Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

Had Herceptin only for two rounds before beginning Taxotere/Carboplatin.

Herceptin only side effects:
runny nose from the start. Occasionally very dry.
heart was working harder - found it difficult to walk uphill sometimes. (53 yrs old: walk 2 miles to work and run 30 mins daily)

With 3rd cycle of Herceptin, started Taxotere and Carboplatin.

Heart function continued to suffer. At 3 month check up, LVEF had declined from baseline of 67 to 50.

Started betablockers and heart function has improved considerably. Not sure what the next heart test will show.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

RAZm sometimes side effects happen long after a treatment. Then it is hard to attribute it to something you are no longer on.

I am not aware if you were premenopausal prior to the chemo, but one of its effects is to put many into early menopause. Lack of estrogen seems to be related to joint complaints ( that is why they think so many on AIs have significant joint complaints), so it is possible your complaints are from late effets of the chemo (unless you post back that you have been postmenopausal for years)

Have you started on AIs yet?

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

Andrea,
I love your statement: "EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE."
Just what I needed to read today.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

herceptin side effects: i had none. i was on it for ten months which i was told was as effective, here in canada, as a year's worth, "studies said"

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

Herceptin side effects: IV and Intrathecal Herceptin for Nina has resulted in disease remission. No other obvious side effects. No heart issues (MUGA is great, but Herceptin attacked my mother's heart and the disease progressed to brain, bones, and lungs before she passed). I will never give up the fight against this tyrant. Godzilla will not win this time around. If you remember V, a biological engineer ended the destruction. I intend to be that person.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

I've just started Herceptin alone. I had five TCH treatments, but onc stopped them due to worsening neuropathy in hands and feet. The first treatment, three days ago, was uneventful. None of the usual nightmare side effects of taxotere and carboplatin. I had a disturbing episode Thursday, after the treatment on Wednesday, which has been explained in this thread. My husband was driving me to a doctor's appt, and I could not for the life of me get a sentence straight. I gave up after several frustrating tries. As someone else has said, I knew what I wanted to say, but I couldn't get the words in the right order. I was afraid I was having a stroke, but nothing else seemed amiss, so I went on to my appointment and did not experience any other episodes. So far so good. I've heard several people use the expression "chemo brain," so maybe this is par for the course. I don't like it, but as long as it's not permanent I can deal.

Best to all,
Lynne

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

Hi there!
I haven't been here in so long, but I thought I should post this as I am a Herceptin Life-timer. I have been on Herceptin since Sept, 2005. Every 3 weeks, via Port, without fail. I have Syma (Canada) or Mugga scans every 3 months and see my onc. every 3 months. I am lucky that the mets to both lungs that were discovered in 2005 are completely gone and I have had complete response to Herceptin. Side-effects? Nothing I would ever complain about but since you asked... my nails are crap, therefore I get bio-gels once a month (but its $$!) and sinus probs with sores in nose but like I said nothing to complain about. My heart is fine, I dragon-boat race on weekends and practice 3x a week with a whole boat (22 women) of breast cancer survivors. I am lucky to be able to have herceptin as I am a 4 time survivor, since 2000. When I asked for Herceptin in 2002, I was not able to have it- I didn't have mets. Boy am I glad that rule has changed and now it is given as part of a regiment for Her2pos patients. Memory loss- not from Herceptin- but def. from chemo. Always happy to speak to anyone about my story, about Herceptin especially since it worked so well for me. By the way, I was given the choice to go off it .... I said "NO WAY! It's the only thing keeping me alive"! :)

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

Red Hen my daughter no longer calls it Chemo Brain she renamed it "Broken Brain" lol
I will say since my chemo has ended my broken brain is healing lol. But I would still say mention it to your MD

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

I have been on herceptin for 3 months with taxol and just had first herceptin alone infusion Friday thus far worse s/e running nose.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

I have had 3 dx - 2000, 2003, 2007 - same breast. First dx was Stage II ER-, then ER+. After 2003 chemo, had Herceptin for one year. Since 2007 recurrence and chemo, I have been receiving Herceptin every four weeks via a port (7 1/2 years!). My hair is much thinner and little body for styling. I have to keep my nails short, always cracking and peeling. Nose is dry, progressively more tired. For the first time, my ejection fraction on ECHO was a little below average (will repeat in July). All that said, I view each day as a gift. I am able to lead a relatively normal life, play golf, garden, enjoy my grandkids, etc.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

Have been experiencing shortness of breath. Also been getting hot flashes that come with a prickling feeling all over my skin....as if things are sticking me all over. Very uncomfortable. As usual, my MO says this is not a se of herceptin, but I've already been through menopause and had hot flashes with that. But never had this awful prickly feeling before I went on herceptin.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

Ditto pricking feeling, cold shower helps

Left mast nov 2013, chemo TCH started dec 2013 thru April 2014 21 day cycle. chemo was Tch every 21 days tI'll April 2014, now with only herceptin every 21 days in the current mix no other meds. Before first chemo menstrals were clock perfect but last one went with hair 20 days After first chemo. Left idc stage 2 ER+ her2+++ one node pos.

Herceptin issues started after last chemo, which means some steroid or co-chemo medicine may be solution to solve herceptin issues. My next herceptin is Monday, I'll probably ask to skip it and ask for a break or I fear one more treatment and I'll be perm handicapped and bed riden or wheel chair and lose the two working fingers left (ring finger both hands) all the others got trigger finger, are stuck in bent configuration and forcing them straight is painful and may break them, ditto with toes. The fingers started two treatments ago, the feet, knees, toes, elbow started with the first solo herceptin, ditto with falling, stumbling, no longer being able to do math, bills, writing, and speaking now is stuttering and wrong words or just like a stroke. I was never sick before starting chemo, and rarely needed medical intervention except from extreme sport mishap which was rare. Now becoming a regular Emergency room visits from falling, hands dropping or slipping with the knife, or failing to hold something and it falling or hitting head, eye, etc. Fatigue is overwhelming but unable to sleep. Strangely I'll have one good day in between treatments where I can function normally and run non-stop and do weeks worth of chore catchup but I cannot turn it off, I just go go and then crash on couch for a few days. I stopped exercising and yoga, seemed the more I tried to defy and fight back the worse joint,tendon, etc issues got. Read a herceptin post where someone said to veg while on herceptin to avoid joint pain getting worse, and it that helped. Now tons of sweats, my body temp and blood pressure is all over the board, and if sun heat hits skin it feels like I rolled in pink insulation all over body. Neuropathy hit privates in addition to feet, hands. The doctor says to ride out until the scheduled completion date of dec 2014. But no confidence in med staff since they also sAid that dry eyes, and other typical chemo symptoms where not asssaociated with chemo and I should be working full-time. Found a survivors group After my last chemo and found out my issues were typical. A nurse in the survivor group suggested I ask my GP or cardiologist for clonidine HCL for the sever hot flushes that started Fter third chemo that the oncologist sAid was unrelated to chemo, after months of hell after one tiny pill it solved them, maybe needing one every other month. Oxycocone is the only relief I get from herceptin neuropathy, left over from mastectomy. I take a half one one or twice a week just to catch a break to keep going. Turning my wrist feels like electrocution. Having to pee at night every 30 minutes and having to crawl the first few yards until Tentons in ankle can move and handle weight. Bloody and running nose, loss of appetite first two weeks after a treatment. I eat on a schedule but always lose 10 pounds first four days of treatment, then gain it back by the time of next treatment. I lose time and confused, resulting in near,y burning house down at least once a month with the stove. I'll go into the kitchen to feed the dog at six, and the next thing half hour to four hours gone by and still in same spot in kitchen. When I walk and feeling well and stronge I'll ver off to the right and walk with a cane now to stab the ground with to stop the ver. At other times my legs just fold And just before hitting the ground recover. I'm sure the neighbors think I'm a drunk walking the streets. There are more herceptin issues, and yes I did report them to herceptin folks, Which was like trying to get though a brick wall, pretty sure they don't care. No clue how to contact FDA yet. So now trying to determine quality or quantity of life, leaning toward quality and stopping herceptin. Next post I'll use a real keyboard vs online text one fo improve quality.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

Regarding prior post ... I lost four pounds to get to 106 and negotiated a dose change based on current weight versus prior 110 weight and no longer need oxy or have bloody nose. I am able to get yoga back into play (classical stretch on Maryland Public TV) but feel years from doing any Jillian yoga. My hands still cannot use door knobs and such. Total loss of thumbs as of this post, but toes got relief. So feel like 98 rather than 120, that is welcomed improvement. GP put a wrist and forearm split on right arm and pain significantly was relieved at night. Got my eye on on my trail and speed bikes, soon hopefully I'll have the balance and hands to pedal the trails again.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

Cif, your side effects sound in the extreme! I hope you are insisting on better management, dosage regulation, treatment or whatever is indicated to offer relief. I had many of the se you mention but no where near the debilitating degree
I hope you get resolution
Keep the faith

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

You should be asleep. But your posts help so many including myself. Like me, a lot of folks read and not post, so imagine how many more you help than u r aware of. Thank you. Now, did I mention herceptin and insomnia ... Basically every side affect ha ha. Regarding better management, no clue how to do that since the docs will not read this site and believe everyone can work fulltime though chemo and besides hair loss only other symptoms are during injection and none afterward, and herceptin has no side affects. Basically they say i'm a wimp i try to explain i'v never gone to docs beforennthis and prefer not to now, and told them i never could do drugs because things like nyquil would kick my butt even in tiny doses. Except for asprin I'm only quilty of being hypersensitive to dosing, but i'm size of a flea and should be dosed based on sensitivity, not based on weight with street cloths and silicone. Ha, i gained weight day i got the new girls, can't believe they don't subtract that.

My guess is they plug in info into hospital program and robotically prescribe what computer burps out without factoring experience, and patient history and metabolism, etc. I got the dose change because I went from timid to a foot stomp raised public voice that silicone and a belt buckle should not be included to determine dose. Sort of funny because i stuttered the burst and most around the area knew me before that herceptin side affect started and first time in my life I was going to publicly strip to prove what my weight was and as I started to is when they agreed. I guess the quite mouse roared. Seriously though, a 130 pound person can probably have the mass to metabolize a 10-30 unit additional dosage than a 106 pound lean flea could. Common sense should be used, if person is becoming disabled and unable to walk, drive, etc then decrease the dose; instead it was recommended to invest in wheel chair. Yes, I cried because Coming from a doctor I interpret that to mean that is my destiny. I was told six rounds of chemo then I'd resume activity lifestyle without any change. If I knew otherwise I would have done labor intensive home repairs and a few bucket list things before starting the treatments and started a month later.
Hugs, and thank you

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

A few quotes came to mind as I read your post
"Speak up even if your voice shakes"
"If you're going through Hell, keep going"
And of course " keep the faith"!
Does your treatment center have any sort of patient advocate or oncology social worker who might work with you?
Mine had a pharmacist who prepared the infusions and was available Perhaps you could have a meeting with them to discuss side effects
As you have discovered, the squeaky wheel gets the attention
Thanks for the kind words. I'm just passing on what was given to me here
KTF

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

I don't know if it's Herceptin or not, but neuropathy, particularly in my right hand is worse. Of course, I have lymphedema in that arm, so that could be a contributing factor. Some of the symptoms mentioned - hot flashes, insomnia etc - were brought on in my case by the addition of Arimidex. I take it orally every day, and my new onc says I'll take it for years - assuming I live that long!

I have moved to E. Tennessee - did I already say that? All new doctors. So far I'm pleased for the most part, but my blood count has gone down and I"m getting an iron infusion with my next Herceptin. The nurse says it won't be what I've been taking for years because the insurance, which in my case is Medicare, will no longer pay for it unless the patient has kidney problems. I'm a bit nervous about starting a new drug, especially since the irons have a reputation of causing problems. I was taking Feraheme with no problems at all; I hate to give it up. If I can't take the new one, I wonder what I'll do.

One of my new doctors ordered an ultra sound of my thyroid and some blood work because of nodules that concerned him. I haven't heard anything, so I guess all was well.

I hope all of you are doing well and looking forward to fall. This will be my first "real" fall with changing leaves. South Louisiana, where I'm from, doesn't have much in the way of fall. It's usually just as hot as summer. But I miss it...

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

BonnieR, had treatment yesterday and addressed issues. Was told to contact Hopkins, will try that. Got dosed again based on actual weight, yay - hope that will continue to help improve things. Doc also said she would be game to try weekly vs 21 days since posts on this site said folks got symptom relief trying that. Got three good kicks from heart that stopped me in tracks, definitely got my attention, will be getting stress test on Wed. Amazing how in short few months can go from being an ox to having so many issues. Going to ask Hopkins about CP2, so holler if you know I should steer clear.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

Herceptin side effects: Hot flashes, dizziness, fatigue, muscle and joint pain, runny nose, bloody nose, thin hair, and forgetfulness. I was 41 when I started on it, and was in GREAT health before the cancer, so I know it is not "age" that caused the side effects.

Re: Please post your two cents on Herceptin "side effects" real or perceived!
 

Hi Bella.

Please read my signature so you can see that a 4th stage, HER2 positive, ER-/PR- lady can survive long into the future!

The symptoms you mention are what I experienced from Taxotere.

I spent 10 yrs on Herceptin without those symptoms, after the 8-9 mnths of Taxoterror I took.

However the T did kill the cancer. So we have a love/hate relationship.

I had a highly aggressive form of bc. Taxotere was the strongest weapon they had in their arsenal, my onc told me. It was the harder road, but I believe the right one.

I pray you find much healing.

Please check out my WHY I TAKE SUPPLEMENTS thread, and actually any and all of my thread.

Hugs,
Andi

Andrea Barnett Budin