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

[harrie]

Andi, am I the "maryanne" that you are addressing that question about the pagets or ibc to? If so, I don't know what pagets is or ibc so I can't answer your question. sorry.
I bet you were asking a different Maryanne.....
Happy holidays anyways....
Maryannne (Harrie)

[Kathy S in Tokyo]

Depletion of savings, divorce...Not having a good week thinking about how to care for 4 kids 14 and under and stay alive by contolling the cancer with Herceptin treatments but hubby says he's paid as much as he can and I should start being considerate of the family budget and that he'd be happy to move out if divorce might make the situation better. Hmmm, quit treatments for the privelege of staying with this gem...I don't think so.

Sigh

[Andrea Barnett Budin]

HARRIE/MARYANNE. You can tell I'm still on tx. I thought MAB was Madame Dubois who is Maryanne. It is embarrassing. I don't know MAB's name but she asked about Pagets. Dear Lord. Pictures definitely help. I know your face and your name(s) and your posts. HI!

KATHY, My heart feels wrenched by your news. Of course reach for Life! Your beauty of hubby infuriates me, so I can't imagine what his attitude must be doing to you. You deserve to be loved and cherished. Somehow you will find a way not to descend into anger and resentment over your whole situation, I pray. I will pray hard. You are so sweet and I enjoy your posts. 4 kids under 14 is more than enough, w/o the foolish man and w/o the foolish bc issue. You have a great deal on your plate. I know I sound out there, but please try to meditate. It offers great solace, a connectedness to your True Self and your divine Source. Stay grounded, sweet Kathy. Know that you are very much loved and loveable!! Stay close to us...
Andi

[Kathy S in Tokyo]

Thank you Andi for the comforting words. I'm actually a lot more calm that I thought I'd be about things and am researching options. I'll probably go cycling along a nearby river this morning to "reset" myself. It still looks like fall here in Tokyo.

[tousled1]

Kathy,

My heart goes out to you. It's a tough battle fighting breast cancer without adding all the other BS into the mix. Four children under the age of 14 - WOW! You have a full plate right now. Hang tough and do what is best in your heart of hearts. I'll keep you in my prayers.

[belle]

Hi Kathy,

It's just another hurdle to jump through. Everything will be fine. Kate and Andy are right - kids are your happiness. Hang on there and make it through. I'll be wishing it for you, too!

[myraazzopardi]

I have now been on 3 weekly herceptin for about 10 months. I must be lucky as I am not noticing any side effects still. Unless the cramp like pain I get in certain positions behind my treated breast could be. I get worried when it happens. My onc does not help. I have also a sore nipple which crusts and sometines discharges when crust bathed off. Onc want to give me a biopsy to see but its been like this for 7 months now and not sure if it can be due to radiotherapy which ended a year ago. Thank god for this site.

[Johnnag85]

I am stage 3 Her 2 Postive 3/Took Herceptin for 8 months out of 12 months scheduled. I took it ix per week, I was 39 yrs old. They said my age was the reason for 1x per wk, had a better response. During that time I was also taking Taxol 1x per wk for the 1st 3 months of Herceptin. I had to stop the Herceptin because it lowered my heart stengthfrom 78% to 45%. I stopped when it fell below 50%. Luckily within 2 wks of stopping my heart rebounded. I dont know what it is today-1 yr later. I also had 4 rounds of AC before the Taxol-every 2 wks. I had radiation treatments after the Taxol was completed-while I was on Herceptin. I also started 25mg of Tamoxifen after Taxol. Along with the Herceptin.
Small side effects which could be related to who knows!! were: Dry nose, nose bleeds, lightheaded, no energy, fatigue, weight gain, kicked into menopause, back aches, numbness in toes and fingers, hands and feet falling asleep constantly, change of vision-different every week for 3 months-eye doctor monitored it, chemo brain, hot flashes, no vocabulary, slurred speech, headaches. Man, is that it? I dont know, seems like most of them.
Today, 2 and 1/2 yrs after dignosis I am on Tamoxifen and I have a dozen spots on both lungs taht have stayed stable with no new growth in the last year. Yea!
Good luck to you all
Johnna

[MAB1943]

Hi Johanna,
well that about says it all. you hit about every side effect I have.
I wish you good luck and better health ahead in 2008.
Glad your lung spots are unchanged. So i guess it was worth it after all.
At times I wonder,LOL! I will be going off herceptin the end of March.
I am hoping that it worked, but at least I gave it my best.
Keep in touch,
Mary

[MAB1943]

I think it would be a good idea to have the biopsy. No sense in taking any chances.
Let the biopsy determine if it is f rom the radiation or herceptin. Which I don't believe it is, but the strange things in the treated breast are quite common.
Good luck and let me know the outcome.
Mary

[MAB1943]

Harrie/kathy I am MAB. I was told by one dr. that paget's is a invasive cancer of the nipple, with crusty red skin and discharge, but I didn't have any of that, but when th ey did the biop of the mastectomy it showed pagets invasive of the nipple.
then another dr said it wasn't cancer and relayed the same crusty,red discharging nipple. ???? Nobody seems to answer with any back up. I can't even find any info on the internet here.?? so, that was why I was asking, not that it matters anymore now. You know I had a biopsy of the nipple before I had the mastectomy and it didn't show the paget's disease, only the DSI, it didn't show that I had invasive cancer either.?? How can th is happen. Mary (MAB1943)

[debski]

I have been reading your posts with interest. I think I have the following side effects that are caused by herceptin but it's hard to be sure of anything at the moment.

• fatigue
• runny nose/blocked sinuses
• bleeding nose/sore
• fatigue
• cramps (think this is caused by tamoxifen but not sure)
• depression
• mood swings (quite violent actually)
• want to go to bed all the time
• difficulty in concentrating/my driving is shocking
• skin on fingers split at ends
• nails thin

Well I think that's about it- now what am I gonna do about my curly hair? Any ideas.

Love Debbie

[MAB1943]

Dear Debbie, I wish I had this thread when I went to my onc a few weeks ago.
Her nurses assistant told me none of the same side effects I have been experiencing were from the herceptin.???? Now you confirm what I have felt all these months.
I don't need the RN Assist to dismiss my symptoms because I have you people on this web site who are taking the drug and experiencing the same
things. Thank you so much. About your curly hair, I don't have an answer for that because mine came in gray and straight. Now the gray hair matches my deep creases in my lip and face area and just does wonders for making me feel like an old woman.
LOL!!!! Just what I need to boost my morale.

[Hazel Joyce]

Silly me. Edited once again to add: occasional nosebleeds, 2 sinus infections (never had either before H.) LVEF dropped to 51% at one point.

Side effects from Herceptin that I am experiencing are vaginal dryness and terrible muscle cramps in my fingers, toes, feet, calves, thighs and rib cage. The cramps seem to occur more frequently at night or in the evening. I don't know if these effects are due to the 3- week dosing schedule or just because I've been on it for a while. I've been using Astroglide for the vaginal dryness.

Edited to add: the muscle cramps are probably caused by something else. I've been off Taxol for 7 months and this started just recently. Who knows...

I'm regaining my health and recovering from chemo which ended in June 2007.

[Andrea Barnett Budin]

Hi Hazel!

I believe the sever muscle pains you are experiencing may come from the Taxol. I had the same from Taxotere (a cousin) and for many mnths after finishing T, yet continuing on Herceptin. Finally, I no longer have that terrible pain in my arms and legs. The neuropathy in my fingers and toes has gone.

I have been on H for over 9 yrs and have no side effects but for chronic fatigue, flagging red bld cell count. I hope your terrible cramps soon subside...

BE WELL, Hazel... As you can see from my signature, I am very lucky. Somehow, it can always be worse.
Andi

[DianaW]

I truly feel blessed to have found this website.... I am her2 positive and will be on for life (it will be a year in Feb that I started) I have been off navalbine for 5 months now and I am still fatigued.... my vision has deteriorated, and have bad sinus problems.... I am told that it can't be the herceptin that it doesn't have side-effects!! please write back if you are in similar situation as it confirms I'm not crazy....

My history: I was DCIS 9 years ago, had a full mastectamy, no chemo or radiation was recommended, 18 lymph nodes removed and clean. I was fine until a year ago Christmas I when was admitted to the hospital with fluid around my heart... when they drained it they found cancer cells. They diagnosed me with Stage IV metastatic, her2 positive cancer.

[ElaineM]

Hi Diana and whoever else is discussing this,
Yes. There can be side effects with Herceptin, but they may or may not be as intense or as interesting to doctors as the side effects of chemotherapy.
I am happy to hear the Herceptin manufacturer may be doing a study on this. In the meantime patients should be able to get a list from the Herceptin website. I think that might be www.herceptin.com.
Each person's body is different, so each person taking Herceptin may not be experiencing the same side effects as other people, but as patients speak up more and more the side effects may become more well known and accepted by doctors.
I get tired. Some of my other symptoms doctors have not been able to find a cause for may actually be Herceptin side effects. Who knows? Anything is possible.
Hang in there. Side effects may be unpleasant, but considering the advantages of Herceptin they may be something we have to learn to manage. At least we are alive and kicking. That is a blessing.
peace,
ElaineM

[DianaW]

Thank you Elaine.... I agree!! God bless, Diana
p.s. it's very,very cold here in Boston so I will dream of being in Hawaii

[ElaineM]

Hi,
I am wondering if rashes and sinus problems are side effects of Herceptin or Navelbine. I can live with rashes or sinus issues if I know the medicine is working well. I am just curious.
ElaineM

[dbronson1]

I have had a rash since week 22 on Herceptin. I also have a runny nose all the time. I have had other sometimes serious side effects from Herceptin also. I only have 10 weeks to go, and I can't wait to be off it. For the past two weeks straight, even the Decadron does NOT take away the itchy, hivey rash. I am up most nights (and some days) with cold chills, sweats, and diarrhea. I am not on anything else, except the Decadron, so I know it is the Herceptin. All my doctors say oh Herceptin is a piece of cake. I have felt worse on Herceptin than on any of my chemo!!! My onc. says I am one of a very few he has ever seen with these Herceptin problems. I have stayed on it despite all these problems, because all of these side effects are worth it if my cancer never comes back!! It has never affected my heart, my MUGA scans have been great so far. So as long as I can keep a normal weight, my onc. lets me stay on it.