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2017 Diagnosed-- A Place To Share "Whats Next"

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Comments

  • tlfrank
    tlfrank Member Posts: 76
    edited January 2018

    I'm 54 and am pretty sure I'm menopausal (no cycle since last March), does anyone know what med they use? I'm pretty sure Tamoxifen is for those who still have periods?

    Sinckersmom - my RO gave both Xanex and Restoril - Xanex doesn't do anything and Restoril gives me nightmares so I wake up anyway. I'll ask for something different at my next appointment. I'm struggling with my weight prior to all this - I'll probably turn into a fat cow once I start the meds.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited January 2018

    tlfrank-- if you are post menopausal, you will most likely be prescribed an Aromatase inhibitor like Femara, Arimidex, Aromasin (I think all have genetics, too

  • chronicpain
    chronicpain Member Posts: 217
    edited January 2018

    tlfrank, tamoxifen is also sometimes used in post-menopausal estrogen positive women, though AI are considered better, more effective as I understand it


    for the insomnia, ask your doctor to consider ambien (zolpidem) to help you fall asleep, it is short-acting, and very few people get nightmares like they do with that old saw restoril which is notorious for it (it also causes morning hangovers in some) , I am surprised anyone is still prescribing it

  • KimPossible818
    KimPossible818 Member Posts: 287
    edited January 2018

    Peachy, That sounds interesting with the trial. Please let us know what happens. Glad you have peace about it either way! I, too, feel like I am more brown than my strawberry-blonde. I agree! I need my red back (so I can blame the things I say or do on that!) :) My brows and lashes are amazingly almost fully in. That seemed to take little time at all. I think I have quite a bit of hair, too for only 2 months post chemo. I have noticed some joint pain with my Letrozole. I am taking more baths. Love to have to use that as an excuse...ha. I guess I could take some Alleve, but I just deal with it. I am going to try and get on my treadmill to see if a more regular walking routine will help. It is so stinking cold here in IL that I cannot enjoy any outdoor walks for awhile.

    I was mapped for Rads yesterday and begin the 6+ weeks on 1/15. I will be done by the end of next month! WOOT! WOOT!

  • eastcoastts
    eastcoastts Member Posts: 352
    edited January 2018

    Some may be prescribed Tamoxifen even post-M if they have bone issues, for example. As AIs harder on bones. (I"m on Tamox but peri-M but will stay on this (I think) due to osteopenia.)

  • tlfrank
    tlfrank Member Posts: 76
    edited January 2018

    Thanks for all the information ladies! I'm really more scared of the meds than I was of the rads - even though I had a pretty serious burn from it.

    Chronicpain - my RO started with Xanex, then Ambien which didn't affect me at all. I was awake 1 1/2 hours after taking it.

  • PauletteK
    PauletteK Member Posts: 1,279
    edited January 2018

    I’m on #18/30 radiation, skin starts to turn red and arm and breast are getting swelling. I know this is normal and I just pray skin will hold up for 12 more sessions.

    Hope everyone have a wonderful new year, 2018 will be better than 2017.


  • 53nancy
    53nancy Member Posts: 295
    edited January 2018

    MonThor, thank you for your kind words. I finally came to realize how important nutrition and exercise is from reading so much from others. Just read a post on another forum that the writer was nine years out from an IDC and has never had chemo or radiation. Am not sure about pills. I did think, I wonder what might have happened to me without treatment? But only briefly; I remain comfortable with my choice of no chemo but did do radiation. I am stil healing but feel good and am thankful that I have a better awareness of how to live my luife in future.

    Take care, and all the best to you from here on.

  • 53nancy
    53nancy Member Posts: 295
    edited January 2018

    Paulette, I hope you get through the last 12 rads without serious issues. I am three weeks past, and still some redness on the top of my breast, which is just starting to peel, so I figure it will be cleared in a few days. I think using lots of lotion several times a day makes a huge difference. I always applied it right after rads and always used extra on the underside of my breast, then placed a soft sock between breast and skin. Overall, the pain wasn't too bad. some issues with fatigue but nothing really bad so far

  • PauletteK
    PauletteK Member Posts: 1,279
    edited January 2018

    Nancy, i agreed with you nutrition and exercise are important for us now, more vegetables and less meat and that’s what I’m aimming at now. Nancy I can see my problem Area will be under my armpit. I make sure my skin is not touching so it will always stay dry. I have small breast so I don’t have to worry much.

    I have been taking small afternoon nap, I expected some peeling, just pray for no blisters. Skin turned a little red not brown yet!


  • castigame
    castigame Member Posts: 336
    edited January 2018

    Happy New Year sisters.

    Disclaimer first. I am not affiliated w Eagle Pharmacy. It is a distributor of Arimidex for $1 per pill. It also sells many brand name prescriptions such as Synthroid ($65 for 90 day supply)

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited January 2018

    Castigame-- how are you feeling after returning to work? Hope all is well

  • peachyjeanne
    peachyjeanne Member Posts: 155
    edited January 2018

    Greetings from Blizzardville. Wow, there was some snow flying at my house today!! I went back to work on Tuesday. First day back since my mastectomy on Nov 20. I was definitely ready to get back to some sort of 'normal' schedule, but not thrilled that it meant commuting during an arctic freeze. Enter blizzard Grayson and I had a snow day today. Probably another remote working day tomorrow, too. I'm easing back into work after all.

    I went to work without a wig. I decided my crew cut would be just fine. Everyone thinks I look modern and edgy. You can get away with anything in NYC but I need a little more length/style to this crew cut to feel totally comfortable. I may end up keeping my hair short going forward. I did say I'd "cut it all off" at some point when I'd go for a hair cut. Just not at that time. BC forced it.

    So, I heard back from my RO about the clinical trial. I have been put in the arm of the trial that will not receive radiation. I was mentally prepared for either way this was going to go; but honestly, I think I feel a little relief. Maybe it's just from having made the decision to enroll and now know what the plan is going to be going forward. I do feel the knot I have had in my stomach for weeks beginning to loosen. The RO was very positive and reassuring. I really like him. He was very patient as I took my time to think this through and really wanted to be sure I was comfortable with it. I do hope it ends up sparing women from radiation if they really do not need it.

    Next up: I'll meet with my plastic surgeon and discuss scheduling the exchange. Probably March. The tissue expander has not been painful. It's more uncomfortable/tight. The cording in my arm has been more painful than anything. That's getting better with stretching.

    I'll continue on the Tamoxifen and have regular follow ups with MO, RO and BS for a mammogram/MRI in Oct.

    Onward!

  • eastcoastts
    eastcoastts Member Posts: 352
    edited January 2018

    Peachy:

    Wow, what an update! Glad you are doing well, easing into work (I get that -- I had the chance to ease back into it, too) and are enjoying your edgy haircut! And so great that you're participating in a trail that may help others avoid radiation in the future. That's cool.

    Head over to the Exchange forum/list for tons of info and shared experiences about Exchange. It helped me tremendously. Exchange was a breeze compared to UMX/BMX.

    {hugs}

  • eastcoastts
    eastcoastts Member Posts: 352
    edited January 2018

    Exchange forum:

    https://community.breastcancer.org/forum/44/topics/728266?page=1346#idx_40358

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited January 2018

    when I learned in March 2017 that I would undergo 20 weeks of chemo, I asked if I would lose my hair. The answer, of course, was that chemo for BC does cause a loss of hair. So I did like many others here have done and cut my waist length hair really, really short waiting for it to fall out. During AC, hair fell out.

    Never during last spring or summer did I think about how cold I would feel inside my home during the winter or how really cold I feel outside with such short hair.

    I wear a lined hat but with windchills -15 to -25, my head feels cold

    Just another gift from the BC treatments. Sigh.

  • PauletteK
    PauletteK Member Posts: 1,279
    edited January 2018

    DodgersGirl, I am from California it is still cold during winter with crew cut. How much hair do you have? I only got little bit since only 8 weeks PFC. however I got night sweats so I usually don’t need my cotton cap at night.


  • lojo100
    lojo100 Member Posts: 92
    edited January 2018

    Hi All! I took a bit of a 'digital vacation' over the holidays, and it was lovely!

    Rhyfelwr - I saw your question about nails. I'm 3 months PFC, and just noticed that my left big toe nail is lifting about 1/3 of the way (it's going across vertically, not going down horizontally). So, I'm still babying my nails with the Opi Nail Envy. It looks like the new growth on the toe nail is good, so I don't think I'll lose the entire nail, but we shall see! It isn't painful or infected, just lifted a bit (basically, looks like I wore ill fitting shoes on one of my hikes!).

    Like some of you, I'm wearing my short hair do and I'm actually liking it. I do want to grow it out a bit longer (at least have some bangs), but overall, will probably keep it short. About 10 years ago I threatened to shave my hair off... now I kind of wish I'd done it back then! All of my friends and colleagues tell me it looks great and edgy and fun, and I believe them! :-)

    Over the holiday my husband and I did a ton of things around the house and it really feels like a new beginning as we go into 2018. It feels so good!

    Also, I've now been on Tamoxifen for one month, and I'm feeling good. I can tell that my body is getting used to it, and the main SE for me is hot flashes, but I already had them due to chemo-pause. All-in-all, I'm doing well on the drug, and still see it as my security blanket!

    I think about all of you on this board frequently. The past eight months would not have been as do-able without all of you. I look forward to continuing our conversations as we all get to the other side of treatment!

    Oh, one more thing... if you like to make bread... I made this recipe over the holidays, and it is amazing. It is also VERY easy!!

    https://www.thecookierookie.com/dutch-oven-bread/

    Happy New Year!!

  • peachyjeanne
    peachyjeanne Member Posts: 155
    edited January 2018

    Thanks EastCoast TS. I've looked in the exchange thread and even got a recommendation on how much to fill from Whippetmom. I was not large breasted to begin with and since I had just the left breast removed, I'm going for symmetry. So far with just the filled TE, the difference is not very noticeable. The softer implant should be even better. The plastic surgeon said "righty" looks good and sees no need to fuss with it and have scars. We can always re-visit if needed.

    DodgersGirl I welcome wearing a fleece lined hat in this weather. When I had a longer/layered hairstyle, a hat could mean messing that up so I'd go out without one and be cold. Now it's opposite world and I'm warm in a hat! I wear the less heavy sleeping hats inside if there's a draft. Usually if I have a scarf around my neck, I warm up. Something about keeping the back of the neck warm seems to keep the whole body warmer. Like putting a draft roll at the bottom of an exterior door.

  • dodgersgirl
    dodgersgirl Member Posts: 1,902
    edited January 2018

    paulettek-- my hair is over my ears but not long enough to really cut yet.

    I am so used to having the long hair to keep neck and ears warm..... but as PeachyJeanne mentioned, it is nice to be able to wear a lined beanie right now. She is right. Before BC, I wouldn't wear hats cause they messed up my hair. Now my hair is too short to mess up!! Plus washing my hair is so much faster with really short hair and so is drying! But am still cold right now

  • Laxmom2006
    Laxmom2006 Member Posts: 7
    edited January 2018

    Ladies - Thank you so very much for your words of encouragement and validation.   Since my last post, I developed what's considered to be an acneiform rash from the Perjeta infusion.  Rather than want to hide under a rock, I simply bought some topical hydrocortisone cream and kept repeating to myself, "I'd rather have a rash than cancer...the rash must be a sign that the treatment is working."

    I don't have many people around me to talk to or rely on for advice, but reading your stories and insights has reminded me that I am not the only one battling this diagnosis.  That realization has helped me tremendously.

    Thank you  Smile


  • PauletteK
    PauletteK Member Posts: 1,279
    edited January 2018

    Laxmom, you should call your MO on rash, last time I had rash during taxol my MO sent me to see dermatologist now I have plenty of cream ready for rashes. You aren’t alone on this, we all are still going through this journey.


  • pink_is_my_colour
    pink_is_my_colour Member Posts: 265
    edited January 2018

    You know there's nothing worse than "Hat Hair." I like my hats!

    I'm with you all on keeping it short now. Everyone says they liked it better short anyway before it all fell out.

  • Georgia1
    Georgia1 Member Posts: 188
    edited January 2018

    Good for you Peachy! And again, THANK YOU on behalf of our daughters and grand daughters for enrolling in a clinical trial. You're helping to make BC treatments more effective and more humane.

  • peachyjeanne
    peachyjeanne Member Posts: 155
    edited January 2018

    What a difference a day makes. So I finally had some peace but it was short lived. Got a call this afternoon that one of my tumor path reports from the mastectomy came back HER2+ after all. When I first got my path report there was a notation that it was HER2 +1 - +2 equivocal so was being sent for FISH. They were unable to get a proper reading from that tumor block and needed to test another tumor block. That came back as being HER2 amplified.

    Waiting for those results was part of what prolonged the decision on rads or not.

    So now I am facing another year of treatment. 12 infusions (first 4 will be chemo with Herceptin and Perjeta and the remaining 8 just the H & P). It will be every 3 weeks. I think I will opt for a port since I do not want them using my left arm now that I had the surgery and nodes removed and a year of infusions seems like a lot to put my right arm through.

    I've definitely said some bad words and I've definitely shed some tears this afternoon. I just can't believe it. I had my guard up the whole time waiting for those results and the dr's were saying it was probably just being done to be overly cautious and chances were low it would come back HER2+. They said it enough that yeah, I let my guard down. Yesterday. Needless to say it stings to get the news today.

    I'm giving myself tonight to cry and sulk and yell and have a glass of wine at the pity party.

    I'll gear up and get through this but that doesn't mean it doesn't suck. Another year of this tissue expander, too, I guess.

    Sorry for the rant...but I really needed to rant and you ladies get it. Thank you.

  • Georgia1
    Georgia1 Member Posts: 188
    edited January 2018

    Oh for goodness sakes. I'm so, so sorry. Please do something really nice for yourself this weekend, and also give yourself some time to consider next steps on Monday. It "might" be a good time for a second opinion but of course that is entirely up to you. Sending you hugs and best wishes.

  • henrietta405
    henrietta405 Member Posts: 44
    edited January 2018

    Sorry for your HER2+ news, PeachyJeanne. I'm also HER2+ and recently finished the chemo part of my treatment and will start the H&P only part on Jan 23. H&P have really been game changers, so I'm glad we have them. I'm looking forward to being able to untangle which of my current side effects are taxol and which are them. It does suck that it extends the treatment for you, though.

    Oh, and I’m super happy to have my port. Saves all kinds of trouble.

  • 53nancy
    53nancy Member Posts: 295
    edited January 2018

    PeachyJeanne, so sorry your hopes have been dashed. I hope it goes well for you. Have a super weekend, and we'll be thinking about you.

  • PauletteK
    PauletteK Member Posts: 1,279
    edited January 2018

    Hugs ... peachyJeanne .... cancer sucks!! Take it easy this weekend and yell as much as you wanted.

    Finished 20/30 radiation, so glad I have two days off!! My skin needs time off and I hope I can sleep better.


  • eastcoastts
    eastcoastts Member Posts: 352
    edited January 2018

    PeachyJeanne:

    So sorry about the HER2 results. It's just the hardest time--waiting on diagnosis and treatment plan to fall into place. Much uncertainty and fear.

    We all need pity parties. I've had my own often during the past year. Big virtual hug going out to you.

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