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

[BonnieR]

MAB, I have neuropathy from something I'm taking (THC). It is intermittent. Worse right after the infusion. I take 10 Gm three times a day of Glutamine. You mix the powder with juice or what have you.....
Seems to help.

[Andrea Barnett Budin]

Jamie, Any questions you have shoot them over to me, as the poster child for Vit H, I have accumulated a lot of knowledge, hanging out in chemo rooms for the last 12 yrs.

I grew up in Rockville Centre. Got married, lived in Manhattan (22nd & 2nd), then an apartment in Lynbook, till we could afford (or stretch to afford a house). Had to go way out to Dix Hills to achieve that. Lived there 29 yrs raising my babes and my Silky Terriers. Now have 2 Maltese bros that we rescued 4 yrs ago.

Moved to Manhasset as I was initially dx in '95. That was interesting. Then moved full time to our part time town Boca. Moved from NY and from southern Boca large apartment to northern Boca house -- so I could take all my *stuff*. That move was just after finishing 9 mnths of Taxotere. That was impossible. It's amazing what you can do when you have to. And here I be. Or, as Flori, morning glory, says -- HERE AM I!

With loving energy going out to my Sisters and Bros... Andi

[myraazzopardi]

Hello girls. Changed hospital and have a really unsympathetic onc here Spain.
I sort of stated that prognosis for Her2 positive was not good. His answer yes that’s why we are giving you herceptin. I then asked what when the herceptin treatment is finishes. His answer “ Would have been better if you were node positive as we would have given you a tablet for five years” Anyone know what tablet and after all is it true that I am worse of being node negative. Second question. Does anyone else have discomfort with the operated breast? It’s now nearly a year and a half and I am sometimes still supporting my breast with my hands. My nipple area very sore to the touch and I am still wearing a constraint on my car seat belt so that it does not touch my breast at all.
Hate being a cry baby but hope someone can answer my questions. Love and hugs to all my hamster sisters.

[tousled1]

The tablet or pill he was talking about was Tamoxifan which has nothing at all to do with node negative or positive. It has to do with whether you are estrogen/progesterone postive. I think you need to get a copy of your pathology report.

[myraazzopardi]

Hello Tousled. Thank you for replying. My report is in Spanish and though I speak the language not I think for some medical terms. I am her2 positive I CDI (carcinoma ductual filtranete. 1.5cm. with 10% intraductal Grade 3 with what seems to be hormonal receptors negative B2 3+ Oh dear I really need to see if I can get this all English. All my best wishes. Myra.

[BonnieR]

yes, it sounds like he was referring to "hormone" positive, not node. I know you said you speak Spanish but are you and the onc speaking the same language? I mean that in a couple of ways really. Sometimes I dont feel that my doc and I are speaking the same English! I dont always understand what she has told me. That is why I am sure to write my questions and her answers to be able to review them later. And ask for clarification. My husband has been with me during appts and he will hear things very differently than I did. And he is usually right. Anxiety can cloud our comprehension.
And get that report translated into English. Or at least have it explained to you...
Keep the faith,
Bonnie

[myraazzopardi]

Hello Bonnie. Than you for replying to my question especially as you are so recently diagnosed and we all know what we go through in the first few months. You are totally correct about the language. I will check out my pathology report. I wish you, your dear husband and all you family all the love and care in the world. Myra.

[kat in the delta]

I have always heard of finding the" NEW ME" after treatments and have discovered that the NEW ME IS really the "OLDer ME"-with all these damages from the chemos, rads,possibly surgery, and HERCEPTIN, too.
I am Still in PAIN..., and the ONCS will not believe me until they SEE a Recurrence.. I wish I could give them some Adrimy/Cytox, then 12 doses of Taxol or enough so they couldn't feel their fingers or toes, then add some rads. during the same time, and finally top it off with that Final Year of "Herceptin " . None of the ONS (I HAVE BEEN TO) will talk about the long-lasting side effects of all these combined treatments . Then, it is too late.--- a year, then another year or so may pass by and you still feel like s- - t !!!--still in PAIN and maybe some neuropathy--even neuropathy never considered as such--like not being able to let go of Things in your left or right hand....probably more...+ if you have had surgery adn the removal of 1 or 2 breasts--and the Emotional IMPACT IT CAN HAVE ON A WOMAN !!
Yeah, they can rid you of the cancer and some are PROUD as roosters(if a man Onc.) , but WHAT nobody tells you is that all of these chemos., rads, and surgery-....Can and wWILL usually cause a lot more Devestion to your body, than the Cancer itself !!
But WHO WILL TELL YOU THIS WHEN YOU BEGIN ?? Not the Oncs, they need some $$$$$ and then they tell you when all has been done and there is no evidence of disease :
that you do NOT have Cancer ..anymore..!! Voila --get in the kitchen and start cleaning(family thinks). The ONCS are so Proud of the fact that , if you are so lucky, THEY HAVE GOTTEN RID of your cancer..-for the time being at least--..and now YOU ,"ALONE" , can now try to COPE with any and all thePAIN and Forgetfulness and Neuropathy, and any HEART DAMAGE-causing poor circulation and swelling in your feet and ankles,etc..and causing poor circulation if you see those Brown spots on your ankles,too.
ONCS, seem to fail in informing you about all of THIS when YOU 1st begin your first and 2nd yr of treatment.

Have any of you had Oncs that DID talk about this at first or at all ?? I'd like to know.
RSVP ----- kat in the delta

[Kathy S in Tokyo]

Hi Kat,

My newest oncologist always discusses the treatments and lets me know how awful things could be so I can decide which is worse, the cancer of the the degeneration due to the drugs. We carefully watch and decide when to kick in with the heavy artillery (20 Taxol treatments now because I needed to shrink the cancer in my lungs enough to breath a little last June) and when to wait and watch the cancer which will never go away while maintaining the absence of its growth with weekly Herceptin forever or until my heart protests even slightly. He warned that the first Herceptin treatment might cause a severe reaction, even death, and that if I coughed even a little during the first I.V. I'd have to stay at the hospital overnight or for a few days. I had to mentally confirm the status of my underwear before signing the release for that treatment, just in case I ended up in the emergency room. He asks at every visit about neuropathy (here the big deal is not being able to keep one's slippers on dur to numb toes, so culturally oriented to Japan!). I suppose I'd feel differently if I knew I'd ever be NED, but it seems that the expectations for stage IV are that I can probably have a nice long life by living with cancer and striving for "stable." I appreciate the onc.'s concern for balancing treatments with quality of life at this point. It sure would be nice to have a day or two when I forget to even think about cancer though.

[Connie Jean]

I was on herceptin for almost 2 years, every 3 weeks. I began taking it with Gemzar and Taxotere right after my mastectomy. I gained 10 lbs as my appetite increased. I deveoped a mass in sinus area (not cancerous) which gives me problems several times a year and I have off and on positional vertigo. My nails are soft and thin and my hair which used to be thick and bushy is thin and straight.
But I love herceptin for keeping me NED and these side effects were very tolerable.
I am now on Tykerb (2 months) and still NED. Praise God! Life is good.
Connie

[harrie]

Hello Kat S in Tokyo,
Before herceptin I was getting a little leary because I was reading about all the side effects many were getting. So I opened up a thread asking who was out there that have been on herceptin and got little if any side effects and many responded that they did in fact got minimal effects. I have been on herception since Feb this yr and so far (knock on wood) I have not noticed any side effects. Also, during treatments, from day one, I have been able to wear any type of shoe that I wanted. Neuopathy has never been an issue with me.
Good luck, hope all goes as well with you as is with me.
Maryanne

[kat in the delta]

I got neuropathy from the taxanes..I took Taxol..some take taxatere...(sorry about the spelling--in a hurry)..
The new thing is just going for a
Targeted treatment that fits You..!!!!!.. Now, some people are not getting the old adriamycin and cytoxin... nor Taxol or Taxatere... Only the herceptin... or the Tykerb.
The smaller number and duration of chemo. drugs, etc... you get seems to be associated with the # of side affects one gets from their treatments. Less chemos and duration of them = less side affects you wind up with.... --This is my personal opinion.....
I got it all !!!! After finishing all + surgery at first and rads,too, I was in Bad Shape-- but it has shown up WORSE after I had finished all for a year!!! .OOoo.and I forgot the Zometa ..the Onc gave me every 2 mos. for Osteopenia..which I stopped...after hearing the
Teleconf. on Bone Health from Cancercare or lbbc.org or y-me.org--think it was from cancercare.org... Listen to some of the past and future teleconferences that the MD Anderson and other Professionals. It is excellant for bone METs...but for what I have..only 1-2x per yr is recommended....
. --I have LEARNED a lot from some of the TEleconferences......... Keep in touch.
Hey and I have talked to gals in Stage 4 who are going on vacations to Fla, etc and who have had S.4 for 10 yrs+++ ...............kat int he delta.

[dhealey]

kat in dthe delta, I have a woman oncologist by my choice. I am Stage IIA, she told me right up front that my breast cancer would most likely come back at sometime and I would never be "cured", since I was her2pos. Says we have to treat it like a chronic disease. She has always been up front about the side effects. Is particularly watchful of my heart as I was on adramycin/cytoxin first and now herceptin. I have gotten alot of joint pain from the arimidex which is bad for me as I am very active. Walk alot. We have changed this to aromasin but the joint pain is back. I have a hard time defining the new me, but it is a work in progress. I have never felt embarrassed because I have mastctomy scars and I don't feel any less attractive, after all we have the right to chose whether or not we want a particular treatment. For now I chose to live each and every day.

[misskuwait]

Thanks for posting the article on the board. I really agree that the drug companies do not follow up after the drug has been marketed. My onc never asks searching questions its as if they dont want to know the side effects.
I am thankful of course for the Herceptin but my main side effect has been total back pain since one third of the way through the yearly course. I still have it pretty bad and no one can tell me if it is due to the herceptin or a combination of it and Tomaxifen. I often wonder will I have it now for the rest of my life?
Its great we have this board to post our thoughts on. Is there anyone out there with a similar story to tell?

[sandy truett]

stage 2+, her2neu+, 2nodes+, radical mastectomy, AC/taxol Herceptin 5/05-5/06 weekly. I actually felt well during treatment. I do have more floaters in my right eye but that occured after my first AC. I did get bad upper teeth pain in the 11th month of Herceptin. Went to my dentist who couldn't find anything wrong and then to my doctor who sceduled a scan thinking maybe sinus but couldn't find anything wrong either. Teeth pain went away one month after stopping Herceptin.

[Paris]

Hi DHealey-I'm curious why your onc. said you'd never be cured since you were HER2+. While I know in reality breast cancer can't be completely cured why was the HER2 such a negative? On the one hand HER2 has more aggressive characteristics but you hear people referring to herceptin as the "magic bullet". I am er/pr- and I've actually had people tell me that I should feel happy I don't have to do hormone therapy or worry about my ovaries.

Jamie

[Brenda_D]

And my Onc said "we are going for the cure", even though I have been staged at IV and the original pet scan showed bone mets. Later bone scan says NED, so that leaves me confused as to whether they were really there or not.

But, I think it depends on how your Onc views treatment and how your mental outlook can affect your overall health.
My Onc said 10 yrs ago, I wouldn't have had much of a chance, but now we have Herceptin and later Tykerb.

[dhealey]

Paris, I think my onc says I will never be cured and will have to treat this as a chronic disease for several reasons. I have tested positive for the gene, my tumor was large and grew in a short period of time. Not there in July discovered large lump in Oct., when you are herceptin positive the breast cancer is aggressive. Herceptin in some women can stop working at some point. I am Er/Pr positive and have tried two different hormone therapies both of which have caused me some side effects, only one more to try. It is not that she is giving me a death sentence, just bein up front that it will return at some point and we treat it again and again. I rather like the fact that she is up front about this. My mother's bc was same as mine only she was 58 when she was diagnosised (I was 52) she lasted 8 years, 5 years with no recurrence, then it came back with a vengence. I have done a lot of research on this and there really is no cure. They can keep us in remission for a long time though, and keep treating it with more effective drugs, but like diabetes it is a chronic disease. Many women who are stage IV go in and out of remission and can live for a long time if recurrence is caught early enough. I hope this answered your question

[gin-tx]

I do have some pain in back, worse sometimes than others, but I don't have the extreme side effects that you seem to be getting from treatment. Wish I had a suggestion, I did use pain patches given to me by a pain mgt dr which helped tremendously. I have more left to use when I need them. Don't have a lot of pain in feet, some, none in hands. Just keep asking what they can do for you.

ginkott1@aol.com

[tfouts]

Everything you state as your symptoms are what I am experiencing! My doctor keeps telling me that Herceptin really shouldn't cause these problems. But I'm telling ya, I'm not going crazy! I'm 43, and I feel really old! I only have two more treatments and am hoping that these symptoms will get better. I do want to add one more symptom though: I still have extreme vaginal dryness which has continued after my four AC and 4 Taxol treatments. My doctor said he hopes that will get better after I have completed my Herceptin treatments. My husband really hopes so. I haven't seen anybody address this issue here yet. Has anybody else experienced this too?