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

[dchips1]

I was dx stafe 4 IDC 1/06 now it is 1/07 and I am NED!!! Been that way since August. Liver and bone mets are gone!! Praise God and good drugs. I am a very active person, I have a blended family of 5 teens and a 6 yr old and I take care of special needs children, and work part time for the school as a nurse.
Timeline:
2/06 Mastectomy 3/9 nodes pos er/pr neg her2 pos
2/06 port placed
3/06 Taxol, carboplatnium, herceptin weekly x 3 then herceptin only for 6 months Zometa monthly (1rst two doses very sick 102 fever etc)
took neupogen, neumega, arasnep PRN
Good case of allergic reaction to carbo after the 16th dose
still on weekly herceptin
Good case of chemo brain!! Hot flashes and fatigue pretty much gone now
Brain still is not where it should be, Is this herceptin or chemo? Good question.
Finger nails brittle, peel MUGA at 62%-72%. I am going to get herceptin past a year, I feel like it has been the "juice of life" for me. I am NED and would like to stay that way.
I am going to continue weekly and I take coq10 and flax fish and a multivitamin.
My message to others with stage 4 is too never give up, be your own advocate!!! Darita

[Debra]

I have had 40 Herceptin infusions so far. I do them weekly. My biggest changes I notice and it started after Herceptin is the memory loss and how much more difficult it is to concentrate. It is a little scary at times. There are times I "question" if I called someone by the right name when it is someone I have known for years. I am also on tamoxifen but was not on that at the time I noticed these changes; just taxol and Herceptin. Other then that, some weight gain and a few aches and pains with the runny nose which, as many mentioned in this thread, crusts over at night.

[rinaina]

don't you hate it when a doctor or nurse makes you feel like your complaints of side effects are not valid just because they never heard of them? i am convinced there are things we just don't know yet about some of the side effects of herceptin or any newish drug because they haven't been around long enough to discover everything there is to know about them. no medical professional should poo poo any complaint we have about a possible side effect. it enrages me but since getting cancer i do not let it get the best of me. i simply tell the doc or nurse, "i know what i am feeling and if it isn't from the drug then what is it from? if they don't have an answer and it isn't listed as a known side effect, that doesn't necessarily mean it isn't from it. medical science doesn't know everything yet and never will. things change to quickly. that is my 2 cents.

[Emelie]

Lani,
Started Herceptin 1/10/07 as AC was not shrinking tomur. First round was OK. Second round with Taxotere had severe rib pain, hurt to breath and headaches.
Had 3rd dose yesterday and had headache waking up. I started with hot flashes, night sweats, insomnia when I started AC, so can not say that Herceptin is culprit, but none of these side effects have gotten better.
Let me know if I can help with responses. On leave from work right now and glad to help.
Emelie

[darra]

Hi
I am a sometime reader, first time poster. I finished my year Herceptin Jan. 8 and thankfully I can't say I experienced any horrible side effects. I definitely feel that my vision is worsening, I can be forgetful and am achy and stiff quite a bit. Ofh yeah, my previous long and strong fingernails are ridged and tear easily.

My question though is to those who have been off Herceptin for sometime....do your side effects go away as the drug wears off or are these permanent? All in all I am so thankful for this drug that will hopefully mean I never have to deal with BC again.
Thanks to all of you for your insight and wisdom, you have certainly helped me through this nightmare.
Darra
dx 10/05
t=1.2 cm, 2/12 ln +
her2 +
12/05-04/06 4AC + 12 T+H
05/06 35 rads
But I am so much more than my diagnosis!!!
Glad to be getting my life back!!!!

[Andi]

I had crusty nose, achy ankles when I first got up from laying down and the thin ridged nails. I took my last herceptin (my 1 year) September 13th. The nose cleared up and my aches went away, but my nails continue to be a problem. Due to a recurrence, I started herceptin again Jan 4 and the achy ankles are starting to come back, my nose isn't too bad yet.

[Susan McQ]

I was stage 2 er/pr neg and her2 +++. I did neoadjuvant chemo 4 AC's every 3 weeks, then 12 weekly Taxol + Herceptin. Completed Taxol in August of '06. I am continuing weekly herceptin, for a total of 1 year, just completed #33. All of my Muga scans have been great. I briefly stopped herceptin for 3 weeks after I had my lumpectomy in mid August.

Minimal side effects - dry skin - cracks on fingers, some vision changes. I don't have any other side that can't also be contributed to chemo.

Susan

[pennyvphoto]

After starting herceptin I noticed very severe joint pain around my left hip,it was so painful I found it hard to sit or sleep..has anyone got any recommendations for pain ,can it be cured by exercise,or by exercising whilst on pain relief will I be making it a lot worse.Penny

[tousled1]

Penny,

I'm still on Herceptin and since I started Herceptin I have been plaqued with severe joint/bone pain - especially in the hip area. My last three treatments I had them reconstitute the Herceptin with saline water. What a difference - no more pain! I get my Herceptin every three weeks. You may want to ask your oncologist about this.

[pennyvphoto]

Kate

thanks for your reply,as far as I can gather they already use saline to reconstitute the herceptin - it would be great to find out what is happening with the joint/muscles,the ligaments seem to be slipping and unable to support the sacro iliac joint,causing instability and thus pain-will attend the osteopath clinic tomorrow for acupuncture which gives temporary relief.

[tousled1]

Penny,

Here is how Herceptin is usually reconstituted.

HERCEPTIN is a sterile, white to pale yellow, preservative-free lyophilized powder for intravenous (IV) administration. The nominal content of each HERCEPTIN vial is 440 mg Trastuzumab, 400 mg ,-trehalose dihydrate, 9.9 mg L-histidine HCl, 6.4 mg L-histidine, and 1.8 mg polysorbate 20, USP. Reconstitution with 20 mL of the supplied Bacteriostatic Water for Injection (BWFI), USP, containing 1.1% benzyl alcohol as a preservative, yields a multi-dose solution containing 21 mg/mL Trastuzumab, at a pH of approximately 6.

I don't know what it is, but I can tell you that since I'm having them reconstitute it with saline water only my bone/joint pain has diminished.

[tousled1]

With so many new members, I thought I'd bring this discussion up to the front again. Perhaps it can help the newcomers

[betlen5]

Hi, I am going through my 4th reacurrance and was on taxol/herceptin for 3 months and herceptin alone for 9 months and the cancer has returned and waiting on diagnosis for what to do next. Has anyone here had a reacurrance while on herceptin?

Thanks, Betty
New to this site

[atdec05]

Hi,

This is a link to a news article that explains why some women don't respond to Herceptin alone, and what treatment seems to work. It sounds like it's only available now in clinical trials.

http://www.medicalnewstoday.com/medi...p?newsid=40964
- Anna

[Tonya]

I was diagnosed 9-02 with BC stage 1. Did 6 rounds of chemo, no rad. clear scans untill 10-06 with mets to the liver Her2 positive. I have had 14 rounds of Herceptin every week with Taxotere on 3 off 1. I have had the bleeding, runny ,congested, swollen nasal passage ways. The muscle around my eyes constantly quivers and twitches (very annoying). Fatigue is mainly noticable 3 out of 7 days. Memory and putting sentences together seems to be getting worse. Weight gain is about 10 pounds. I have some bloating and fluid retention by the end of the day.I have lesions on my tongue, mouth is kind of sore all over. I have back pain in the small and left side of my back. Hot flashes are really bad at nite. Some weakness in legs but I am still working and living life to the fullest. Thanks for all the info its nice to know you are not the only one having these problems. Tonya

[Tigerlily]

Hi from Australia. My name is Kim.
This support group is a godsend. I have a lot of side effects I feel my onc. brushed off - esp diminshed concentration, crusty nose, nails and hair affects, breathyness, hip pain, nech pain and tiredness. He feels my immune system is just reacting. Nothing more scary could be under the surface to due the how good herceptin is for my situation. You are encouraged to report aches and pains - then made to feel you're a nut for thinking somehting might be stirring below.

I currently on Herceptin every 3 weeks. Have done so for 5 months. Previously I had AC+ taxetere every 3 weeks for 4 rounds and Taxol every 2 weeks by itself for four rounds. Plus 7 weeks of radiation. My start to treatment was a mastcetomy in Dec 2005.

So wonderful to have contact with sisters in similiar situations and taking control of their dis-ease. It can be very isolating in the non BC affected world.

Thank you and regards Kim

Stage IIIa 4 tumors - grade 3 11/24 nodes Her2 3+

I have a memory of doing this, but don't see my response, so perhaps not. No doubt, one of herceptin's side effects. In order of severity:

Runny, crusty nose (constant);

Dry cough (gets better at times but continuous);

Difficulty breathing at times, particularly first few days after an infusion;

Vision problems (difficult to focus in mornings; takes about 15 minutes of rubbing eyes before I can read newspaper; then blurry vision for rest of day);

Weight gain (15 pounds since diagnosis; I've been on a strict diet for the last month or so and have not lost a single pound);

Swelling in feet and ankles (some days worse than others);

Nails breaking, with ridges (getting worse with each infusion); as a side note, my nails have always grown very quickly, to my annoyance; not any more;

Hair growing slowly (thick, but very very short). Stopped chemo at end of October; it is currently about one inch to one and a half inchs in length;

Memory, word use, ability to spell are all impacted. I'm a professional writer, previously with an excellent memory. When I now review emails, I find words that have no relationship to what I thought I had written; often can't even use a dictionary to correctly spell a word, as I can't even do an approximation;

Last MUGA scan (currently six months on herceptin) indicated that I now have hypokinesis of right ventricle.

[betlen5]

I can relate with Grace on the following:

I have a memory of doing this, but don't see my response, so perhaps not. No doubt, one of herceptin's side effects. In order of severity:
Runny, crusty nose (constant);
Dry cough (gets better at times but continuous);
Difficulty breathing at times, particularly first few days after an infusion;
Vision problems (difficult to focus in mornings; takes about 15 minutes of rubbing eyes before I can read newspaper; then blurry vision for rest of day); Memory, word use, ability to spell are all impacted.

I also had and still have even after being off Herceptin for 5 months; lower back problems, hearing loss, sharp pains in my ear drums and eye areas. I stay tired a lot.

Betty

[gin-tx]

This is my second episode of BC, first in 1995, clean and nothing showed on mammograms until I developed a different type of problem in April 2006. Went to breast surgeon who did biopsy, very surprised it was malignant. Saw a couple of onc who wanted to do aggressive chemo, was not happy with their treatment suggested. Had a bone scan and something showed on the scan, MRI revealed Stage IV metastatic cancer of the spine, so everything changed as far as treatment plan. Went to third oncologist and am so happy where I am. He recommended seeing the same radiation oncologist immediately who started treatments on my spine. Then had port installed and have had Herceptin and Aredia every 3 weeks since end of June 2006. Will probably continue with this regimen for some time. Have had more trouble lately with Aredia. I've started having chills from Aredia so they give premeds right away (benadryl and tylenol). I am on a multitude of other medications for blood pressure, acid reflux, but have noticed:
1. Significant change in vision, finally went to new opthamologist and got new RX for glasses, made huge difference.
2. Have had some bleeding from nose, rather heavy one day this week, did not mention to onc.
3. Have trouble sleeping, have tried 3 different sleeping pills, one did not work, 2nd pretty successful, third a maybe.
4. For the back pain from the tumor that is still there, radiation reduced some but it will probably never go away, the onc wanted me to try Vicodin, I fought it for months, tried it last night with 1/2 pill, did not help pain, could not sleep, and was dizzy and had headache until noon today. Will call dr on Mon.
5. No problems with fingernails, have pain in feet and they're icy cold at night, nothing new. Had that before.
6, No problems with strange tastes during or after treatment, but cannot eat during treatment. Thought of food makes me sick. Some people bring in burgers, etc. Smell really bothers me.
7. I have started to lose weight, weight stayed same until about 6 weeks ago, now I've lost appetite, can't eat much, and am losing weight.
Think that's about all. Keep in touch and let me know how you are progressing with your symptons.
hugs,
ginkott1@aol.com

[nitewind]

I've been on herceptin alone for three monthes. I finished all the chemo and I'm currently doing radiation. I'll be doing the herceptin for another seven monthes. Biggest change for me is my vision. I have a very hard time focusing, sometimes things go out of focus all at once. (Not fun when you're driving, I've had to pull of the road a lot, now I'm afraid to drive). Saw an eye specialist and he says I have dry macular degeneration, there's nothing they can do for it. I guess it will steadily get worse.

Also, lately, I have had some bowel problems, the dietician put me on a low fiber diet to help control it but so far, no luck! I still consider myself lucky if the herceptin is working, but how do we know for sure if it is? I ask my onc all the time "how am I doing"? He says you're doing well. Who knows?
Hugs to all
Susan