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  • Volleyballmom2008
    Volleyballmom2008 Member Posts: 54
    edited May 2019

    santabarbarian, I have a question for you or anyone else. We were pretty much on same timing with chemo, surgery and rads. I finished chemo December 20th. I heard about a lot of people with bad nails and toe nails. I never had an issue til this week, I lost my 2 big toe nails. Are you still getting side effects?

  • HockeyChick_CA49
    HockeyChick_CA49 Member Posts: 31
    edited May 2019

    I had nail issues with Taxol. Didn't loose any finger nails, (thought I would) but they looked bad. Interestingly, my finger nails were thin before chemo. Couldn't grow them very long or they'd break. They grew back thicker and healthier. Go figure. I lost almost every toe nail. They just fell off. Most have grown back now except for my big toe nails still have a ways to go.

    Was told Taxol would be easier than AC but I found that Taxol was harder on me.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited May 2019

    Volleyball, No I have not had any issues. I had only a deep and lasting anemia that has finally lifted! Sorry you are dealing with this!

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited May 2019

    Hi Cathytoo!

    As for recurrence rates, my MO told me i’m atabout 8% risk.

  • FrackingHateCancerMPBC
    FrackingHateCancerMPBC Member Posts: 41
    edited May 2019

    Hi guys,

    Long time no talk! I've been in finals. Are we talking about booze and boobs?

    I'm with Moth. Very very likely Booze Causes Cancer. They're just looking for space on the wine bottles next to the birth defects warning to print the words: "Alcohol Kills."

    I don't drink at all. II gave up booze entirely for health reasons two years ago, pre-cancer. I mean it's sugar which is already a no-no. On top of it it's poison. I got enough poison with the CHEMO. I'm going to restrict my toxins to the ones that prevent cancer. I'm a little pissed at booze for sure. At least the cigarettes have the warning labels. And I will also never drink again!

    But, I do not judge and I do not begrudge. Diet is a personal choice. This is all about personal freedoms. I am never ever going to preach at anyone about anything. That said I'm going to do a little shout out for AA down below, in case anyone needs it.

    Hell everyone's already got cancer here. We're not exactly in the prevention stage. Or or we? If we're not dead we are vigilant. At least I will be. I mean if you get attacked by a lion one time, it is normal to take precautions against lion attack. I'd say that lions are nothing at all like lightening and neither is cancer. If you've had it once, that lion might still be around somewhere, or maybe it's attracted to your perfume? Who knows but a few changes and some precautions would be wise. When oh when will they come out with an anti-lion spray?

    I'm just thinking, the mediterranean diet betrayed me. Lived in France for 6 years and 18 months in London. Can not believe anyone in the cancer diet community is still recommending wine. There is absolutely no indication for alcohol medically or dietarily unless you are in alcohol withdrawal and then they have meds for that. And if they are using it as a lure to start eating non processed foods then they should point that out. Like this, eating this way is absolutely awesome. If you subtract the booze you have a really healthy and nurturing diet for mind body and soul. So enjoy all this but swap out the wine for evian or san pellegrino. That would be fine!

    I can see it would be really hard for someone with a spouse who drank around them in early treatment though! That would piss me off for sure. There you are miserable on chemo or post surgery or pre surgery or waiting for ads etc. and there's this insensitive idiot drinking, so basically getting high. I mean when people around us are sick and going through treatment we don't get high around them we take care of them. Or at least don't get high around them. Show some respect and booze in private if you can't abstain temporarily.

    Any way, if anyone here thinks they might have an alcohol use disorder small or large, you will never find a hipper, cooler, more fun, and more supportive group of buffoons than the complete lunatics who join AA. Just saying, it's a ton of support and no one's more positive. No one. They are trained in root level positivity. The hard way. The real deal. You'll find people there with cancer, people there with everything. And alcoholism has a much higher mortality rate than cancer and also has a higher relapse rate. So you won't feel like the odd one out on death's door. Just hold your breath on the way in as you pass through the cloud of smoke. They all ideally quit smoking too, eventually but the first 3 years it's about the booze, so there's a lot of smoking outside.

    There's got to be someone. When the topic comes up there usually is. Someone will search the site who maybe has a booze problem and find this thread maybe... who knows?

    These below links are links to AA meeting apps to use on your phone. Surf to the link on your phone. Download it for free and you have it if you need it. It finds the meetings and the times and give you directions and descriptions and they are free apps. Just in case someone wants to check it out. Or maybe has a friend. Literally don't need to have your wig on to go. Show up on a walker no problem too. Completely done up with hair and makeup fine as well. You just show up. It is fun. Also, just repeat the words they say and worry about your immortal soul and your belief in god or a higher power later.

    https://play.google.com/store/apps/details?id=org.meetingguide

    https://itunes.apple.com/us/app/meeting-guide/id1042822181

    That's all. I'm off to RADS! Loving rads.

    Booze and boobs! It's the sexy cancer for sure...

  • moth
    moth Member Posts: 4,800
    edited May 2019

    FrackingHateCancer - hey, hope your finals went well! Just a fist bump from another gal in school...but my finals were in April and I'm back in class (cause it's a 3 year, year round program) so i have midterms again in 2 weeks /eeeek/

    you're doing good deeds here, sowing the AA seeds, one day at a time

  • Dee1987
    Dee1987 Member Posts: 22
    edited May 2019

    hey guys were any of you found to be egfr positive?

  • MountainMia
    MountainMia Member Posts: 1,307
    edited May 2019

    Dee1987, I don't know that I was tested for EGFR.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited May 2019

    I have 'equivocal' EFGR amplification...

  • Dee1987
    Dee1987 Member Posts: 22
    edited May 2019

    Santabarbarian what does that mean? I just had egfr 60

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited May 2019

    I did Foundation One test and thats how they reported it. It means there was a EFGR amplification but nothing that strong.

  • Dee1987
    Dee1987 Member Posts: 22
    edited May 2019

    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

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited May 2019

    There are drugs that target EFGR. A friend of mine is one one for lung cancer and NED for the last 5 years.


  • NavyMom
    NavyMom Member Posts: 1,099
    edited June 2019

    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.

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited June 2019

    Yay NavyMom!!! Great to hear about these milestones!!!

  • Luvmydobies
    Luvmydobies Member Posts: 766
    edited June 2019

    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

  • anotherNYCGirl
    anotherNYCGirl Member Posts: 1,033
    edited June 2019

    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!

  • greenae
    greenae Member Posts: 540
    edited June 2019

    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


  • jrominger
    jrominger Member Posts: 349
    edited June 2019

    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.

  • VLH
    VLH Member Posts: 1,258
    edited June 2019

    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

  • kber
    kber Member Posts: 394
    edited June 2019

    Lyn - congratulations on your upcoming anniversary! And thank you for sharing

  • VLH
    VLH Member Posts: 1,258
    edited June 2019

    Travis, Kber!

    [Dear Autocorrect, Travis??? That wasn't even close to thanks. Doh!]

    Lyn

  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited June 2019

    Lyn-- my MO counts from diagnosis!! Imagine my joy when I found that out!

  • VLH
    VLH Member Posts: 1,258
    edited June 2019

    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

  • urdrago71
    urdrago71 Member Posts: 559
    edited June 2019

    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..

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited June 2019

    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.

  • SA8PG
    SA8PG Member Posts: 371
    edited June 2019

    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.

  • VLH
    VLH Member Posts: 1,258
    edited June 2019

    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


  • LoveMyVizsla
    LoveMyVizsla Member Posts: 813
    edited June 2019

    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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