Chemo starting October 2017
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I'm so happy that you got out today, Petey. You're such a lovely person, always trying to lift us up. I hate to hear that you were in a bad place. I hope you have a fabulous weekend, surrounded by people who will make you realize how special you are.
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Lisa- thank you so much for that story! It definitely puts things in perspective. We have fought so hard already we all should be celebrating. This experience has been tough but it has reminded me what is important. I was in somewhat of a rut before all this but now I appreciate and thank God for all my many blessings.
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All, I use Nioxin on my hair. Sometimes twice a day, sometimes once a day. Also making an effort to eat protein every day to help my hair and nails.
Peoy, I love that your friend sewed that up for you. That will most certainly come in handy. I didn't order anything and regretted it. I ended up tucking my drains into my pants. Drains are a pain.
Jenn, waiting for results is the worst! I hope that you'll hear very good news soon. I'm glad that you appreciated my surgery write-up. I get stressed by the unknown.
I'm glad that others found inspiration in the DVF quote. It really is a remarkable story.
Have a great weekend, all.
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Lisa - Phew! Love the DVF story. We shall complete our treatment and face the future without FEAR! Congratulations on pCR.
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I’m four and a half weeks PFC. I still have lingering side effects. Fatigue, ringing ears etc. Anyone else? I just want to feel better 😢
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joyseeker, congrats on being done with chemo! To be honest with you, the one thing I've learned here that's turned out to be most true is that "everyone is different." I had my first and only Taxol on last November 3 and I'm just now starting to feel better. Others I read about here bounce back within a few weeks. I really do envy all of you who are coming out of this faster than I am, but I understand it's something out of my control, so I'm just happy when I hear from all my docs that it's working.
I wish I could give you better info; I just don't have it. But I'm really happy for you that you're feeling as good as you do as soon as you do. Happy Spring!
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Sara, I've heard that it takes months, not weeks, to recover from chemo. I have lingering neuropathy in my feet and a continually runny nose 3 weeks PFC. My Taxol-gnarled nails are sloooowly growing out, but still look awful. I had ringing ears awhile ago but it went away. My only advice is to take advantage of therapies recommended for cancer survivors, including acupuncture, therapeutic massage, yoga, and Tai Chi classes.
And I really think that warmer temperatures and happier skies will help immensely. It was a dark and gloomy winter for many of us, in so many ways.
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Lisa, Tell me about your toes! My fingernails all have horizontal splits in them and look as if they're growing out from the cuticle. But god forbid, what happens if I catch one of those splits on something and rip half my nail off?? And my toes...my big toes especially. The nails are now very curved and thick, and they too appear to be growing out from the cuticle. There's a big gap between the cuticle and the original nail, and there's a new nail under there.
Should I see a podiatrist and have those nails professionally removed?? I polished my toes with a super dark red polish, just so I wouldn't have to look at the purple and white spots. And will I be able to wear my flip flops this summer??? I cannot tolerate closed toe shoes now, they press down on my painful toes
Ugh...the stuff the docs don't tell us about!!! I know I should just suck it up and be happy I've beat this, but geeze, the annoyances with my eyebrows, my eyelashes, my nails and my sloooow growing hair, well, they're trying my patience! I think I'd better suck it up and admit that I'm really a very shallow person, overly obsessed with how I look.
And now that I'm almost done with radiation... up at 5am with the painful radiation skin burn on half my chest 😡
Okay, I'm done whining now. 😊
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Of the hair I miss the most, I miss my eyebrows! I have 2 hairs on each brow. I have wunderbrow and a eyebrow pencil but when I have nothing to work with, I feel it looks fake as it is. I use to have very bold eyebrows. I have no lower eyelashes and a few upper eyelashes. I didn't realize how much was gone until I tried putting mascara on. 😩
My head hair is starting to grow. I even have some crazy white ones standing straight up (maybe a inch).My husband mentioned I should clip them. You don't tell a woman who hasn't had hair in 5 months to clip her hair!! Not enough to go without headcovering but at least I can see progress.
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Hope you all had a fabulous weekend. My daughter and her husband came in from out of town, and it was nice to have some bonding time. We visited some friends, too. Everyone has been fantastic even though I have to yell at them occasionally to quit treating me like I'm an invalid! While I'm having sleeping issues because I can't find a comfortable position while my chest is healing, I walked both days with my husband. Today, we completed our normal (old) route, which is about 3 miles long. I'm also going to call and start OT this week so that I can hopefully get some range of motion back quickly. So looking forward to being released to get in hot tubs and swim in lakes and oceans again, so that I can get back to living life.
Thanks for the explanation why some surgeons recommend against shaving your armpits, Agatha. I wasn't told this by my surgeons and have, in fact, shaved under my arms since surgery. And now that I mentioned it, I was also never told to have my blood pressure read on my non-cancerous side moving forward. I've read that this should be done to avoid lymphedema, but I'm a tad distressed that my team is dropping the ball on the communication end.
Jenn, you are so funny. After the initial shaving of my head, I haven't cut my hair again, either, even though from Day 1 I had some hold-outs that started to look ridiculous. No way was I going to shave them! I'm a long way from going without a hat, but my husband is supposed to ask his hair dresser tomorrow for coloring advice. It's almost all white and I think I'll be braver going commando if I can dye it brown.
I'm starting to see baby eyelashes again, but so far my eyebrows are still not filling in, and it's been a long time since they fell out. I just spent another half hour of my life painting them on again and am looking forward to the day when I can just fill them in. At the BS office the other day, one of the ladies asked me if I was interested in microblading. She gave me the name of someone she recommends. I was actually considering doing it before I got DXd, so I'm going to look into it again. I over-plucked as a teenager and they were so thin and scraggly that I thought microblading would be a great solution.
Tewks, I can't help you on the toenails. I have neuropathy in my feet, but no toenail damage, although they do get tender when I go on long walks. I made sure that I elevated and iced my feet during transfusion, but I have no idea if that helped at all. My fingernails, on the other hand, were pretty gnarled (I posted a picture of them in the Taxol thread) from those really strong Taxol treatments 1 thru 3, but thankfully the damage started halfway down the nail. One of the residents told me that if there's healthy nail between the cuticle and the damage, I probably wouldn't lose the nail. I just trimmed them again and believe in a month, all the damage will have grown out.
Hope your radiation burn heals quickly.
So...I'm getting a little concerned that my next MO appointment isn't scheduled until 4/4, which is more than a month after surgery. Did anyone else wait 5 weeks to meet with their oncologist? I went over the biopsy with the BS. I assume since I had PCR, I won't need radiation, but I don't really want to assume. I was also told by the chemo nurses that they'd be seeing me every couple of weeks to clear out my port, but no one has ever scheduled me for this or made me aware that I should do this every now and then. Anyone else gone back to clear out your port with saline?
I sent an email off to my NP asking if I could get the port removed sooner rather than later. I've read here that some MOs want it in for a year because they'll see us every 3 months and need blood draws, but no way do I want to keep a port in when they can draw blood 4x a year just using a needle. I used to give blood all the time, so I have no concerns about needle sticks. I don't know why else I'd need a port...
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Hi Jennifer- I’ve had eyebrow issues too, As well as lashes and the started to come back about 3-4 weeks PFC. I tried wunderbrow but it’s just not the product for me and I returned it. I think a combo of a Clinique eyebrow product plus a shadow, both a little lighter than my own brows, ended up looking best. On the plus side, I don’t have to wax them anymore!
Lisa it sounds like you had an amazing weekend. Congratulations on getting out and walking for three miles, that must have felt great! We thought about doing it here but there’s still a foot of frozen snow so it’s going to be a while. I’m hoping when radiation is done I can start exercising and walking again. About your port, I insisted mine come out and it was gone a week later. The scar still itches and it’s painful where it went into the artery but at least it’s one less reminder on my chest!
Have a nice day everyone...
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Sara - I haven't had ringing, but most people say it can take months and months for chemo side effects to go away. I'm praying my neuropathy doesn't take that long because it is driving me crazy!
Tewks - My nails are bending slightly and I just this morning noticed a red bruise-ish spot on my right thumb. Mine aren't nearly as bad as yours. I wonder what they would have been if I had finished Taxol! Even with all my icing!!
Lisa - Aww shucks. Thanks for the nice compliment! I think you are right that sunny days and warm weather might help too! It's been nicer this week for us and I feel a lot better. I have to say, my RO just told me about a study that shows all the "no no"s for your cancer side are bunk. The only thing that this study show impacts lymphedema on that side is cellulitis. The rest of it, blood pressure, need sticks, etc., don't actually affect it. Now...I'm still trying to take my pressure on my opposite side, but I don't think I'd panic about that. I haven't been in for a port flush, but I have seen people who have. And yup...I was told I'd probably need to keep my port for a year too. It was bugging me yesterday, so I hope I get it out sooner, but I won't be surprised if I have to wait. My MO appt. was a little over three weeks or so after surgery because that was the soonest they could get me in.
I'll have to look into Nioxin. And I got temporary tattoo eyebrows I might try today. We'll see how I'm feeling after OT.
I better get going as I am picking up donuts for the nurses to belatedly celebrate my last day! I got a four leaf clover plant for my main nurse to thank her for being "my lucky charm" during treatment. :-) She gave up carbs for Lent and I know she won't eat the donuts! Talk to you all later!
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Ok, HER2+ gals....Question:
Can you start radiation while you are still getting herceptin? Or do you have to wait? My SIL found out today that one of her lymph nodes tested positive for HER2. The MO thinks it actually may be a separate cancer from the other tumors and lymph node (which is sort of bizarre in itself). The PS is the one who is really concerned about what this does to reconstruction. My SIL will start chemo April 3rd, so at least she gets Easter before she starts.
Any thoughts?
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Hi Petey,
I am Her2+ and completed my chemo mid February but will receive Herceptin infusions every three weeks until the end of 2018.
I will continue to receive Herceptin through my mastectomy with tissue expanders at the end of this month, through my five weeks of rads and through my reconstruction. No waiting.
My PS never expressed any concern about Herceptin and reconstruction but now I'm going to ask.
FYI
My Herceptin infusions are only 30 minutes, no need for pre meds, and for me, no side effects. I am getting Herceptin only - no Perjetta
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Hi, everyone! I have good news that I can't wait to share with you all. I hope that you all will be doing the same and sharing your good news soon, too.
I just got back from my follow-up with my breast surgeon and I got a pCR!!!
Can't even put into words how relieved I am. I didn't even really dare to hope for that result since my original tumor was over 7cm filled with triple negative cancer and the post-chemo MRI report said there was still a suspicious area in my breast. Just goes to show you that you can't give up hope - no matter what a scan says, or how big your tumor was, or whatever type of breast cancer you have.
Today my breast surgeon came in to the exam room, had a quick look at my incisions and then said, "put on your robe. I've been bursting to tell you the good news all day. You have a pCR!" I had had tears in my eyes from fear on the way to the appointment, but then I burst into tears of joy and relief as soon as my surgeon told me.
She even said the pathology on the sentinel nodes showed that not only did they not contain cancer cells now, but they almost certainly never did. I am going to believe that cancer cells never left my breast.
Now on to radiation. I was going to get a bilateral reduction because I was afraid the lumpectomy would leave me deformed, but I don't think it will now that I see it. Also, it's better for radiation to have undisturbed breast tissue.
I'm truly praying for all of you to feel this same sense of gratitude, relief, and joy that I am feeling today.
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Fantastic news Agatha! I have tears in my eyes for you!
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Thanks, Jennifer. Hope you hear the same after your surgery.
Oh, LisaRx - exactly which Nioxin products do you use. I was looking at a huge selection of their products over the weekend but had no idea which one was right for post-chemo baldness. I want hair like yours!!
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Agatha - Congratulations on pCR. I'm happy for u.
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Just met with BS and a whirlwind of appointments and info.
My MRI seemed to show chemo is working. Nothing is showing in lymph nodes. It said something to the effect of diminished tumor. I can't remember, wish I would have asked for paper copy but it will be online probably next week. I also had a 1.7 cm segment of non mass enhancement that seems to be gone now.
BS wondered if I still wanted a BMX and yes, I do. I think it's the right decision for me and she agrees. The port will be coming out and expanders will be going in. So sounds like no radiation since my PS doesn't put expanders in if radiation is needed. I will have 2 drains on each side. She will check the sentinel nodes on both sides.
Until then one more chemo next week, appointment with plastic surgeon next week and then surgery will be here before I know it.
Still dealing with chemobrain, I feel spacey like I am on drugs. I use my GPS if I have to drive more than a few miles away because I can't think what the best route will be. And I still nap nearly every day. I know both these SE probably won't go away as quick as I would like.
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Oh, Agatha, your news made my day. Congratulations! No more fear!!!
Looking forward to hearing more success stories.
And it cracks me up that after telling us about PCR, Agatha asks about hair. Hair is such a big thing with us women, isn't it? (Come on, eyebrows!) I use Nioxin Hair Regrowth Treatment for Women 2%. Here's week 4 PFC photo:
Baby eyelashes are coming in but I still have to use eyeliner or I have Cancer Girl eyes. Eyebrows are still not coming back in, though! And you can't see in the photo the out-of-control baby fuzz on my face. It's very fine and white, but doesn't know when to stop growing! Some were 3 inches long. I'm actually using scissors to trim it because I don't want to shave it. It looks so silly.
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Hi friends. Anyone else started tamoxifen? I’m two weeks in and have a come and go low grade headache. Wondering about others SE’s. Also wondering if it could be radiation related? I’m done 8/21 treatments
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Hi Sara, good to hear from you. I'm not on tamoxifen or radiation, but I've gotten low grade headaches since my surgery. I figured it was just a reaction to the narcotics or anesthesia. Or possibly dehydration because I'm not as diligent about drinking water as I was when I was on chemo.
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Simbobby - Thanks for the information. That will be helpful for my SIL. She does have to get two medications, I wonder if the other one is the one you mentioned.
Agatha - I'm doing cartwheels for you!! That is the best news ever!!! Congratulations!
Jennifer - Hang in there. I know you can make it through and the news you got was good enough to carry you through! My SIL has expanders and might do radiation, I wonder what the deciding factors are on that. I know they can't do the actual reconstruction until after radiation, but she does have expanders right now. It's interesting.
Lisa - I'm putting the Nioxin on my list of stuff to buy. :-) I wonder if there is something for eyebrows. I'd love to have eyebrows back.
Sara - I will be on Tamoxifen, but not there yet. I go in for my radiation set up appt. today and then actually start on Monday. I'll be interested to hear you experience.
I'm trying to psych myself up to have my arms up for a long time this afternoon. I know it won't be that big of a deal, but frankly, I'd rather stay home and be comfy! LOL I don't know that my neuropathy is getting better yet, but other than getting really tired easily and not having a lot of energy, those seem to be my biggest issues left over. My taste seems to be coming back which is awesome. I know it's not 100%, but it's getting there. Yay! The OT really helps with the cording and muscle issues in my left arm, so that's good. Things are progressing, which feels awesome. The sunshine we've had probably helps too. Of course, it's going to snow tomorrow though... Nebraska weather - Fire danger on Wednesday, snow and ice warning on Friday!
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Sara, my Rads consult day was a breeze. They really do try to make you as comfy as possible. Good luck today!
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Joyseeker - I finish RADS on Monday and have a followup with my Oncologist on Thursday. I will be starting Tamoxifen as well. How are you tolerating it??
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littlebee. I think fairly well. My only noticeable SE is a low grade headache. More of an inconvenience really. I had the hot flashes before tamoxifen so those haven’t really changed. I’m hoping my headaches subside once my body adjusts.
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Petey, it seems most PS will put in expanders even if radiation is needed (at least from reading these boards). Mine seems to be the exception. My husband knows the lady who recruited him to this hospital and he is highly sought after. Several women we know had him as their PS post masectomy. So I trust his opinion. I am going to ask him at the appointment next week, what happens if he puts the expanders in and then it's decided I need rads. Also found out, he has some technique to get rid of the port scar. I don't think the scar is a big deal, I am just curious what he does.
I have a lot questions to ask at my final bloodwork/office visit before chemo. I can't believe they scheduled me with the NP and not my MO for my last one. But I am going in with my list of q's.
My surgery is scheduled to start at 7:30 am and 6 hours is blocked out for BS/PS. I was given a Emend pill to take 3 hours prior to surgery (for nausea) and will be told later what time to arrive at the hospital. All I know is way too early!!
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Jennifer my experience was the exact opposite. My PS said absolutely no expander or implants either one if radiation might be in the future as rads most often ruin the expander and/or implants. That advice was what made me decide to do the flap reconstruction. Now that I'm just 5 treatments away from finishing Proton rads I can say I totally see why there's a concern. I do know that everyone is different...really I do! ... but my skin from below my boob to my neck feels and looks like someone poured boiling water on it. How any kind of expander or implant could survive that is way beyond me.
Just throwing out the "other hand" opinion...and my whole experience has been at Fox Chase which I totally trust. Illustrates how different Dr and hospitals can be.
I'll be interested to see how things turn out. Stay positive
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So interesting how different everyone does it!
Set up appointment was easy peasy. They didn't say anything about prone position, but I guess I can ask that on Monday. :-)
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Thanks everyone for the congrats. I'm still on Cloud Nine. I have my post-op follow-up with my MO tomorrow. I want to bring her and her team flowers for their office.
Lisa - of course I care about my hair!! :-) it's almost like now that the super-serious stuff is getting sorted I have permission to care about the superficial.
Jennifer - you are so close to being done. just a little bit more. i don't blame you for wanting to see your actual MO before your last chemo infusion. It's a big deal.
Petey - I had a consult with my RO before I had surgery. She said the prelim. plan was that if there was no node involvement then I'd have radiation in the prone position for 3 weeks + 4 boost sessions. If the nodes were positive I'd be on my back for radiation and it would be 5 weeks + 4 boost sessions. Re: brows, the dermatologist has me applying Latisse not only to my lash line but also to my brows.
Speaking of brows, I got semi-permanent tattoos done this afternoon. It hurt a bit, but I'm a wuss. I'm happy with the results. It will be sooooo nice to wake up with brows! Goodness knows when they'll grow in for good but these tattoos are very realistic and will last up to 2 years.
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