TCHP Ladies Late 2014 / Early 2015

IndyGal35 · July 2015

Looking great, zjrosenthal! I'm 6 weeks PFC, and my hair is about 1/2" long in most spots. I still have several bald spots, but I'm hoping they will fill in soon. I can see some follicular growth in areas. It looks like my head is dirty. Ha

Stephmoen · July 2015

how do some get to continue on perjeta? Is that only if you do t reach pcR im just curious as I am finishing up with tchp I have a dr appt tomorrow and will ask about it the

MinusTwo · July 2015

Steph - I will look forward to your answer. I did not have pCR and at the recommendation of the combined tumor boards, I had to do 3 rounds of Adriamycin/Cytoxan chemo after surgery & before rads (Had to cancel planned AC round #4 due to low RBC and other SEs). I was offered continuing Perjeta w/my Herceptin but since I already have neuropathy I decide not to take the chance it would make it any worse.

Due to surgery & then the 2nd chemo, I didn't start radiation until 5 months after TCHP. No one seemed worried about that time lapse.

april25 · July 2015

zjrosentha -- Always good to see photos of people smiling. The short hair style looks good. (mine still just looks like a bad buzz-cut)

You and I have fairly similar DXs, though I'msome 3 months behind you and I did Perjeta neoadjuvently with my chemo. I'm now only on Herceptin for a year, and will probably go on Femara after I finish RT in a couple of weeks. 'Hope the neuropathy and knee and hip pain get better for you... But good to hear you are doing OK otherwise.

mye · July 2015

Hi, TCHP sisters, I hope you don't mind that I'm jumping in again..,Stephmoen and MinusTwo, I too am interested in continuing Perjeta (Pertuzumab) after surgery. Currently on my 5th of 6 TCHP. Regarding its approval in the adjuvant setting and pCR, please follow this link to an enlightening discussion between Dr Clifford Hudis, chief of the breast cancer medicine service at Memorial Sloan Kettering Cancer Center in New York, and Dr George Sledge, professor of medicine and chief of the division of oncology at Stanford University, and Stanford Women's Oncology Breast Center. It is less than 20 minutes long. One of the doctors helped create the Draft Guidance for the FDA approval process and is very interested to see Pertuzumab approved for the adjuvant setting.

http://www.medscape.com/viewarticle/839145

If for some reason the link doesn't work using your phone (or asks you to log in) please try from your computer or labtop or search google under the following:

"Pertuzumab and the Curious Case of Accelerated Registration"

I hope it will help answer some of your questions I know it did some of mine.

SugarCakes · July 2015

My consult with the RO yesterday was uneventful as nothing was really a surprise. Well, one thing I didn't know for sure going in was that they will not radiate the axilla node area (axilla lymph nodes were removed), but they will radiate the lymph nodes above these. So they will radiate the super clavicle and sternum areas. Someone on one of the boards had talked about an "active breathing" machine during radiation. The RO referred to it as respiratory gating. It's a method of keeping the heart out of the field of radiation. This is Duke and they have that equipment and use it for all patients having rads on the left side. Since I will have reconstruction first and swap TE for implants prior to rads, it will be mid September before I start rads. That's a little later start than typical but everyone is okay with that schedule since I'm getting the herceptin and not just sitting here with nothing going for me in the interim. I will be treated for 5 weeks. No boosts.

I go for the next herceptin on August 3rd. and I go to the PS on August 4th for a TE fill. I feel like I'm now just WAITING.

Well, a PT specializing in lymphedema should be contacting me for an appt. The BS and RO seemed to think I was rushing this or concerned about nothing, but why wait??? In addition to being shown exercises and what not, I should be fitted for a compression sleeve. I read where some ladies wear theirs all during radiation and also ladies wear then when traveling on an airplane, which I do a lot. RO agreed it certainly would not hurt.

Oh, RO also addressed concerns of lung damage which in short she said is extremely rare or is so minor that it doesn't not affect lung capacity. Some scarring may be seen on a scan.

Lasts thing before leaving, I asked about recurrence rates with and without rads, though it won't change the plan of action. She either pulled numbers out the air or gave me old numbers based on some study, possibly for someone having a lumpectomy vs a mastectomy. She said 40% without radiation and 20% with radiation :-/ I know there isn't much data out there for those having neoadjuvant treatment (which she also stated), but I don't believe they are that high. I didn't even bother to question her numbers. I think her goal was to convey that radiation reduces the chance by 50%. My BS and MO independently had told me 7 to 10% without radiation and 1/2 of that with radiation.

zjrosenthal · July 2015

My RO also said rads reduces reoccurance by 50 percent. Praying that I dont have to stop herceptin/perjeta as my heart function has decreased. Love, Jean

MinusTwo · July 2015

mye - thanks for the article, and for the round-about way to read it. Sounds like i should have continued with Perjeta for a year since I didn't have pCR. Oh well, we make the best choices we can at the time.

Sugarcakes - glad you're at Duke. Everyone thought I was nuts to request an LE consult too, but turns out I do have mind truncal LE. I always wear gloves & gauntlets when I'm flying in an attempt to prevent LE from moving into my arms.

SugarCakes · July 2015

Anyone have hair coming in on their face? I have little hairs coming in right along my cheekbones. Just noticed them today. WTF! I have never had facial hair.

loriekg · July 2015

YES SugarCakes!! WTF is right! I thought it was dirt on my face, or pepper! Seriously?!

Paddymom · July 2015

oh! Something to look forward to in the near future

CassieCat · July 2015

I feel a little fuzzier too, though it's blonde

DaisyQ · July 2015

Yes. Blonde fuzz face. It's a very cruel insult after everything we've endured.. :

IndyGal35 · July 2015

Yes! It's been a common complaint on the March chemo board too. I'm not sure if it's the body sorting out hormones as the chemopause tapers or what, but I don't want to look like the Wolfwoman when hormone therapy starts!

SugarCakes · July 2015

Wow, so I'm not alone with the face fuzz. Funny, the whiskers on my head are grey / clear, but the whiskers on my cheeks are black or dark brown /

I glossed over them with an eyebrow trimmer yesterday, which I was afraid to do. Don't want to make them come back thicker. I REALLY hope its something that goes away. I was googling chemopause and menopause. Definitely a side effect of both. Don't know if it settles itself out, however. Same with these friggin hot flashes. I am going to ask my MO about Effexor, though I'm not wanting to necessarily start taking things now. Just want to know his thoughts on it down the road should the flashes persist. Right now, I couldn't imagine sharing a bed with someone, but I do intend on getting back on that dating horse soon. Actually, I had a bit of a date last night. Nice )

IndyGal35 · July 2015

Nice to hear, Sugar!

Even a "bit of a date" can lead to a good friendship down the road. It's refreshing to start getting back to our lives - even if we have to sort out what that entails.

By the way, I just got told that I'm still draining too much (30mL) and probably won't get my drains out at the PS visit tomorrow. Another week of this will put me around the one month mark. Ugh. I just want a frigging shower and my mobility back. The fun never seems to end around here

april25 · July 2015

Hmmm... no unusual facial hair yet... I did notice some of the stuff that was there before creeping back in (had to tweeze a couple of hairs from the corners of my mouth, upper lip area). But it was still sparser than before chemo. I didn't have much hair to begin with. Still not much body hair at all and very short eye-lashes and eyebrows and head-hair... and pubic! Geesh. TMI everywhere with this cancer thing! No leg hair. A few little things on my arms...

The head fuzz is kind of cool. I like the feel of it, actually. SO much nicer than the bald head with a few strands of hair hanging in there. Not too hot for the summer, and not too cold (was really needing to sleep with a cap before this). But I'm not going around showing my salt'n'pepper fuzz! I've got a good wig and tons of scarves and hats...!

OH... one good thing. I had some sun/age spots on my face and hands, and they have faded or gone away! I figure I've saved thousands on laser treatments and creams! Has that happened to anyone else who had age spots? (I was in the sun WAY too much as a kid! Plus, never wore any sun screen until I was pretty old... We were all into baking ourselves brown until I was in my 30s. After that I tried to stay out of the sun to counteract all the years I was in it!)

Italychick · July 2015

I have hair growing everywhere, out of control, face fur, legs, arm pits, you name it. I just pluck the face hairs out, and I figure if they stick around, I will go get laser and zap those suckers.

april25 · July 2015

Italychick -- Well, I hope your head hair is growing back like gangbusters, at least! And eyelashes and eyebrows! Some people were afraid they'd never get it back, so I guess having more hair is better than having less... unless it's ONLY in the wrong places!!! That would be bad! But as you said--lazers can fix that!

I have very little hair to begin with. Haven't shaved my legs in decades... or underarms (sorry, more TMI!). My head hair was already thinning out which was no fun, but it made me less freaked at the idea of losing my hair because of it. (My wig is SO much nicer and fuller, and I don't need to touch up grey hairs!)

I'm curious to see what my head hair looks like when it grows in all the way...

Italychick · July 2015

april25, yes hair is growing back too, but I have a bunch of weird cowlicks going. Most of it is dark, but I have some of the fishing line looking hair too. Just waiting to shed the do rag and rock the short buzz. I may dye it red like Red on Orange is the New Black lol

MinusTwo · July 2015

April25 - I have gone to my dermatologist twice a year for full body checks for many years since I baked myself in the sun too. She always freezes 20+ spots & usually has to do a biopsy at least every other year. And I've had Mohs surgery for 5 basal cell skin cancers. After chemo she was astounded that there were NO AKs anywhere on my body & my skin was wonderfully pure. Unfortunately as we all know, the cure isn't worth the punishment with chemo SEs. Now the AKs are back again & I've already had to have one biopsy. At least for most of a year, the chemo had a positive benefit.

I spent several years having facial mustache & chin hairs removed by an electrologist prior to my BC diagnosis. At first after chemo, they were stayed gone. Now they are back, like every other hair on my body except my under arms. No hair returned there.

april25 · July 2015

Italychick -- Wow, weird cowlicks? Strange the kind of changes that happen! ... I wish I could be crazy and bold with the hair dye! I always wanted to have colored hair when I was younger, but now when I have greys that I could actually color in fun ways, I'm a total chicken and just do natural colors... although nothing since all my hair fell out... but maybe I'll try and have some fun with it when more comes in! I haven't even felt like getting some fun wigs! Gah!

Another interesting thing, about cowlicks... I always knew I had a very strong cowlick, but I could totally see it when my head hair was just growing in! There was a spiral going all around from the back of my head. It was pretty crazy-looking. I was hoping it would go away a bit, but no! It always made a weird bald line at the back of my head when I had hair...

MinusTwo -- Ah, rats. Too bad the spots don't stay away! My sister just found a little pre-cancerous spot that she had lasered off. Her dermatologist said the alternative was a sort of chemo-like treatment. As I was doing chemo at the time she nixed that idea! I had a look at my bare scalp to see if there were any suspicious-looking spots, but of course the chemo had gotten rid of anything. I guess the chemo was at least good at getting rid of a few possible problems for a while, though! I did feel like I had baby skin for a while there. It's still not bad now (3 months out from chemo), but I can tell it's getting back to normal...

Weird about what hair comes back and how, and what doesn't! Good that you don't have to worry about shaving underarms, at least.

I'm hoping my head hair will grow back thicker and longer! One can dream, anyway! ^___^

raleighgirl · July 2015

hey ladies! Have any of you been experiencing mouth sores post chemo? I finished chemo May 4, and have at least four mouth sores at any given time. I am so over it! I didn't get too many during chemo, so I don't understand why they are appearing now. I am still on Herceptin and Perjeta so maybe it is a side effect from this

MinusTwo · July 2015

raleighgirl - call your MO and get the "magic mouthwash". Below is a post from the Mayo site. Mine was a compounding prescription & something like lidocaine to deaden the mouth, an antacid and an antihistamine.

Magic mouthwash usually contains at least three of these basic ingredients:

An antibiotic to kill bacteria around the sore
An antihistamine or local anesthetic to reduce pain and discomfort
An antifungal to reduce fungal growth
A corticosteroid to treat inflammation
An antacid that helps ensure the other ingredients adequately coat the inside of your mouth

april25 · July 2015

I had a tender mouth during chemo and my MO prescribed L-Glutamine. I'm not sure if that was it, but I never got sores. And yes, the typical treatment for that is a mouthwash... there are over the counter and prescription varieties.

I'm still getting over some chemo SEs (I finished at the end of April), so I wouldn't be surprised if some things hang in there...

I'm not getting Perjeta, now, only Herceptin... I wonder if that makes a difference?

raleighgirl · July 2015

Minustwo and April,

I've had the magic mouthwash which doesn't seen to help too much. I just wanted to see if any of you guys still had the ulcers several months post chemo. Maybe it is the Perjeta. Ugh. I have 6 more months of this! Maybe I will try to see if L Glutamin would help

CassieCat · July 2015

The mouth ulcers were never too bad for me and seemed to only happen during chemo. So sorry you're having to deal with them. Our GI tracts take a real beating with TCHP.

april25 · July 2015

I can't remember exactly how much L-Glutamine my MO had me taking... He said to get prescription grade--came in big plastic canisters with a twist-off top. I had to measure out the powder-- 10ML? Ugh. Like a table-spoon or so (I had a plastic measuring scoop), and had to mix it in water and drink it 3X a day... It was not pleasant! No taste, but it was gritty!!!! There are pill forms, otc, but my MO said you can't trust what's in those. (I still didn't manage 3x a day most days, and often took the otc capsules.) He wanted me taking it all the time I was having chemo.

I know some people have also taken it... but not sure how common it is, or what it exactly is supposed to do. My MO just mentioned "mouth sores" in conjuction with it... I hope it works! (He's a very reputable MO, and not overly into prescribing homeopathics or other things, so a bit conservative, but up-to-date on things.)

raleighgirl · July 2015

thanks ladies for all of the feedback! I'll see my MO tomorrow and ask her about the L-glutamine. It sounds like it is worth a shot!!!

MinusTwo · July 2015

Raleighgirl - I took it during chemo - supposedly to ward off neurpathy. Not useful for that, but I have to admit, I wasn't very regular about taking it. April is right, it's gritty & I just couldn't make myself drink it. Hope you MO has some good ideas.

TCHP Ladies Late 2014 / Early 2015

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"Pertuzumab and the Curious Case of Accelerated Registration"

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