Please post your two cents on Herceptin "side effects" real or perceived! - Page 3

lucky4x · 09-30-2006, 07:50 AM

Oops... ps...

The runny nose is gone too! It was also from the Decadron ( steroids).
The blurry vision started with 1st rounds of chemo way back in 2000... I think for me its just old age (49).

lucky4x · 09-30-2006, 07:52 AM

Sooooooooo sorry... one more PS............

Herceptin treatments... have been on straight Herceptin since Jan 2006. I dont ever want to go off it, heart is good ... AND LUNGS ARE CLEAR!!

Yorkiegirl · 09-30-2006, 11:55 AM

LuckyX you wrote<<Those of you on straight Herceptin might want to ask your chemo nurses or onc. about giving up the steroids... just try it.<<<

Never once did I ever have any steriods while on Herceptin. This is one drug they say doesn't need a steriod.

lucky4x · 09-30-2006, 01:50 PM

Hi.

I was told at my clinic that its "routine" to give steroids before/during the Herceptin... but that might be just here in Canada? I am not sure... but would be interested to find out because you are soooo right... you don't need it with Herceptin.

Thanks for responding.

Lucky

tousled1 · 09-30-2006, 04:34 PM

Vicki,

I am on straight Herceptin -- no steroids -- no nothing except Herceptin. Only time I had steroids was as a pre-med with the Taxatore.

Carina · 10-01-2006, 01:35 PM

I went to see an allergist who specializes in desensitization to get people through chemo. He had not seen an herceptin allergy before but had heard of someone at Harvard who might have had some experience. Roche, the distributor for herceptin in Canada, have also shared some info. with my oncologist (2 cases) and hopefully this will give some insight into a strategy to be able to put me back on herceptin. So far lapatanib doesn't appear to be an option, even on compassionate grounds.

It is now over three weeks since Taxol and I haven't had herceptin since July 28th and I am still reacting. I was in Emergency last Friday in order to get the reaction under control. I am now on prednisone and benadry every 4 hours. I want to get off the prednisone as soon as possible but when I stopped taking it (after 5 days) the reaction came back by the 3rd day. I was really hoping that things would be a bit easier during the break between chemotherapy and radiation. Sigh...

Walked with my family and friends in a fundraiser for breast cancer reseach today. It was really good to be part of something positive and hopeful.

dawbs · 10-01-2006, 07:48 PM

I feel so lucky reading of everyone else's problems. I've only had 4 Herceptin/Taxol combos so far, but I am feeling better each week and have virtually no side effects. (Slightly bloody nose and occasional pimples only.)

However I did have quite a weird infusion reaction with the first Herceptin. About 45 minutes into it I started to feel cold and within 5 minutes was shivering. This escalated such that I was trembling all over, even my teeth, so I couldn't even talk without biting my tongue. It was rather like a grand mal seixure, except I was conscious and laughing...it was so weird. I also had aching up and down my spine, legs and into my neck and the pain was worst at the site of previously irradiated spine mets. My oxygen sats, blood pressure and pulse all starting fluctuating, but I had no trouble with breathing or temperature, and I otherwise felt fine.

My oncologist said this was a "tumour lysis" response, not an allergic reaction, and that this reaction can occur rarely in people with lung mets (which I also have), apparently due to cytokine release. The symtpoms settled over a period of 45 minutes or so, after being given dexamethasone and promethazine, and I was able to finish the infusion (only about 50 mls anyway). The next two times I had premeds first and no reaction, and last time had no premeds and still no problems.

I felt it was a blessing. I had a mental image of tumour cells being fried and zapped and felt so priviledged to be such a good responder.

Has anyone else ever heard of this reaction?

Vicki

Bev · 10-01-2006, 08:24 PM

Vikkis mom,

There is the FinnHer(sp?) study. They did it for 9 weeks with good results. Either search on this site or the www for more info. Best of luck to your daughter. BB

dskdrive · 10-09-2006, 12:44 PM

I Had The Same Reaction. I Am Stage 2 With No Mets That I Know Of. They Gave Me Benedryl And Tylenol And I Settled Down And Was Able To Finish The Infusion. I Have Now Finished One Year Of Herceptin And Have Been Cancer Free For Over Two Years Now.

geraldine · 10-02-2006, 05:23 PM

Hi Lani,

12th dec marks my 3rd year on Herceptin.. 2.5 yrs Herceptin only.

I was dx in 2001 after finding a lump on my left breast.. grade3...18/24 node pos. Had mastectomy followed by various chemo+ clinical trial + rads.

I was dx in 2003 with secondary b/c on the chest wall, same side and it was only then that I was told about Herceptin and that I met the criteria.

I have terrible itching on various parts of my body, especially on the scar. I suffer from sinus problems, weight gain, small ulcers on my tongue, eye sight deteriating ( my optician say my reading sight has not changed in 2 yrs but my distance has changed drastically, poor nails (allways pealing and breaking) and lately I have suffered severe cramping in my legs. I dont have headaches except for about 2-3 hrs after treatment. Last week I had the strangest feeling in my chest, just like a hundred needles stabbing. It only lasted about 10 secs. I will be going for an echo on fri, so hopefully I will find out, the reason..

I receive Herceptin every 3 weeks over a 1 hour infusion.

Hey I forgot to mention how scatty my brain is at times (this is an example) but I was putting that down to age (55 in jan)

Geraldine

lucky4x · 10-03-2006, 01:08 PM

Geraldine.

I was so happy to hear that you continue on Herceptin for 3 years. ( I know that sounds weird, but it gave me hope).

Leg cramps... I was told to increase my magnesium by taking mag/calcium vitamin and a multi vitamin with magnesium also. It has helped the cramps. I still get little ones in the mornings, but not the ones where you spring out of bed and try to shake or walk them off! Someone else told me she put a bar of natural soap in her bed by her feet... and it took care of the cramps for some strange reason! Worth a try.

The itching under arm on one of my scars is enough to send me through the roof! Funny... I never thought it might be Hercpetin...but ya, maybe it is!

I am also on one hour IV every 3 weeks. ( Going this Friday for onc checkup and chest xray and syma results and treatment).

Lucky

ninness@ns.sympatico.ca · 10-08-2006, 02:28 AM

Have been reading with interest the many side effects from Herceptin. I have had most all of them. I finished Herceptin treatments two weeks ago and am looking forward to feeling better. My Muga scan has gone down to 48 so am very fatigued all the time. I did have leg cramps at night but believe it or not I put a bar of soap between the sheet and mattress and I have not had a leg cramp at night since then. It is an old wives tale but many people have found that it works (actually found a testimonial to this on the internet). I used Ivory soap but any plain type of soap would work fine. Hope this will help some of you who have leg cramps at night. Believe it or not it does work!

-Nina

Carol E · 10-09-2006, 04:17 AM

Hi,

Just wanted to say that I also had bad cramps (feet and legs) tried the bar of soap a couple of weeks ago, my Mom suggested it from a friend, and I have not had one cramp in my feet or legs!! Also, if you have trouble with constipation, I tried a tea called Smooth Move, love the name, anyway it really works, it comes in fruit flavors, (didn't like the taste) and chocolate, (the best). Hope this helps someone.
Smile a mile,
Carol E

Her2nSue · 10-09-2006, 09:07 AM

Just browing over the latest posts and wanted to put in my 2 cents worth of what a great thing we ladies have here with all the information everyone puts out on what works and what doesn't and what other things to try to make our lives with cancer and it's aftermath a bit more easier and to realize that we are not alone or imagining our symptoms. They are real and we are not hypochondriacs, nor do we deserve the strange looks when we try to discuss our symptoms to the Oncologists and then get a brush off. They really should be involved in this site, so that they would have a better understanding of their patients. Just expressing my opinions while my mind is staying in one place at the moment. Thank you ladies for all that you do with your support, information, humor and just helping the rest of us get through the days.

Sue

Emelie · 01-26-2007, 08:04 AM

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 · 01-26-2007, 09:47 AM

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 · 01-26-2007, 10:04 AM

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 · 01-26-2007, 07:08 PM

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

gin-tx · 03-17-2007, 09:39 PM

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 · 03-18-2007, 05:55 AM

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