TRIPLE POSITIVE GROUP

coachvicky

keepmovin

Please join one of the forums on cold capping. I did not lose my hair. I cold capped. It got thin and I wore a short buzz but I kept about 60% of my hair.

Vicky

tld2017

12 weeks of chemo, 5 Accuboost treatments, and 25 whole breast radiation treatments DONE! Now I've just got Herceptin and Perjeta infusions every three weeks until next March! Well, that and Arimidex for five years! But whatever, chemo and rads are done!

Homemadesalsa, I think you were going to finish rads today too! Congrats on being done and hoping your skin is doing well!

Jstarling

Hi ladies, just got home from a three night hospital stay (last chemo was elevendays ago), it wasn’t just severe side effects but I had somehow contracted E.Coli. Many antibiotics later I am happy to be home. I had great care.

Suburbs

Hi everybody. It’s been a while. I have been lurking but have been so tired of my own drama that I haven’t posted. I’m still dealing with an infection but things have been improving. I had surgery to debride the wound abscess and it seems to be working. I decided to stop the nerlynx and look forward to saying goodbye to the rotten side effects. No more active treatment. I’m tired of dealing with pills and pills to counteract the side effects of pills. So, I’m going to put on my big girl pants and push forward with my recovery. I’m going to will myself back to good health and a more normal life. Thanks for listening.

tld2017, congratulations on reaching those milestones.

Jaboo, good luck with your decision and I hope that you find a good surgical team.

Shelabela, hope you are getting better everyday. It’s been a long haul. Sounds like you have a great group of friends supporting you.

timetobebrave70

Hello everyone. My Alt is 87 and ast is 66. My doctor asked me if I have been drinking or taking pain medications and I have not. She is sending me to get liver ultrasound. Should I be concerned? I am worried😔

timetobebrave70

Hello everyone. My Alt is 87 and ast is 66. My doctor asked me if I have been drinking or taking pain medications and I have not. She is sending me to get liver ultrasound. Should I be concerned? I am worried😔

hapa

timetobebrave - are you doing chemo right now? My numbers were very similar to that during chemo and it was considered fine. They kept going up for several rounds and then turned a corner and started coming back down. By the end my Alt and Ast were back to normal.

timetobebrave70

Yes. Just went for my 4th tchp and 2nmore to go. I am worried because instead of waiting, she’s sending me to get an ultrasound.

Suburbs

timetobebrave70, of course you are worried. Another test in the midst of the demon TCHP, which is a tough regimen by itself, would create anxiety. In my view, your MO is just exercising lots of caution and due care. Imaging is a quick and painless (physically) test. You may not feel this way right now, but it seems that you have a good MO who is proactive and monitoring you closely. I hope that thought can bring you some comfort. Please keep us posted.

Jstarling, thankfully you got a quick diagnosis and care. I’m guessing you may feel a bit wrung out after a hospital stay as sleep can be hard to come by in a hospital. Hope you get some good rest and feel better soon.

LaughingGull

Congrats to those finishing radiation...yaaayyy!!! I am three weeks out and it is already a distant memory. I didn’t get any fatigue, did you girls get any?

Suburbs sorry you are still dealing with that infection but glad it seems to be resolving even if slowly. It sounds very very hard. You got a lot of treatment and I doubt more Nerlynx will make a difference at this point. Best of luck. We are with you.

LaughingGull

Jaboo,

Wanted to chime in on mastectomy and implant under pec muscle because this is what I got. Right now I still have the tissue expander under the pec muscle bc the exchange surgery got pushed bc of radiation. I am athletic and I run and I swim masters. I don’t chop wood but I have no problem whatsoever swimming vigorously, all styles, and believe me, you do use your pec muscles while swimming. One month out of mastectomy the PS gave me the ok to go back to the pool and that same day I jumped into an Olympic pool and swam a couple of miles in one sitting, no pb with expander no pain no discomfort, no nothing. I am small breasted (cup between A and so maybe that makes a difference? I have read bad stories about athletic activity and the under pec muscle surgery, but that is just not my experience. Also at 5.5 and 125 pounds the PS said I was too fit for fat grafting -not enough fat. Go talk to a PS and get things explained to you. My PS explained to me why I would be able to swim as before with the under pec surgery and he was right. 

Good luck with your decision,

LaughingGull

tld2017

LaughingGull, no fatigue and only pink skin, no burns! I need to knock on wood though because the doctor did say that it will continue to get worse for the next week or so!

JaBoo

Suburbs, I hope the infection is now really on its way out! And congrats on your half-year of Nerlynx. It's an achievement of its own.

LaughingGull, thank you for sharing your experience! I greatly appreciate it, bc we are very similar in terms of physique - I'm even smaller, so Idk about fat grafting. 1 inch and 10 pounds smaller than you, my cup is smaller B, or bigger A 🙂. Your experience with swimming sounds like a fairy-tale to me now. Wow. Of course I don't chop wood for living, just a chore I like (and my dh too, so we compete who gets to do that.)

My 3rd AC is planed for Monday... uggh. I have a long list of questions for my MO, esp. reg. Perjeta. I think I will have to print those last studies to talk about it. As far as I know now, it's not approved in our country for adjuvant setting. So I'm really curious what the MO says...

hapa

Jstarling - geez, you've had such a tough time! I hope you're feeling better.

Suburbs - You've had a tough time too! Hopefully this stuff is behind you now. What were your SEs on Nerlynx?

timetobebrave - I think your MO is being overly cautious. Try not to worry, it is probably just the chemo messing with your liver.

I am about a month PFC now and I'm not seeing any new hairs. This is concerning me, as permanent hair loss was about my biggest fear. If I could have known before chemo that my hair would never grow back, I think I would have just done surgery and taken my chances with death. I know it sounds shallow and I never thought I was a shallow person, but it's easy to not be shallow when you look normal.

Also, I called my surgeon yesterday to see if a lumpectomy is even on the table. I am less and less excited about BMX and reconstruction. And I wan't excited about them to begin with. She hasn't called back yet.

coachvicky

hapa ...It is not shallow. There is nothing on this journey that is shallow, complaining, little, or anything that could be interpreted negative. The Nurse Practicinor at my Dermatologist office said that 15% of all women encountering any type of cancer treated by chemo refuse chemo because of the threat of hair loss. I told DH that they could cut off my boobs but if I lost my hair I was going to be very pissed. I found Cerafill Retaliate by Redken a good shampoo for encouraging hair growth. You can get it Amazon.com. I think you can get anything on Amazon.

Congrats to everyone completing treatments!

Dang Suburbs ... hope this is the last of this infection.

Jstarling ... glad you are home!

SpecialK ... thanks for explaining about implant placement. I better understand why my PS goes under.

Have a great weekend everyone.

Vicky

SpecialK

hapa - my hair growth was initially quite slow. I had two others in my chemo group that started TCH the same week as me and they had tons of hair and I seemingly had zero. What was actually happening was that I had tiny gray hairs growing on the back of my head only, and I couldn’t see them because I was facing the front in the mirror and couldn’t look at the back of my head closely enough. Eventually the hair toward the front and on top started filling in, but it came in last. Once it really started growing it did re-establish my normal growth speed, but I continued to wear a wig for 4 full months until it was long enough to go without. It was still very short but Florida is HOT and I was just over the wig, lol! Herceptin can slow hair growth and some see accelerated growth once it is finished.

This photo was taken six months after last chemo and you can see how little hair I have at the temples and front.

This photo was taken just six months later and my hair looks much different, as it was before treatment - albeit much shorter. I actually had it cut several times between these photos to make it look like an intentional style

Ingerp

hapa--I was also thinking that you might be getting some fuzzies that you can't see yet. I don't know if you went down to the skin but I did a 1/8" buzz so mine will have to grow back for a bit before I really see it. I bet if you try not to think about it for a couple of weeks you'll start to see something.

SpecialK--I love when people share their hair pics. It's very encouraging! I had my first Herceptin only today and I decided *not* to send out pictures (which I'd done every Friday for the last 12 weeks) but I did take a pic with my baseball cap off and plan to do that at every infusion going forward. I told my kids I'm hoping by the third picture (seven weeks PFC) I'll see some fuzzies. I'll try not to think about it too much in between but I'm hoping seeing an every-three-weeks picture of myself will show some progress.

hapa

You guys might be right that I have some regrowth that I can't see. I never lost all of my hair, it just thinned severely on top. The edges are still thick all the way around. I buzzed it down to about 1/2" when it fell out but it has grown since then and now I look like Rick from Rick and Morty had a baby with Friar Tuck. What's left sticks out in random directions and the crown is still mostly bald. And my crotch is sporting a reverse mohawk, lol, that hasn't grown back either. This hair thing is the worst part of all of this.

VVV

This is the top of my head from 5/7. My last chemo was 4/3 (5 weeks apart!). Consider that your last chemo would have made your hair fall out. I kept reminding myself that those first 3 weeks don't count at all as being post chemo in regards to hair growth when I got impatient. I'd say it's growing steadily now but there's definitely some missing. My eyebrows barely exist still compared to before. I'm letting myself believe that my body is still working on it since it does seem to keep coming in.

At one point read people's experiences with TCHP and hair regrowth when I was agonizing over how it had been too long and a lot of women said that it took significantly longer than they thought it would and than other chemo regimens seem to. Don't know if that's actually true but it seemed to take forever for mine.

shelabela

Here is a pic of me today. 1 year and 2 month after chemo.

My legs are looking good and new boobs look great. I am more then willing to share before and afters to anyone just private message me.

Have a great weekend ladies!

hapa

shela - what kind of recon did you have? Over or under pecs? You look really cute btw. Love the flower!

Ingerp

shelabela you look beautiful!!

Homemadesalsa

You all are awesome!

TLD I did indeed finish rads yesterday. So relieved. Two surgeries, 18 weeks of chemo, and 33 rads (28 chest wall/ axillary/ sub-clavian, and 5 boosts on the scar). Now Herceptin and Perjeta til March, and my MO will start me on an AI in a few weeks, once I recover from rads. Whew.

But I raced in a big mtn bike race last Saturday- felt pretty strong- and this article was in yesterday's local paper to coincide with finishing the race and finishing rads. https://www.tetonvalleynews.net/sports/recreation/...

And my hair is grown back enough (after final chemo on May 31) that I don't feel awkward not wearing a cap or scarf. We had a couple of margs last night to celebrate with some of our best friends. Woo-hoo!

Ingerp

Congrats, homemade. You look great! I am really looking forward to heading out without a baseball cap. I’d be ecstatic if it were about when I finish rads, which will be almost exactly two months PFC.

Ingerp

Wait that article was about you? That’s amazing!! Congrats on finishing and doing so well!!!

SpecialK

homemadesalsa - you rock! And yes, you do = freaking awesome! So proud of you!

The hair photos are great!

hapa

Wow homemadesalsa. I hope I'm back out there soon after my surgery. Its one of the reasons I'm so worried about surgery and reconstruction.

Homemadesalsa

Thanks friends. I'm such an advocate for getting outside. My bike made me happy, got the blood flowing, and generally sped up the healing process- I am convinced. But everyone has their own pace, and the patience required to balance activity with rest was the most difficult challenge of the last 8 months. I just happened to get rewarded for my hard work in the bike race at the same time I finished rads.

LTWJ

Hapa, I had TCHP and it ended the end of Sept ‘17 and I wore a wig until Feb ‘18 and a bandana until April. He ceptin slowed the growth and then Anastrozole has killed it too. So thin and bald patches on top. Im using Nioxin to combat it but my MO says none of that except minoxidil work on the damage from the AI. I’m getting highlights this weekend to try and cover it some. Also some of my fingernails are suddenly falling off, even with taking biotin every day 😩

On a good note I am 3 weeks INto the Livestrong program at the ymca. I wish it had started earlier because I have to go back to work soon, and it’s during the day. I’ve met an awesome group of ladies and it’s been fun working out and chatting with them. Dropping my youngest off a total college In 10 days and we’ll officially be empty nesters.

Hope everyone has an awesome weekend. It’s supposed to rain all weekend here and we are excited

Jstarling

Homemadesal, Bravo! Love the hair pics, keep them coming as inspiration. Have first Herceptin only in a couple of weeks.