Headaches from Herceptin

Saltygirl

I finished 6 rounds of TCH back in September and have been doing Herceptin every 3 weeks since then. I've recently started having headaches daily. Anyone else experience this?

SpecialK

Yes, particularly toward the end of the year of infusions.  My headaches were not severe and usually handled with Tylenol, but I did get them frequently.  This side effect cleared after a period of time following the end of my Herceptin infusions.

Saltygirl

Thank you SpecialK! I didn't getthem when I was doing the chemo so of course when they started now I started to freak out.

CassieCat

Oh, I hope I don't have this SE. I had terrible migraines after the first four TCHP (I get migraines anyway) but managed to not have them for rounds 5 and 6.

Moderators

Welcome to BCO Saltygirl.

Glad you joined so you could post questions and get responses to let you know you are not alone. We hope your headaches ease and go away soon.

All the vbest

The Mods

lkc

Try drinking slot so water day before, day of and day after. Also, what helped me tremendously was popping 2 advil 1 hr before infusion.

lkc

I meant to say lots of water!

Gongshow16

I've been trying to find some info on Herceptin and head/sinus issues.  I've been in the Winter Rads group and thought I'd search around and here you are!  I've been having more of a sinus type of pain with the Herceptin.  It's like a pressure on the sides of my head that spreads down to my jaw bone and upper teeth - typical of a sinus infection, if you've had one you know what I mean.  Went to the family GP because I was told by the MO that it can't be the Herceptin.... took antibiotics but they really didn't do anything...anyone else have this issue?

Geezlucy

I am on Herceptin every three weeks for a year...it was given to me weekly with my chemo for 9 weeks and now just the Herceptin.  I have had headaches with every treatment.  They are off and on during the day.  Mostly on the right side of my forehead in the sinus area and in my neck. They last about 10 days leaving me a few days pain free before the next infusion. My nose is constantly dripping which I have read a a side affect also. I have been told it is very successful in the fight against the HER-2 diagnosis.  A small price for giving me some more years but does get a bit hard to deal with sometimes.

lindaontario

i am taking the same as you took 11 heceptin with my chemo and then had 16 treatments of radiation my heart started to show problems so had a two month break from Herceptin now back on it from August until March of 2016 am having lots of sinus problems you are right if it is successful we can handle all the side effects good luck in the treatment we are all in this together and its so good to have a group like this to know we aren't alone in this battle.

wabals

I have headaches too and worse nasal congestion than usual. It gets better the farther out I get from treatment. What a pain in the neck! (Pun intended!

Her2_jewel

I finished Herceptin on 6/18/2016 and I have had what I call burning sensations in my head. I have had several tests including CT & MRI to see what is causing this problem and nothing has showed. It effects my vision (blurry) and makes me nausea, it is terrible and I lack strength to do anything but rest. I have also continued to have significant weight loss since stopping the treatment and the doctors can't explain that as well.

I have avoided posting so that I don't sound like a negative nelly but I am at my wits end with this. I have tried tylenol, ice packs, xanax, saline solution for sinuses and nothing seems to be working. There are very few days that I can say that I don't have this issue. I am frustrated because it has made my quality of life terrible. I would greatly appreciate any feedback anyone has. I want to move forward and get back to a somewhat normal life but these issues are making it impossible.

pupmom

Her2 jewel, it would help if you put your diagnostic stats into your profile. Best wishes!

Denise-G

I was only able to be on Herceptin 3 months during Taxol because of heart issues, but I had headaches from it and sinus issues.  After stopping Herceptin, it went away rather quickly.

BTW, with only 3 months of Herceptin,  Her 2 Pos, Stage 3, huge tumor, 9 positive nodes, heart attack from AC Chemo and permanent valve damage from Herceptin, I will be FIVE YEARS out next month!  It was all worth it!!   Sending encouragement!!

Geege

to jewel and the rest of you wonderful strong women with headaches from treatments;

I have always suffered from headaches, but since I started treatments they occur almost daily. I have hers 2+ and received chemo, radiation, a year of herceptin, and am on my fourth year of arimdex. I sympathize with you. They can take days out of your life. Please try this drug. It is called Relpax. My husband was told about it just by mentioning how I suffer with headaches. It is a life saver to me and I feel I must share with the rest of you. It won't stop the headaches but when you get one it takes it away,sometimes in an hour. Ask your oncologist for a script for it. Good luck and God bless!

CENOK2017

Hi All,

Did any of you get intermittent stabbing pain in one temple after TCHP? I can't seem to find an answer.

Worried

Gimil

I found that the better I could stay hydrated with nasal sprays and gels..the headaches were held at bay...I think it is just so dehydrating as side effect..

HCGreen

HI! During Taxol and Herceptin (I had them together, weekly, for 12 weeks, ending August 2017), I had horrible stabbing pains in my right temple, and I still have a milder version of it happening on and off, along with migraine-ish headaches and a regular dull ache.

I had an MRI in October that was clear, but the intensity of these headaches, when they happen, is scary. I'm seeing a neuro-oncologist this week.

I'd love to hear from anyone else who has had this kind of headache on Taxol and/or Herceptin.

Moderators

Giimil -- thank you so much for sharing your experience -- hopefully that will help others!

HCGreen - welcome! We're sure others will be by shortly to share their experiences with side effects of Herceptin. Thank you for reaching out and we hope to hear more from you soon!

--The Mods

LoriCA

HCGreen I've also been getting debilitating migraine-type headaches, not regularly but often enough to be concerning. Had my infusion yesterday and woke up with one again today. Some days they are so bad that when I wake up, it's all I can do to drink as much water as I can, pop a couple advil (I'm already on opioids and hesitant to add anything else to the mix) and go back to sleep for the rest of the day.

I used to get migraines when I was younger but hadn't had one in over 20 years. At first I thought it maybe it was due to dehydration but lately I'm thinking it might be hormone related. Even though I'm post menopause (naturally) I've been having terrible hot flashes and night sweats and it feels like I am going through menopause all over again. It was bad enough the first time!!

I haven't thought to mention it to my doctor yet because we've been dealing with bigger problems, but now that we seem to have a handle on everything else I'll probably mention it to him on my next visit. Please keep us updated with what you learn from your neuro-oncologist.

PanzyS

I recently told my oncologist about the increased number of headaches I have been experiencing. I thought they were related to not only my long term experience with migraine headaches, but also a hormone suppressant med. Stopped the med per instruction and still have the headaches. Herceptin infusion yesterday, more headaches today. Adds up!

PanzyS

I am experiencing the frequent migraines and headaches, too. MRI was clear two weeks ago. Also noticed sharp pains that I have not experienced before. Scarry, so the MRI results were reassuring. After reading comments here, I now am convinced my headaches are associated with my Herceptin infusions. I will be very interested to see if I improve once I am off the Herceptin infusions every three weeks.

Denise-G

Herceptin headaches are a common side effect. My suggestion is search this board for Herceptin headaches. There is a lot of info out there especially in the Triple Positive Group. I had them and headaches were rare for me.

All my best wishes.