Please post your two cents on Herceptin "side effects" real or perceived! - Page 4

Carol Carlson · 03-18-2007, 07:58 AM

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 · 03-18-2007, 08:17 AM

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 · 03-19-2007, 10:02 AM

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 · 03-31-2007, 09:41 AM

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 · 03-31-2007, 09:53 AM

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 · 03-31-2007, 06:41 PM

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 · 04-03-2007, 06:08 AM

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

Judy Smith · 04-25-2007, 12:23 PM

I have been on Herceptin for 1 and 1/2 years. I began with Stage I BC and reacurrance now has me at Stage III. My side affets include nail splitting, dry and splitting skin around nails, feet and some leg cramping, and joint pain (a little rib pain lately also). I feel fortunate to be feeling as good as I do and I am thankful that we have Herceptin to help us fight this disease. Hearing about others side affects has helped me calm myself when I feel something new and want to put a lable on it---Thanks everyone for posting.

Judy

atdec05 · 04-25-2007, 12:29 PM

Hi Judy,

Did your recurrence happen on Herceptin? Did you have Herceptin when you were Stage 1?

I was stage 1 and had a recurrence noticed during my last month of Herceptin. I am now doing rads and will then do Taxol + Herceptin. The doctors think even though my recurrence happened on Herceptin there may be synergy when given with Taxol. So I'll end up with 1yr 3mos. worth of Herceptin

I had joint pain that is improved because of Glucosamine & Chroniditin. Also had elevated blood pressure that seems to be going down. Maybe exercising again is helping.

- Anna

gin-tx · 05-12-2007, 12:40 PM

Dear Judy,

I think every person has different side effects. I have insomnia, body aches, constant runny nose, headaches, but no problems with nails or cuticles. I have been on Herceptin almsot a yr, this is my 2nd episode of BC, first in 1995, had lumpectamy and radiation. This was much more aggressive, Stage IV metastatic with tumor on spine, have had radiation to spine, lungs, now in holding pattern. Due for CT in a couple of weeks. At this point no spread to lungs or liver but tumor not decreasing either. Keep in touch and let me know how you are progressing. I hope you continue to do well and some day there will be a cure for this dread disease.

Hugs,
ginkott1@aol.com

bailey · 05-12-2007, 01:16 PM

Good luck with your scans - stay positive - you have done so well.
When I was on Herceptin they told me I would have aches etc. - I found the one thing that really always has helped me was working out and I do it at least 5 times/week in the gym, eliptical, spin classes, weights, but I keep by body moving as much as possible. As for the drippy nose, I have bad allergies so I'll just go with that but it's nothing I can't deal with - it's always going to be something I guess but different for everyone.

Stay positive and full of life everyone.

bailey · 05-01-2007, 04:13 PM

Ladies - I am overwhelmed with what I'm reading about everyone's reaction to herceptin. I am Stage 4 mets BC - I started my chemo, second time around in 2003 for mets to the lung and liver. With the chemo I also was given herceptin. Once off the chemo at the end of 2003 they kept me on herceptin and my last one was last Wed. I would go for herceptin every 3 weeks. At no time did I have any side effects. I just turned 54 in Jan., I have always had nail growing problems so I just keep them short now, the dry eye syndrom can also be from menopause and there is a eye drop product called Soothe which I use about 4 times/day and helps keep my eyes moist, for any dry skin I always moisturize my body after a shower with body cream, not lotions as they are not as hydrating, I work out in the gym each morning - 5 days/week which includes spin classes 3 days/week. Yes I'm tired at times but I push myself to workout because I know I'll feel better when it's over and also I have the joint problem but that's from the Arimidex and that's why I continue to work out to keep my joints moving. I had gained weight after chemo but have since lost it - 18 lbs. by eating 3 meals a day and 2 little snacks - I eat healthy and stay away from alot of carbs like breads and pastas but eat alot of salads and fish and grains but of course with Italian my favourite food I eat it at least once per week. I enjoy a good glass of red wine each night and sometimes 2 on weekends. I guess in alot of ways I just didn't even want to know about the side effects because when I know about them I get them so I just say I will not have any. I wish I could have stayed on the Herceptin, it was easy for me but now will be starting tykerb/xeloda next week. Alot of the weight gain can be caused from the craving of carbs but I truly believe that the exercise has helped me so much. I do an hour/day and before I go to the gym I get up at 5:30am to walk my dogs then off to the gym. Like I said, I am tired but afterwards I feel great and have done something wonderful for my body. I also take 4000 milligrams of fish oil/day - spread out 4 times/day - a good high quality fish oil - helps with the immune system and keeps the skin moist. Along with that I take 1 400 mg. of Folic Acid but I divide it up into 4 pieces and take a 1/4 with each fish oil. I feel great!! I hope this helps someone.

fisherac · 06-05-2008, 04:04 AM

Baily, you sound so positive and driven. I hope I can be like you during my herceptin treatment! thanks.

Thanks everyone for the posts!!

06-13-2008, 04:46 AM

I haven't read the whole thread, so please forgive me for barging in. One of my friends recommended this site.

I'm having a TON of these side effects, including a wicked rash that lasts for 5 days, post-treatment. Anyone else have this?
Also: runny, dry, cracked, bleeding nose (by turns)
fingernail flaking
nausea
vomiting
weight gain/loss (also by turns)
headaches
dizziness (could also be the plethora of pre-meds I'm on)
chest pain
tingling in L arm and fingertips

Due for MUGA on Monday morning, but thought I'd post here anyway, just to say THANK YOU for all the wonderful information! It's so nice to know I'm not just a weirdo with these.

I guess I should sign in and make an ID for myself, since I am HER2+++.

Thanks, Janelle (if you're reading) for letting me know about this board!

Becca
DX: 11/30/06 DCIS
2nd DX: 2/28/08 IDC w/DCIS

4 rounds TC - done
52 weeks Herceptin
ER+, PR+, HER2+++

Janelle · 06-28-2008, 09:34 AM

Becca,
I just saw this now! You're welcome. You should start a new thread so you get more traffic.

Janelle

Chrissy · 05-02-2007, 06:33 AM

I have just started Herceptin along with Taxol. Had bone/joint pain for about 3 days, but it has gone away. Have a drippy nose continually. Have second treatment this week.

bailey · 05-02-2007, 07:15 AM

Chrissy - not sure why you have the drippy nose maybe from the Taxol. I had no problem with that on Herceptin - could it be allergies at all? Just a thought?

skye · 05-02-2007, 07:44 AM

Hi, if you look at the official Herceptin side effects, a "flu-like" condition and or drippy nose is very common for the first week of Herceptin. I didn't know it at the time and thought I was getting a cold that just never developed, then I looked it up and went A-ha! It disappeared as the week went on but can recur at times from what I understand. Keep those Kleenex handy! - Skye

gin-tx · 05-16-2007, 06:24 PM

Dear Skye,

So glad you have done so well with Herceptin. I too have drippy nose, constantly. I sometimes forget about it. When I think of it it seems to start in again.

I too have some side effects but feel lucky I have things I can tolerate. No itchy feet, by end of day I am just exhusted though. I come home and try to sleep for 30 min. Some days I wait too late to lie down, get busy with phone calls, etc. I'll be glad when I'm done with treatment, am getting real sick of it since it's been a yr.

Keep in touch and let me know of your progress.

hugs,

ginkott1@aol.com

skye · 05-16-2007, 08:55 PM

Hi Gin,
Yes, the nose is still dripping. The only other symptom seems to be a general sluggishness but I still feel much better than I did on Taxol. Feet have stopped itching too. I think I can do this! And I did get my onc to switch my schedule to every three weeks instead of weekly, thank goodness.
Glad you are doing ok, too! - Skye