Herceptin question
 

I go in today for Herceptin only (I finished my TC & perjetta combo on March 10th) and I have a question for the Herceptin veterans. Those of you who experienced a drop in your EF, does it continue while on Herceptin only or subside? Also, did you have many side effects?

Re: Herceptin question
 

The risk is about equal throughout and is ongoing with or without chemo. I was okay throughout but my echo at the end of treatment showed a drop in EF. I went from 65 to 50. Thankfully it was the end of Herceptin. It popped up again as we redid in 3 months to make sure.

Re: Herceptin question
 

Ive been on Herceptin for two years, feel very fortunate that the only side effects Ive had was fatigue on and off. Wish you well with you treatment

Re: Herceptin question
 

Fighting fire, I had my first Herceptin alone on Monday too ... how are you doing? I swelled up all over like a hoptoa, especially my feet, they're like Barney Rubble's.

I've been drinking lots of water, I think I'm going to call my onc's office in the am to ask about a diuretic if it isn't at least a bit better in the morning. Especially with the weekend coming up.

Carol Ann

Re: Herceptin question
 

The watery eyes are still here... And I also have very swollen ankles. Looks like I've been on my feet for hours on end! But that began just before I went in for my Herceptin only this past Monday. My oncologist didn't seem concerned, just said to elevate and stay active (having a hard time balancing the 2!) I too wonder if a diuretic would help. Needless to say, I'm happy the side effects aren't like the chemo!
I've got surgery in a little over a week and I'm sure I'll swell up from that... There poor feet and ankles. Do you have any support hose/socks? They seem to help me a little when I'm on my feet all day at work.
I think I see some peach fuzz! And some soft hair growing back on my legs. I never thought I'd be looking forward to shaving my legs, but I am now!

Re: Herceptin question
 

Hi Fighting Fire,

I am still really waterlogged this morning so I did call my onc's office and talked to the nurse ... the doc is giving me a prescription for Lasix over the weekend, and I have to go in Monday afternoon to see him.

I noticed some stubble on my legs, too ... not so much on my head yet, but that's encouraging! I never shaved my head, I still have wisps of hair, so when the peach fuzz starts I will go to my hair stylist and have her even things out. :) Hope its soon!

Have a great weekend ... how are your tastebuds doing, mine are pretty much back to normal, YAAAAY!

Yeah, this is SOOO much better than chemo, WE ROCK!

Carol Ann

Re: Herceptin question
 

Oh and my eyes are still streaming too, it seems to be a bit better, they're more like watery vs gushing, I'll take what I can get!

CA

Re: Herceptin question
 

My taste buds are also back to normal! Such a great feeling.
I'm going to see my surgeon on Tuesday and I hope these ankles subside by then! When I can I elevate them higher than my heart, and I can't drink enough water, so I feel like I'm doing my part. If the swelling doesn't come down I'll also be taking some Lasix. It's funny how this didn't happen when we were receiving all that extra fluid over the last 20-some weeks. Why did it wait til now??? Oh well...
Onward and upward!

Re: Herceptin question
 

I was thinking the same thing! :) But, like you say, onward and upward ... I just got out of an Epsom Salt tub nap, I put my feet up on the wall above the tub and dozed right off. It was a dirty job, but somebody had to do it!

I've taken the Lasix for today (just 20 mg, minimum strength) we'll see how bloated I am tomorrow morning ... still slugging down lots of H2O too.

TGIF!!

CA

Re: Herceptin question
 

I was on Herceptin for -- 10 yrs.

The drippy eyes came w/the Taxotere. Severely dry eyes, meaning use preservative free saline drops (I use Bausch & Lomb Soothe individual vials)!

I was told by ophthalmologist #5 to use drops EVERY HOUR all day. I did this for 2 wks and began improving. I now use first thing in the AM and last thing at night.

Also I take LUTEIN 20 mg w/1 mg of Zeathin daily.

I get all my supplements from Vitacost.com

This anti-oxidant helps the eyes remain healthy and -- stops the tearing which occasionally was returning for days on end. I was scheduled for surgery as ophthalmologist couldn't get into tear ducts. Too clogged, needed a specialist.

I took the Lutein and -- the tearing has stopped. I canceled the surgery.

Yes swelling, puffiness, face, feet, even calves from Vitamin H. And fatigue, but I have always had a fatigue issue.

EF went from 65% to 50% on H, as others have mentioned. I get regular ECHO cardiograms to check on my heart.

Nutritional oncologist recommended DR. BEST ARGENINE (500 mg X 2 on an empty stomach (I do first thing in the AM). Sustained plus immediate release. I'm back up to 65%.

They told me if I dropped below 50% they would have to stop the H. And I believed, it was essential to my survival. Hence I stayed on from '98 - '08. Been off for almost 6 yrs.

I take hydrochlorothiazide 20 mg for my blood pressure, in addition to other bp meds and it helps the puffiness, but when I look at pix from those yrs on H, I have moon face. Still, worth it all. Still did makeup, wig and earrings... Makes me feel better.

Wishing you much good fortune, my Sister!
ANDI

Re: Herceptin question
 

Andi- thank you for the info! Carol Ann do you copy?
This is why I love this blog. Info from women who've gone through this, not a Dr. Or nurse who mean well, but really have no clue what these side effects actually do to us! I feel like I'm 100 years old carrying tissues with me in my sleeves:)

Another question- my poor nails. Ivebeen soaking them in peroxide and they all (except the thumbs) have lifted away from my finger. They don't really hurt, but they ooze and look hideous. I keep band aids on them at all times, and wash them constantly when home. Any easy fix here?

Re: Herceptin question
 

Yes, I got it, thanks Andi! And Fighting Fire! I am so grateful for both of you, this forum and everyone on it! I didn't find it until right before I started chemo ... when I was recovering from surgery #3, before my double mastectomy I didn't know I was HER2+++ because that tumor was found on the "prophylactic" side.

Have a super weekend!

CA

Re: Herceptin question
 

Fighting Fire, I saw some posts that talked about vinegar, jojoba oil, and coconut oil for the sore/separating fingernail problem. Also cipro (antibiotic) if it turns out they are infected. Mine have been sore but so far they are still on my fingers, I was on cipro for a UTI so maybe it helped my nails too.

If you put "fingernails" into the search box that will bring up all the posts ... I hope they feel better SOON!!

CA

Re: Herceptin question
 

Hi FF
I've been on Herceptin continuously since Jan 2008. Had a drop in the EF early on to around 50 (from memory), so onc tested again, but from learning here about the benefit of Co-Enzyme Q10 for heart muscle function, and taking it ever since every day, EF went up again, and has been sitting ever since at 54. Only side effects I get is dry eyes, and as Andi BB mentions, I also use eye drops every few hours (Systane Ultra). I also get split nails. Other than that, I find Herceptin very tolerable. I do have weekly acupuncture, and I believe very much that it helps my body manage well when on Herceptin, or when having chemo.
Best wishes
Marie

Re: Herceptin question
 

Fire,

I too love this blog, which I didn't have during my episode 1 & 2... my joy to share. We all learn so much from sharing.

The drippy eye thing, lol carrying tissues -- I kept mine in my bra, much to my grown dghtrs dismay. Otherwise I was clutching a tissue every waking hr and had a ziploc in my handbag filled with seriously soggy tissues to throw away. Hard eating, cutting whatever and dabbing eyes alternately. But I could spot everyone on Taxotere in the chemo room -- dabbing.


Poor nails. From Taxotere -- they turned BLACK and lifted off the nailbed. I went to top dermatologist who consulted one of his big medical journals and found that this could be a side effect. He assured me the oozy stuff was not infected. That was a relief. So I stopped wearing my rings, not wanting to draw any attention to my hands, and had manis -- w/dark red nail polish to camoflauge... Assured nail tech that my nails were not infected.

After a while I had "little girl nails" one manicurist told me. Thin and frail. So not the rest of me, too bad! They are thicker now with Deborah Lippmann Hard Rock base and top coat. But my right hand nails tend to split vertically often and I carry a file so I don't snag and make things worse.



FIRE -- I READ YOUR AVATAR! These docs who are not concerned/impressed with our lumps are regularly pushed by women like us to go further. Should not be necessary OBVIOUSLY!

With you, it reminds me of when I was in my 40s and presenting with 180 over 100 blood pressure. Docs would say, you're probably nervous. I would assure them, I was not. They'd take it again and I'd be 160 over 100. They just kept ignoring me. I was too young. Same with menopause. Hot flashing all over the place, going from every 28 days between 10 and 11 A.M. getting my period and suddenly going 6-8 wks and practically hemorrhaging uncharacteristically. Docs just kept denying I was peri-menopausal. Geez!!!!!!!!!!!!

My Dad had died of heart disease at age 63. But I was a woman. And young.

When discussing family history I'd write that my Grandmother and Aunt had bc. They'd ask -- maternal or paternal. Swear to God! I'd say paternal, and they'd wave it off. INSANITY!

Fire, ultrasound needle guided biopsy AND THEY DIDN'T BIOPSY??? Determined it looked fine???



YES WE ALL NEED A DIAGNOSTIC MAMMO. And I get a sono as well cause I was lobular and they hide. Been STABLE since '99 but -- last June -- mammo was fine BUT they found something
new with the US! Had to have a needle guided biopsy. MAN, THAT SUCKED. Really hurt. And for months afterward. Still now, I sometimes get that pain when one of my 10 lb Maltese pounce on me in bed.



Stay proactive dear Sister! Ask questions. Speak up. Be a lady, but be persistent! You too Carol Ann. And ALL of us.

Marie, I too have been doing Co Enzyme Q10 (150 mg) twice a day since 1998!!! Good for lots of things! Even gums. You are amazing. You go girl!

Had my 2nd port for 12 yrs!! When I had it removed in outpatient surgical center they asked a thousand questions and when they asked -- do you know why you are here -- I said -- to remove my 12 yr old port. She glanced up at me, looked deep into my eyes and said, I'm going to write exactly what you said. And the nurses started gathering. Asking me another thousand questions, like, Do you believe your positive attitude helped?, Do you know how amazing that is and other utterly awesome questions re mindbody and spirituality!

I left on a high for mnths!!!

BE WELL. STAY IN TOUCH. SHARE.

LOVE,
ANDI