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

[ninness@ns.sympatico.ca]

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]

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]

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]

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

[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

[Carol Carlson]

I was on Herceptin for a year ( every 3 weeks ) from June /05 to May0/6
I was 9 months out of standard chemo when I started--I am stage 2B

Noted side effects
!. stiffness and achyness esp. in hands in the morning, hip pain while walking any distance ( still have that ) could be arthritic.It would also take a while for my feet to get going in the morning... sometimes they didn't feel like mine.

2. insomnia-- never was a "good" sleeper but definitely worsened on Herceptin.
( in fact I still have a PRN supply of a sleeping med and take it maybe 2-3 times a week)

3 weight gain-- 10-15 lbs, lost it after I stopped taking Herceptin but it seems to have crept back on

4. the nails-- Still split and don't grow as long as before

5. I've noted some thinning of my hair and that has remained the same

6. fatigue-- wonder if that will ever go away... after my surgeries, chemo, rads and then a year of Her., just don't seem to have the same energy level
and I do all the right things ( could be my age.. I'm 66 ) an oldie in the group

7. mental status-- didn't notice anything remakrable there.... maybe I've always been a little " foggy"---- just kidding---- I'm sharp as a tack


Overall, even though these things are annoying, I would say that after standard chemo, it was a breeze.

Hope this helps.
There seem to be many common threads re: side effects.
And as someone said previously, sometimes my onc. would look at me as though... how could you possibly have these things wrong, they aren't listed
in the medication insert !!!
Now, perhaps, they will start to look at these symtoms a bit more seriuosly with collected data.

Regards,
Carol

[Val Pfeiffer]

I am now on Herceptin only quarterly. I had a triple dose on Thursday. I never noticed this before, but yesterday when I went to my spin class, I drank THREE bottles of water in one hour. I am very thirsty for a couple days after (which isn't a bad thing). I just found that strange, and I didn't notice it as much when I was on a more regular dosage. I have a few of the symptoms that you guys mention, but not nearly as bothersome as some of you have experienced. I have had no weight gain--same weight as always, which didn't change during chemo or radiation either.

[Gerri]

Hi All,

I have been waiting for the day when I would finally be done with my Herceptin treatments and it is now here! I was on the every three weeks plan for one year and had my final (I hope) dose on Friday, March 16. My side effects (not necessarily in the order of frequency or annoyance factor) are:

*Chills - all the time, not just during infusion
*Jerking/twitching of my legs
*Lost my eyelashes (twice)
*Slow hair growth (but VERY happy to even have hair to grow slowly!!)
*Brittle nails
*Fatigue!!!
*Weight gain/inability to lose weight
*Cracked skin on fingers
*Vision changes
*Drippy/runny nose
*Back pain (chemo?)
*VERY tired/heavy feeling legs
*Stiffness after sitting

When all is said and done, this was a pretty easy road to travel. The year went by quickly and now I am looking forward to my "new normal".

Wishing you all good health!!

Gerri

[Allie1947]

I was diagnosed with ibc in Oct. 2006...started chemo in Dec. 2006, getting treatments every 3 weeks. Then started weekly treatments of taxol and herceptin in Feb. 2007. I'm in my 6th week...with 6 more weeks to go. During this time my hair has started to grow back in slowly...lost that after the first dose of chemo in Dec. My symptoms with taxol and herceptin are as follows:

aches in feet and legs, especially after going to bed
fatigue
brittle nails
dry skin
sinus issues
dry nose...with some bleeding
headache
body aches and pains
joint stiffness
back pain...which I attribute to a previous condition of sciatica, but maybe not.
insomina....
memory loss...often can't remember particular words, which could be related to lack of sleep, I suppose.

and ...something new...my heart seems to be pounding a little harder..and I find I'm feeling like I can't get enough oxygen at times. Will let Dr. know on Friday when I see him as this hasn't bothered me much before.

[SandyR]

Allie, by all means you need to get to the doctor....
While on herceptin your doctor should be monitoring your heart with a Muga Scan. Herceptin can lower your heart's ejection fraction for your left ventricle and you could go into a temporary heart failure.
If this happens, it is reversible by giving your body a rest from herceptin.
Good luck!

SandyR

[StillHere]

I never connected my running eyes to my Herceptin use, but now it makes sense as it has stopped since I had to discontinue due to LVEF of 40 last year. I just thought it was a cold, or sinus issues. Not that I had ever had eyes that tear up and run down my face for no reason before. It did not start right away. I was 5 to 6 mos into Herceptin treatment before I had the eye tearing thing. I have also had just about every symptom listed in above threads, but very tolerable.

[gin-tx]

Yes, all the symptoms you are experiencing are from Herceptin. This wonder drug sometimes is a pain to deal with but is still a wonder. It's kept me going for the past 9 mo. If my ins co would just pay for all of it, that's another issue.
I have constant runny nose, insomnia, joint pain, pain in feet at night, had acid reflux before but it's gotten worse, think that's enough. But I deal with it and try to keep going. Hope this finds you doing well, you've had a lot to deal with.
This is my 2nd episode of Bc, other was 11 yrs ago. But totally different types of tumors, the latest was much more aggressive.

Keep me informed of your progress.

ginkott1@aol.com