Herceptin - Quick Side Effects Poll

hopeful123

I am also on 3 week herceptin after AC-TH that ended September 2012. The bone/joint pain is my biggest side effect. It started with my back, which after X-ray, MRI and bone scan appears to not be mets. I also have severe shoulder pain (more in the joint of arm and shoulder). It is so bad that I find it difficult to put on my winter coat. I am so tired of being scanned (and the anxiety associated with it) and hope this gets better once I am done with HErceptin in June.

Myleftboob

I finished Herceptin in February 2013 after receiving it for a year in total.  First with my Taxotere and Cytoxin for 4 TX's then Herceptin alone every 3 weeks.  The things I noticed the most were slow hair growth and super brittle nails. I received the infusion over 30 minutes and it didn't seem to give me any ill effects. So its been about a month now and only taking Tamoxifen.  I still experience stiffness when I get out of bed particularly in my feet (could be Tamoxifen, who knows).  I do notice that my hair is growing faster though.  Man I look forward to proper bangs!

AnnePM

I have been on Herceptin for a year now taking it in tandem with Taxol (5 months) and a bone strengthener. I will be on Herceptin for the rest of my life as well as the bone strengthener - taking Herceptin every three weeks. I've had growing fatigue as my worst symptom. I sleep 10 to 12 hours a night and wake up exhaused. I sometimes go back to bed in the morning to rest more. Would anyone be in this situation and have improved with the fatigue?

ellieg

My hair was growing back slowly after Chemo, whilst I was on Herceptin. I believe it stays in your system for a few months after finishing your treatments (which is a good thing for the fight against BC) so I expected that I'd have to wait a while for my hair growth to pick up.

I returned to work full time, just before I had my 8th Herceptin infusion and, by that time, my hair had grown long enough to cover my head and was in a pixie style. I haven't had it cut since, as I have managed it by wearing pretty hair bands and pinning it up, more recently.

I noticed that is seemed to be growing a bit faster, from about 6 months after Herceptin ended, which is only recently, for me. I'm not sure if it's the same for everyone.

My hair has grown back thick and curly and doesn't appear to be showing any signs of becoming straight, as it used to be. I'm growing it long again, to my pre-chemo style, and, at least with the curls, it's manageable and doesn't need trimming because it's grown in layers and I can pin it up to a loose cascading bun now. I'm just happy that it's growing, so I'm trying not to be impatient really

Anonymous

AnnePM - I've been on herceptin since October '12. I haven't noticed any major side effects. I do find on the day of txt I'm a little more tired than normal but it tends to pass. Maybe talk to your oncologist and see if they have any suggestions for you? Good luck and feel good!

GrandmaV

AnnePM, How is your red cell count?  If you're anemic, that may account for the fatigue. 

6cats

Wanted to revive this thread. I will soon be starting 9 months of Herceptin only, once every three weeks. I also have fibromyalgia. Interested in hearing about day-in, day-out SEs...

Anonymous

Hi 6cats. After today, I'll only have 2 more herceptin treatments and will kiss the chemo suite goodbye! Can't believe the long haul is almost over. Your 9 months will go faster than you think. After ACT - Herceptin only really felt like a breeze for me. I'd say about every other treatment I'd get a headache for a day or two and be a bit grumpy and tired - but that all might have to do with it sometimes coinciding with my period (which has stayed with me through tamoxifen...). If you had minimal side effects when you were doubling up on Taxol and Herceptin - I'd say you'll be able to expect a pretty easy go with the just herceptin treatments. Good luck!

ddfw

Hi I will be starting 5 1/2 months Carboplatin/Taxotere concurrent with Herceptin and continuing Herceptin for 1 year.  I am glad this site is available for newbies.  I do have mixed emotions about reading all the SEs...good to know but scary.

bcbarbie10

Ddfw and 6cats, ramols is spot on. Herceptin is a walk in the park after ACT. I finished my herceptin this July and the only SE i got is a feverish feeling the day after. In my center they still fave me the premeds cocktail so i also got the constipation the following day. Smooth Move tea took care of that, though. Oh, and the runny nose. And I split one toenail weeks after the last. Hang in there. I could even go to movies after infusion!

gonegirl

I've been on herceptin alone for a year.



Day of infusion, I experience fatigue. It's worst on day 1 and gets better in a day or so.



I do have some dry nose issues, but not bad.



I might have gained weight on herceptin but this might be related to my chemo-induced menopause.



All in all, very small price to stay alive. :-)

6cats

Ramols -- one reason I was asking was that I've had pretty bad SE with Taxol/Herceptin so am trying to sort it all out. A/C was easy, just a little nausea and a little fatigue. With weekly Taxol+Herceptin I've felt the cumulative SEs, severe fatigue, severe body pain, chemobrain, occasional headache, constant runny nose. I have no idea what is related to the Taxol and what is Herceptin so thought I'd check in... I go Thursday for my first Herceptin only.

MinusTwo

6cats:  I had 6 tx of Taxorere/carboplatin/herceptin & perjeta every 3 weeks w/neulasta shots after every tx.  Now I'm 18 days past my first herceptin/perjeta only.  I'm glad to be done w/the tax & carbo.

Constant diarrhea went away - hooray.  Still some dry nose but not as bad.  Muscle pain in my thighs & calves pretty constant - thinking I might try Claretin that I used for neulasta?  Neuropathy is my biggest complaint.  Since I'll stay on the perjeta too, I can't be sure how much of this is herceptin.  Please let us know how you do w/herceptin only.

jocanuck1951

Hi, I've been on herceptin alone since April 30/13 I had severe s/es and the ladies recommeded 1.5 hours instead of 1/2 hour infusion time...wow..what a difference! I couldn't walk for 2 days now its mainly joints and from my knees to toes my skin hurts and I'm swollen, small headaches day of infusion and 2 to 3 days after, fatigue, and a bit b*tchy but I think I had that before BC lol! I hope I have my S/e's for many years! Jo

gonegirl

Jo. Me too. :-)

jocanuck1951

Gritgirl, my life now is gingerly putting my foot forward to make sure there's solid ground below, very surreal living with this. Jo

gonegirl

Jo. It is indeed. I have been told by others that as time goes on, I will step more solidly. I've gotten to the point where if something hurts, I just think it'll have to wait for the scan. :-)

Really

Every 3 weeks

9 weeks after TC - 3rd only Herceptin

Hot, prickly skin and syncope 45 minutes into a 1 hour infusion

Intermittent hives for 4 days after Herceptin

GrandmaV

 Really, that sounds serious.  How long were you out?

GrandmaV

gritgirl, I was reading your blog, and you write beautifully.  I hope you don't mind if I direct others to you're blog.   It's so inspiring.  Thanks.

lovelikecrazy

I am on Herceptin only now and at the last appointment asked my oncologist if I could get a flu shot.  He said, "you can but it won't work".  Does anybody know why?  I wish I had asked him more at the time.  Blame it on chemo brain.

Anonymous

lovelike,

My oncologist recommended I get a flu shot! They gave them there at the clinic so we could get them even when there were sometimes shortages at other Drs. offices.

I did a year of Herceptin with weekly infusions. No discernible side effects at all -- definitely a walk in the park after what I went through with chemo. But I also took Claritin for my allergies (who knew it might help?) and ibuprofen for arthritis I've had for many years.

sciencegal

Hi lovelikecrazy- as a scientist who works on the immune system, the only reason your flu shot would not work is if you still have super low blood counts after chemo. Otherwise your doctor is wrong. herceptin does not alter the benefits you would obtain from a flu shot. It does not suppress your immune system, just focuses a small part of it on attacking the breast cancer cells. All of your other lymphocytes are available to fight the flu, and respond to the vaccine.

Maybe he or she wasn't listening properly or was thinking you were a different patient, still in the middle of chemo. I am sure they took basic immunology in med school!!!!

I would recommend it- I have had the shots for the last five years and have not had flu (knock on wood). I use a TON of hand gel too!

Good luck

lovelikecrazy

Thank you Sciencegal. I know he said the word, " lymphocytes" but I didn't understand what he was saying and didn't ask for further explanation. I will get another treatment soon so will ask again.

sciencegal

Good please get some explanation, if your blood counts are still really low after finishing your taxol and radiation, you need extra vitamins and rest to get your immune system back. Please take care of yourself!!!!!!

Hugs

6cats

For those that have had muscle pain, headaches, and fatigue... how soon did it start after your infusions? Was it cumulative, or did each infusion have its own rhythm?

Since I've only had one "herceptin only" infusion, I don't know if I'm overdoing it (last chemo was 4 weeks ago), if it is fibromyalgia, or if it is side effects.

Any thoughts?

sciencegal

I have it for a couple days after infusion. Kind of flu-like but not horrible. Does not seem to be cumulative, I am almost to the end of my one year on Herceptin only and it is about the same.

sciencegal

I have it for a couple days after infusion. Kind of flu-like but not horrible. Does not seem to be cumulative, I am almost to the end of my one year on Herceptin only and it is about the same.

Ukkate

Have any of you experienced leg pains? I DJ on the weekends and after 5 hours of standing, my legs hurt so badly I can barely walk. And then they hurt all week. I've had 3 "solo" hercepten treatments so far

6cats

I have had leg aches also... I just assumed it was due to a change in my calcium supplements. That was after herceptin only #1 -- just had #2 today so we shall see what happens.