possibly be scar tissue. Had a mammogram in October which came back as normal (but with disclaimer about my dense breasts which might hide some tumors). The one they did on Tuesday came back with no significant change from October, but the US did show a 2.4 cm area of concern.
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oh Shirley, I so hope it's scar tissue. Please know we are here for you and praying while you wait. xo
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Shirley...I ditto jenjen's hopes that it's scar tissue and that you reach your five year milestone. Sending prayers your way. ❤️
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Shirley, - I hope the dr was just being overly cautious and soon gives you B9 results!
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Warrior, did you have any positive nodes?
Shirley, hope it's nothing. Keep us posted.
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Shirley please keep us posted. Here is hoping for scar tissue.
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Prayers going up for scar tissue.
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Lovemyvizsl...no, none of my nodes were positive. My surgeon and oncologist couldn't believe it. They told me they feel that the cancer "may be out there" in my system anyway as they can't detect microscopic errant cells. They did tell me the technology for microscopic detection is coming soon. Anyway, clear nodes is the positive I am hanging onto!
Shirley - I'm sending prayers and all the positive energy I can!
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JUST CURIOUS...ACT vs TCx6 Anyone out there who DID NOT have ACT?
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Shirley-- sending positive thoughts and prayers.
Warrior 2016--- glad to hear that nodes are clear.
Cathytoo---I only had TC-- 4 rounds.
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Cathytoo- I had four chemotherapy drugs! ACT and carboplatin! Shirley- you must be experiencing so many feelings about all of this. They always say worry doesn't change the outcome but how can you not? I put my money on it just being scar tissue. I will say prayers each morning and night for you.
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I am also a member of this club no one ever wants to join. I had a lumpectomy, AC 4 times and then 12 taxol and carboplatin chemos. Now I have completed 20 of 31 radiation treatments. I have read this thread occasionally since this fun journey began last July but I was reading a lot that scared me 1/2 to death and decided I was better off not even reading. But yesterday Mayo sent me a new schedule which includes a lot of testing in July and my heart sank. I have been concentrating on just getting through today since last July and haven't even tried to look ahead. Now that's I am getting close to the end of treatment, I have no choice.
My oncologist mentioned a new trial that is still going through the final approval process and hasn't started yet. She said she'd go into more detail when she saw me in July as all approvals should be complete by then. I believe it consists of a shot and then low dose chemo pills. Has anyone heard anything more about this? I'm wondering about those chemo pills (and there's always the chance that I'll be in the placebo group) and my hair. I really want my hair to come back but not as much as I want to live, I suppose.
I also read something here about Xeloda. When I googled it, it looks like this is for metastatic breast cancer only. Is that correct and is anyone on this? When I saw the side effects, my heart sank. I've had enough of those SE with treatment so far. No one at Mayo has ever mentioned this drug to me. Is it something I need to be asking about?
Thanks everyone.....I guess it's time to take my head out of the sand I've buried it in
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Hi, Connie1230! I'm a TN who did not get a complete response to neoadjuvant chemo, and I'm taking the Xeloda now after radiation. There is a separate chat session for TNs taking Xeloda - look there for more info. After Xeloda, I'm going to do a clinical trial involving folate protein receptors that is a monthly shot that may or may not come with some cytoxan (low dose) depending on the group placed in. Feel free to message me directly if you have any questions. My first 14/7 cycle of Xeloda was not bad, very doable. Getting ready to start round two today! It's usefulness for TN without a PCR was assessed in a Japanese clinical trial, which showed very good results. However, its effectiveness is still being tested in US.
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I had TC x 4; my onc intially said DD AC then Taxol x 12 weeks but then presented my case to 6 other oncologists and four out of the six said they would recommend TC x 4 so I went with that.
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