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

[potra]

62yrs old, menopausia at 54, dx IDC april2011, lumpectomy July2011, er-/pr-, Her2+ sentinal nodes-, 8 cycles TAC/3WEEKS,
Herceptin/weekly. Dx bone mets Oct2011 and added Zometa to tx. After terminating chemo por febrile neutropenia, continued with herceptin +Zometa/3weeks up to now. New symptoms since finishing chemo-hot flashes, slow hair growth. Runny nose, crusty eyes, blurred vision in the afternoon, fatigue. I can't evaluate respiratory effects because I have COPD but I'm much more prone to bronchitis episodes since starting treatment-4 episodes in 10 months, 2 of them since off chemo and with white cells back to normal. Bloated stomach-I call it Herceptin tummy.

[Kroesen]

I have almost completed my first year of "Survival". Next week marks a year that I have had a mastectomy. For you ladies/gentlemen that are just starting the process, know that you will get through this. It will be day by day, step by step, minute by minute, and sometimes second by second, but you will survive.

I thought I was allergic to the Herceptin. My whole body was one big rash and was very painful. I went to a allergist and they put me on all kinds of allergy meds and a steroid. It turns out that I was allergic to the Heparin that they put in my port. If you have a rash, write down everything that you do. I'm told it is very rare to be allergic to Heparin, but I'm glad to have figured it out. I was determined to keep taking Herceptin.

So, as for side effects of Herceptin, I would say sore joints. This is nothing in comparison to everything else.

Good luck to all of you who are starting the process. You WILL get through this and be a stronger person when you're finished with treatments.

God is good-ALL the time.

[pmm10414]

Hot flashes were terrible. Within 10 minutes of starting they would start.

[Andrea Barnett Budin]

Itchy red rashy full of fire burning on my upper outer arms. Needs urgent immediate response!

Ice, water as hot as I can take it, camphor gel, Benedryl spray and Benedryl (2) nightly -- helps.

After 1 yr the red rash remains but the pain is gone.

[rhondalea]

Andi,

You might want to give calendula a whirl. IMO, it's a miracle.

Hyland's makes an ointment that's pretty disgusting (petroleum, lanolin and calendula) as well as a spray (glycerin, water and calendula). California Baby makes a cream that smells lovely, but is probably not so effective as the first two. I have not used Weleda, but it gets high marks from many.

During radiation, I used California Baby in the day time (so people wouldn't run from me holding their noses). At night, I slathered on the ointment (because my husband is mightily tolerant--well, either that or he's lost his sense of smell entirely). End result? No radiation dermatitis for me. Now, when I burn myself or come in contact with something itch-inducing or have any skin irritation at all, I apply the spray immediately. Bye-bye burn, so long itch, fare-thee-well red spots.

Oh, and it also works for sunburn.

[Andrea Barnett Budin]

Rhondalea, Hi.

I googled California Baby. It's for diaper rash. Dry skin.

What I had was rashy looking, not dry. On fire, burning and urgently knee-dropping itching.

I am glad this worked for you. Thrilled in fact. I thought radiologists gave out special creams for those special burns to the skin. Do they itch too?

I was lucky. Only mastectomy. No breast tissue, no radiation is what I was told. 2 lymph nodes affected (out of 21). 3 yrs later the bc that had a ticket to anywhere in my body landed in my liver. Just saying...

Andi

[kstrahm]

Herceptin has become a side effect nightmare for me after almost 7 years on it. I started it in April 2006 for stage IV with liver mets. It was great at first - just a headache on infusion day and tired that day over the years it has progressed into full blown neuropathy with burning, tingling, numbness in hands, feet, legs, arm, tongue and throat, frequently dropping things and losing my balance as well. It also causes me to be dizzy and have pressure in my head as well as extremely exhausting me. I also have what the doc calls flu like symptoms which is severe pain the day off and day after the treatment in my upper back and neck. Here recently I have almost felt like I was dying the evening of taking it I was so out of it and felt so like nothing I could even explain. The verdict of this since I am NED now and have been for 6 years we are going to stop Herceptin. It is so scary and is a gamble but my body is giving me no other option. I hope to be NED for a long time because I am not looking forward to going back on it anytime soon. I certainly think the Herceptin side effects are cumulative.

[frankp]

kstrahm--you might check your serum HER2. A very recent Danish article pretty much concludes that chances of progressing are slim if your serum HER2 is in the normal range. You can read more at www.hertestonline.com, the March blog.

[rondo]

I'm sorry you are having such severe symptoms but glad to hear about your NED status. I
Definitely experienced increasing fatigue from the Herceptin during the year I was on it as well as some other milder symptoms. It is interesting that you mention dizinness and loss of balance. I have been having the same issue and am in the midst of vestibular rehab therapy now since my symptoms, which were mild for several years, have progressed over the last 6 months. The onc and ENT that I have seenthink it's caused by the carboplatin but now I am wondering about the herceptin since from what I have read, carboplatin usually only causes hearing loss(which I don't have.) They are having some trouble getting my symptoms under control so I am going to another specialist soon. No one seems to think its a brain met. Has anyone else that had TCH (or not) had this issue?

[conomyself]

I've had:

2 x TCH
4 x TPH
2 x PH
2 x H
1 X PH

so far (P = Perjeta, H=Herceptin, C=Carboplatin, T=Taxotere).

My last infusion of Taxotere was 11/27/12.

Overall the herceptin has been fine for me.

I have minor issues, but I don't know if they are due to Herceptin or leftover from Taxotere:

Knees. When trying to get up from a crouching position it is difficult and painful.
Stiffness. I am quite stiff after sitting.
Nostrils. They are scabby and painful.
Diarrhea. On and off, not chronic. Never know what I'm going to get.
Fluid retention. It has improved, but my face still looks puffy to me.
Energy level. I can do about 50% of what I used to do before diagnosis.

Rachael

[Andrea Barnett Budin]

I found Taxotere side effects to be the worst. Even off Taxotere for years, I would occasionally get serious and deep muscle pain in arms and legs. My doc said I'm not the only patient reporting this yrs after.

Herceptin was tolerated fairly well. Low energy. B-12 sublingual. Phyto Formula for chronic fatigue recommended by nut onc (supplement guy).

Ayr gel in a tube for nose. I used to have to blow my nose for the first 1/2 hr I got up in the morning. And it was bloody.

Poopies/bathroom drama really bad. After all is said and done, I have created a FOOD TRIGGER list that I must stick by religiously. After 5 gastro guys and every med they could throw at me, 1 Wobenzyme 1/2 hr before meals plus LIQUID IMODIUM have proven to be fantastic. My chronic IBS since the first chemo is somewhat under control. (KY jelly for diaper rash works wonders when you've spent hrs on the toilette...)

I was on Herceptin for 10 yrs. Off for nearly 5!!!!!

So sorry to hear of those battling the side effects of whatever.

From the Taxotere I had severe neuropathy, fingers, soles of feet, toes. Burning pain. Dropping things. No headache. No dizziness. Well from the Roxicet yes.

My fav onc told me at the 5 yr mark on Herceptin, I could stop. I stayed on for another 5, cause I wasn't going to mess w/NED. It is very scary going off, but I celebrate each year, have the date of last infusion marked on my yearly calendar. It is my THIS IS MY NOW Day! Freedom. No more chemo rooms.

Still do the supplement thing twice daily (many many). Meditate. Talk to my body. HEALTHY AND WELL! It hears everything you think, say and whisper. And it follows your instructions! Honestly. State your Intent and your Expectation explicitly.

KNOW that the Universe is also listening to your thoughts and intentions. And it responds -- in kind. So I stay far from fear and worry, uncertainty and all negativity.

I focus on The Now. Not yesterday. Though it was all life-altering. I look to tomorrow with as much love as I can muster. I allow myself to be a vessel for Universal Love. Compassion. Kindness. Generosity of Spirit. Forgiveness. And GRATITUDE. Every day, several times a day, I look up and I say, THANK YOU FOR MY LIFE.

I visualize myself far far into the future. I breathe. In. And hold. And out. Slowly. Releasing all that is toxic on the exhalation.

This is the very best advice I can offer. I pray you all find joy and serenity, wellness and health.

With Love and Light,

These are my best suggestions.

Andi

[norkdo]

I finished my herceptin in August. Side effects: none. (slept heavily afterwards tho.)

[pibikay]

Hema is on a 3wwekly course after a break.This is her 3rd cycle.After the first 2 infusions diaorreah was there.But the main side effect is extreme tiredness

[linn65]

Feet, knees, hips, and hand pain. It moves around in my body they don't usually all ache at once. Fatigue. I had cold sore inside of nose. Emotional. At times lack of concentration/focus and Sometimes hands ache and are tingly. Night sweats and chilling. All these start several days after I receive herceptin. Then I almost forget I had any side effects because I feel fine for several days before then it is time for another one.

It will be interesting to see how much the tamox plays into the side effects.

[YNieves]

I am on Herceptin and Tykerb. I first took Herceptin I. 2009. I had an an allergic reaction 15 minutes into the infusion. My chest started to tighten and my breathing got increasingly labored. My BP sky rocketed. I had to go to the ER for prednisone inhalation treatment. Luckily that cleared it up, the net step would have been an epi needle! I went o an allergist and was desensitized toHerceptin so I could accept it. I took it for 1 year. 3 months after I was off my cancer returned to chest wall. ( personally I think it was always there.). I then went on Xeloda and Tykerb (1250mg. 5 pills). Did that for for twelve weeks then stayed in Tykerb only. Pet scan should cancer cells in axilla lymph node. Went back on Herceptin in 2011 along with Tykerb. I reduced the Tykerb to 4 pills about a year ago because of the increasing neuropathy in hands and feet. I have experienced the crusty blood nose in the mornings, numbness in toes and middle of feet, painful achy knees, photo sensitivity and rash like swelling around ankles. Never goes away. I was just given a 10 day break from the Tykerb but have decided to get off it. Onc. Wanted me to reduce to three pills daily but admitted he has no one on 3 pills and does not know if it will be effective. I feel that the Herceptin on its own is good enough. I have had clear pets cans for over a year and a half. My feet are so painful and the numbness is increasing. My hands started to get shooting pains and electrical shocks? I am Her 2 ++ and ER and PR neg. Had a mastectomy in 2009 and then cancer returned to chest wall and lymphatic system after chemos, Herceptin etc. I am told I will have to stay on Herceptin for life. I get infusions every three weeks. My faith is strong. God will heal me!

[Nancy L]

I never had a reaction to Herceptin but I did to Tykerb. Dr. Slamon was directing my treatment at that time. I broke out in hives all over my body after taking 1000 mg (4 pills) Tykerb for four days. Dr. Slamon immediately dropped the dosage to 750 mg (3 pills) Tykerb at bedtime and Herceptin every three weeks. I was on this from 2/2009-6/2012 until the cancer came back a second time. Now I am on Kadcyla which is a very difficult drug in my opinion.

[KDR]

Nancy, wondering...did you get the information needed in the email?
Karen

[Nancy L]

Thanks Karen--just sent you a private message.

[KDR]

Ah, yes, I see we are on the same page. When the body speaks, we must listen.

Hope you are well, Nancy.

Karen

[Raz]

I was Stage 1 ER+PR+ HER+++,Lumpectomy left, 6 rounds of Chemo and 4 weeks daily rads. Still on Herceptin through November 2013 every three weeks.
I have been mentioning my joint pain but onc says not due to Herceptin.
I have to disagree. I hurt every morning and I walk really stiff. It takes about 2 hours to feel normal.
The side effects are very real. My onc thinks it might still be residual from Taxotere.
Either way it sucks.