Calling all TNs
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I did Foundation One test and thats how they reported it. It means there was a EFGR amplification but nothing that strong.
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Santabarbarian see I was operated first so I don’t know my response to chemo . I’m brca1 positive and just found out I’m egfr 60%(I don’t know what this means). I’ve had a ctdna test done and now going to have a chemosensitivity test to see if I was resistant to treatment and also because I was looking into parps for after treatmen
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There are drugs that target EFGR. A friend of mine is one one for lung cancer and NED for the last 5 years.
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Hello everyone,
I am stopping in after a long time away. I am now an official 10 year survivor. I am an oldie on this thread...I think I started on Page #2. It was an absolute lifeline for me. I got to know so many wonderful women and men too. Sure helped me through so many sleepless nights and many days of waiting for appointments and test results.
But I am doing very well. Living what I would consider a normal life. I eat pretty good(stay away from fast food) but also enjoy fun things occasionally like pizza or Chinese carry out!. I exercise regularly and make attempts to keep stress at a minimum (let go of things that just don't matter) And drink wine when ever I get the urge to have it.
I am still a NAVYmom. My son has re-enlisted. He already has more than 10 years of service completed and will do another 10.
I no longer see my oncologist...NO NEED. I see my PCP every 6 months. He is a good MD and listens very closely when I talk about any concerns. Same Doctor that gave me script for Metformin when I showed him study results.
Wishing all who come here healing and comfort.
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Yay NavyMom!!! Great to hear about these milestones!!!
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WooHoo on 10 years NavyMom! I know it’s an awesome feeling to be free from the Oncologist! Great news!! Tell your son thanks so much for his service! My nephew just got accepted into the Army Special Ops and enlists on Wednesday! So proud of him
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Navymom and Luv! So good to read your posts! Wonderful updates, - thank you for sharing!
Hugs and be well wishes to you, and of course, all here! This board has made this "journey" do-able for me!
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Hello to all!
Thank you for sharing Navymom! And thank your son for his service, Luv, too. My Marine boy is home and is in the FDNY Academy.
I wanted to share that I am now 4 years from treatment. Woohoo! And yes, this thread has been soo supportive!
Wishing all still in treatment an easy time and rapid recovery from chemo and surgeries. ( I actually love my new “boobs.")
There is light at the end of the tunnel!
Arlene
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Thank you. Love your story and outcome. My wife of 37 yrs. has TNBC, stage IIA, no nodes. Just finished #2 of 4 AC then on to 12 T chemo treatments. She is doing really well. She is tough. Misses her hair and babysitting 2 of our 6 grandkids. Thank your son for his service. I was a federal agent for 25 yrs. We retired in 2011. She is BRCA 2. Her dad did his 1st chemo today for pancreatic cancer. We are anxious for Sept 26 which is the last scheduled chemo. One day at a time and God has been so good to us for such a long time. Love to hear such wonderful outcomes. We are ready to share ours in the years to come!! Let's do this.
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Clinical study at Mayo for TNs on the potential for a vaccine against recurrence. Take a look to see if you are eligible and interested.
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Yay, NavyMom! I'll echo the thank you to your son for his service. The thank you extends to you as well since it must be very difficult as a mother to know that your son is sometimes in harm's way on our behalf.
jrominger, I'm sorry that your wife has joined our ranks, but it's great that she has a supportive spouse. I'm sure that you will find the forum a great source for information and support. I hope that your wife's remaining chemo treatments go smoothly.
Last month marked three years since my diagnosis. My treatment path was very circuitous and long so it will be more than a month before I'm three years out from surgery and a few months beyond that for radiation. Still, so far, so good in terms of no evidence of disease so I find that encouraging.
Lyn
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Lyn - congratulations on your upcoming anniversary! And thank you for sharing
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Travis, Kber!
[Dear Autocorrect, Travis??? That wasn't even close to thanks. Doh!]
Lyn
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Lyn-- my MO counts from diagnosis!! Imagine my joy when I found that out!
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Excellent, Santabarbarian!
I've seen different interpretations...from diagnosis, from surgery (if done before chemo), from the last chemo or even from the conclusion of all treatments. I've noticed that some studies don't clarify. If one has delays due to complications, surgery scheduling problems, trying to get second opinions, etc., the dates can be very different so it would be helpful to explain the assumptions used when researchers address survival odds. I know that it doesn't change the outcome for any of as individuals, but I still like to know.
Lyn
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Congrats VLH, sending u a cyber hug...
It does seem werid that everyone yr out is figured on different dates dx verses rads or surgery.. maybe if they wld have a standard..lol too much im sure..
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I had surgery before chemo, and my MO counts my first surgery as my date.
@jrominger, your wife’s diagnosis sounds similar to mine. Hope her treatment is uneventful.
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Navymom, Arlene, LUV all great to see you posting. Congratulations on all the milestones being celebrated to help encourage those that are facing treatments.
Hugs to all.
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This just popped into my head...are there any men with triple negative cancer? The few gentlemen I recall seeing on the forums have all been hormone positive.
Thank you, urdrago71!
LoveMyVizsla, I need to ask which date my oncologist uses at my next visit. I meant to ask last time, but was thrown when the PA walked in instead of the MO I love. I should look at it as good news that my MO is focusing on patients with a greater need of her expertise, but I admit that I selfishly felt a bit abandoned by the person who guided me through my treatment. It didn't help that the PA knew nothing about the Peruvian study presented in December in San Antonio suggesting that my changes of survival are far worse since my chemo was delayed. Again, it won't change the outcome, but I want to know that the people in charge of my care are staying up-to-date on research pertinent to my condition. I see a "general" oncologist, not a breast specialist, and I can only imagine how much information floods them each day requiring work above and beyond the patient contact hours. i also know we triple negative folks are also in the minority when it comes to BC subtypes. Still...
Lyn
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Lyn, that is exactly why I left my small town and went to a big city. For a major cancer center with docs who specialize in different cancers. My hometown general oncologist gave me wrong answers when I interviewed him, talking about oncotyping, etc. Nope.
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hope all is well
i am wondering how long you girls waited after chemo to have your surgery?I also wanted to add, who here had a MX and still got radiation? My mom’s BS said she won’t need it if she gets a MX
Thanks!
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For me, it was 5 weeks between chemo and surgery. I had a mx and radiation. It was recommended since I had 1 positive lymph node.
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Hi - I had chemo first as well. Surgery was 4 weeks after chemo. I had a BMX. I achieved pCR, but radiation is still recommended. I'll start in mid-July - about 6 weeks post surgery.
FWIW, I had 4 different doctors recommend radiation therapy in my case. Although I achieved pCR and had a BMX, the consensus was that with TNBC and how aggressively it presented initially, that I would most likely benefit.
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We were told we would wait 3 to 4 weeks after chemo to do BMX. My wife has no lymph node involvement as of now so they don't believe there will be a need for radiation. However we had to delay chemo (#3 AC for 11 days due to an infection) so not sure if that will change things. #3 AC is this Monday.
J
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I had lumpectomy prior to chemo. Chemo was scheduled to start 22 days later. In actuality, my first infusion was 36 days after surgery. With lumpectomy comes radiation, so that will be the last step.
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I am doing chemo first, and my surgery is scheduled 6 weeks after. I was told if I have a lumpectomy, I will need Sentinel Node removal and radiation. If I have mastectomy, I will need sentinel node removal and will NOT need radiation. Part of me is thinking I may push for radiation even after mastectomy, because there is a study being done on radiation after mastectomy for TNBC that makes it appear to help. The question is whether insurance will pay for it.
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Notdefined - according to my medical team at MD Anderson, radiation after a mastectomy for triple negative is often the "standard of care" and therefore covered. They have a multi factor algorithm that considers the hormone status of the cancer (TNBC in our case), size of the tumor, lymph node involvement, whether pCR was achieved after neoadjuvant chemo or not, and the tumor grade. There may be other factors as well. Anyway, if you check three boxes, you are a candidate for radiation. In my case, I was TN, had a tumor of 5+ cm, and lymph node involvement, so I was offered radiation. I only checked three boxes, so I was considered borderline, but I'm going to go through with radiation once I heal from surgery.
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kber so happy for your chemo outcome!!!
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Kber, CPR is such an amazing thing. Very happy for you. Your info is very much appreciated as you and my wife's diagnosis is close. Thank you for all your info. We can't wait to be done with chemo, CPR'd and on to the next procedures!
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what is pcr? And how is that found out?
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