Please post your two cents on Herceptin "side effects" real or perceived! - Page 26

gonnabstrong · 06-20-2010, 05:54 PM

I had Herceptin through IV's, no port.

tharrel · 06-22-2010, 07:53 AM

Last herceptin treatment will be this Friday (June 25, 2010). I have had dry eyes throughout treatments. I quit wearing my contacts and used moisturizing drops all the time. I went in for my eye doctor and told him about treatments and eye problems. He prescribed me a new contact prescription that kept eyes moist. They really did help. I still make sure to take out as soon as I get home from work.

I also have had the aches and pains. Joints tend to "freeze up" if I sit for more than 10 to 15 minutes at a time. I am 42 years old and feel so much older.

Here lately I have been getting dizzy when standing up. Checked my blood pressure (I do have high blood pressure) but it is fine.

weety · 07-12-2010, 01:28 PM

Anyone else have itchy skin (but no visible rash)? It is a little weird in that it only itches on and off--feels almost like a prickly feeling and only on the arms below my elbows and back of hands. Weird, I know.

ymryan · 07-13-2010, 06:36 AM

Stage IIb, began taking Herceptin with chemo in January 2010. Chemo ended May 2010 and now taking Herceptin every 3 weeks until January 2011. I am very tired shortly after the injection (a nap cures my tiredness). I take a water pill every day to keep down swelling in hands and feet. No other side effects noticed as a result of the Herceptin.

kristen · 08-04-2010, 04:07 PM

I was dx in 10-03, almost 7 yrs ago. I was on the trial and got the THC combo. I had herceptin every week for 18 I think? and then every three til 52. I was 41 at dx and my eyesight had started to decline by then and I gained weight while on treatment, but lost it all. I have been having insomnia ever since, what I have noticed and I don't know if it's the med's for sleep deprivation, but I still and it is getting worse is the chemo brain, or foggy brain. I cannot remember anything. I see that some people have regained there memory and some haven't. Has anyone noticed it getting worse? My hearing got bad and stayed bad, that was from the carbo, my eyes, getting worse, some will say it's menopause, others will say it's stress related, my teeth are in need of a lot of work, I am to young to feel this old. I am glad I got on the trial, I am ever so grateful, but I would like to know if this is normal aging or if it has something to do with the drugs I was on. When I looked them up for side effects the effects should have stopped when I stopped the treatment, and no, no one from Genetech ever contacted me about side effects. thanks Lani for the post!

Jackie07 · 08-04-2010, 04:30 PM

Kristen,

You are just two years younger than me. I think most of what you've experienced are menopause-related problems. Certainly chemo did not help...

One of the suggestions during treatment is to have our teeth checked. Though Herceptin is not considered 'chemo', it has some strong side effects.

Your memory will come back as long as you 'work on' it. Most of us don't use but 2-3 % of the brain cells in our whole life. More exercise (both physical and mental) will get more 'synapses' which is the connection of the neurons. Go register for a class in your local community college. Any 40+ person will find it difficult to take on a new task. But you will be surprised how fast things will improve once you put your brain to task.

kristen · 08-05-2010, 07:08 AM

Thank you Jackie, I'm sorry you were experiencing the same thing, but it's a relief to know I am not loosing it, as my kids so kindly remind me : ) I have actually been looking into some classes for what I want to do when I become an empty nester. I do however play a lot of word games to try and keep my mind sharp and I read a lot. I had my hyst. in 05, so how long does it take to go thru menopause? I went thru it twice. First time with chemo, then again w/hyst.

pibikay · 08-12-2010, 04:22 AM

My wife experiences redness of the eyes for 48-72 Hrs after Herceptin. Is it a common side effect?

msleslie · 08-24-2010, 04:34 PM

Initial TCH injection was 08/19. Weekly Herceptin for 18weeks and then every 3 weeks up to 52weeks. Not sure of side effects that are specific to Herceptin since I'm taking taxotere, carboplatin, and Tykerb as well.

msleslie · 08-28-2010, 05:44 PM

Just completed my second weekly dose of herceptin on Thursday and today I noticed that some of my toe nails are beginning to come off. I was expecting them to flake or something but was surprised that they have actually separated from the nail bed.

AIMhiGh · 08-28-2010, 07:03 PM

I think this is a great thread. Herceptin side effects are so cloudy since they're usually mixed with other treatments. To the gentleman whose wife has the red eyes, i'd guess it's normal. I quit wearing contacts and dry eyes (mine are stinging) come up a lot on this site. Brittle or just thin nails also seem in the majority...Separating from the bed? I'd guess that's more than just the Herceptin. My hair a year after chemo but on Herceptin is still dry and frizzy beyond hope. I never really chalked these up to Herceptin, just chemo-rebound. for mental fuzziness, you might search for the Brain Gym (there's a .org an .com--both related). My hospital's cancer resource center had a session about it. The exercises are very similar to those I've seen used for special education and in neurological screenings, so it seems sound to me. Many of the things you can do in bed or while waiting for your toast to toast. 'can't speak to effectiveness, but there's hope, certainly, that the chemo-brain effect is only temporary. So with all that, would you all continue after the prescribed year?

msleslie · 08-28-2010, 07:09 PM

About 24hrs after treatment, I had the red eyes as well. I do not wear contacts or glasses. It was very noticeable - my children pointed it out to me.

MaryAn · 08-28-2010, 08:28 PM

I get very sad after treatment so I need to get myself up and mess around with my niece and nephew. I also have a seriously dry throat. I've been using gum and lemon drops to deal with this.

v-ness · 09-02-2010, 05:22 PM

11 months into Herceptin and i'll be glad when it's done so i won't look stoned anymore. bob marley's eyes weren't this bloodshot and glassy! valerie

Ronnie · 09-08-2010, 05:52 AM

Good Morning, 11 years ago my mom had a lumpectomy; we were told it was cancer in situ. She had radiation for less than a year followed by five years of tamoxifen all without circumstance. At 83 mammography found another lump removed by lumpectomy and identified as Her2 +. She’s been receiving Herceptin every three weeks since July. The most profound side effect is forgetfulness and confusion- which seems to be getting worse with each additional treatment. She is a traveling dog groomer and recently she got lost in route to a customer's home she's visited every three weeks for years. She doesn’t remember phone numbers and forgets the day of the week she’s in. Needless to say, this is causing her great concern- frustration and fear. She sees her IM and hematologist this Friday. Curious of anyone can offer suggestions to support her through this specific side effect. In gratitude; -R

Lien · 09-08-2010, 06:26 AM

There are two things I can think of: dosage could be wrong. Elderly people metabolize differently. Also, it could be a late effect of anaesthesia. The same issue could be seen here. Drugs are tested on adult males, not on children and elderly people. They get these drugs anyway, even though the effects may be very different. Difficult issue. My Dad is taking lots of meds and his neurologist wants him to see a doc who specializes in elderly people's medication and their interactions.

I'm impressed with your mom, though still working at 83.

Jacqueline

Ronnie · 09-08-2010, 06:34 AM

Lien- thanks for your insight and your kind words re: mom. She is my inspiration. Best-R

AIMhiGh · 09-14-2010, 10:54 AM

My 17th (last?) Herceptin teatment (1ce/3wks) was 6wks ago. It followed 8 dose-dense rounds of A/C-T each followed by Neulasta shots. The 1st treatment was concurrent with IV Reclast and caused 104+ fever and full-out flu symptoms. Radiation started 8wks later. All was interspersed with staggered mastectomies, an oophorectomy, reconstructive procedures & Femara so I haven't been able to make sense of what's caused what. With about 3 wks since the last Herceptin, I thought I'd share what's changed.
1. My nails are already noticeably stronger.
2. Mental clarity is definately improving.
3. Despite great angst about stopping treatment, my energy level has increased.
4. The above may be due to a 7% EF increase at 4wks post.
5. My eyes have stopped thier constant watering & stinging.
6. My nose has stopped that perpetual, tiny water-spicket drip.
7. The invisible but intensely itchy arm rashes have disappeared.
8. I think my eyelashes and hair (both of which regrew but not-quite-right) are getting stronger.
9. The bones in my feet no longer ache.
All that said, had it not been for the compromised EF I'd be doing my 19th treatment tomorrow, but I thought this might prove helpful to those evaluating their options and looking for causes to their SEs.
Good luck to all of you!

09-16-2010, 07:00 PM

Hi
I have had five doses of Herceptin once every three weeks and am now in congestive heart failure. Herceptin has been stopped and Im now on heart meds Tritace. Started last week. I had a heart echo back in March this year before I started Chemo. I had 4 doses of Chemo from 5th March to 14th May. I started Herceptin on 4th June. My cancer clinic failed to tell me of another heart echo to be done in August. So I was fitted in for the 8th Sept and the result is heart failure. I am very worried about this and hope all will be okay. Cancer clinic says the damage will reverse in a couple of months, my doctor says hes not sure about that.
I would appreciate some comments about this

Jackie07 · 09-16-2010, 07:52 PM

Sorry for what you've been going through.

I had to stop my Herceptin treatment in January, 2008 because of reduced heart function. We did another MUGA after 4, 5 weeks, but the number had further declined. (I have 'Mitral Valve Prolapse' and had had a full-dose of chemo back in 2003.) There are a couple of members on the board who're able to improve their heart function by exercising and taking certain medication.

Let's hope they will see your post and reply soon. You can also use the 'Search' function to check on previous postings on the subject.