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All TopicsForum: HER2/neu Positive Breast Cancer → Topic: Herceptin Headache

Topic: Herceptin Headache

Forum: HER2/neu Positive Breast Cancer — Testing, Herceptin (trastuzumab) treatment, side effects, and more.

Posted on: Jun 8, 2007 07:32AM

LittleFlower wrote:

Hi Ladies,
Well, I'm on about my seventh herceptin infusion (done every 3 weeks) and I have definitely noticed the headache that some women have posted related to herceptin. My question is, they used to last couple of days but after my last infusion, i've had headaches for the past week. Usually takin acetominophen helps, but the fact that they're lasting longer scares me. Could someone please respond regarding their headaches with herceptin, did they get worse as treatment continued and is there anyone who needed something different than tylenol to help?
Thanks
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Jun 8, 2007 01:06PM lexi4 wrote:

I had headaches, too. I actually had two brain mri's to make sure there wasn't something going on. They would last for a couple of days after my herceptin tx. Nothing would help them go away. They would go away on their own. I believe that I have read that this isn't too uncommon while taking herceptin.

I know it's all so scary. Every ache makes me jump.

Hugs,
Lexi
Dx 8/22/2005, IBC, 3cm, Stage IIIb, Grade 3, 5/6 nodes, ER-/PR-, HER2+
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Jan 19, 2009 08:47PM dredma1 wrote:

My girlfriend has been getting headaches for the past several weeks (since 1/1/09).  They last all day, every day.  Tylenol does not help.  MRI negative.  The weird part is that she has been on herceptin for almost a year with no prior headache issues

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Jan 20, 2009 10:52AM ejlj wrote:

getting lots of headaches as well as many other pains these days and it's making me very nervous!  I've heard that it can be herceptin related but it still makes me insane!

Dx 4/4/2008, IDC, 3cm, Stage IIIb, Grade 3, 2/12 nodes, ER-/PR-, HER2+
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Jan 20, 2009 11:17AM fightinhrd123 wrote:

Only  had 3 infusions, no headaches, but achy legs and joints.  I think theres all kinds of side effects from herceptin noone tells us about!!!

Dx 5/29/2008, IDC, 2cm, Stage IIb, Grade 2, 2/14 nodes, ER-/PR-, HER2+
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Jan 20, 2009 12:31PM ejlj wrote:

my legs have been achy too,  do you think it's the herceptin?!?!

Dx 4/4/2008, IDC, 3cm, Stage IIIb, Grade 3, 2/12 nodes, ER-/PR-, HER2+
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Jan 20, 2009 11:20PM fightinhrd123 wrote:

ejil, i believe its the herceptin.  I had achy legs during chemo too, and ive noticed there worse for a few days after my herceptin!!!  Gonna see what my doc thinks, i just kinda realized it started up again with the herceptin!

Dx 5/29/2008, IDC, 2cm, Stage IIb, Grade 2, 2/14 nodes, ER-/PR-, HER2+
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Jan 21, 2009 02:20PM ejlj wrote:

fightinhrd123-let me know what your doc says.  Thanks
Dx 4/4/2008, IDC, 3cm, Stage IIIb, Grade 3, 2/12 nodes, ER-/PR-, HER2+
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Jan 22, 2009 11:51AM snowyday wrote:

I will join the headache group on herceptin as well, man they hurt. they seem to get the left eye and ear area and of course the whole area around it.  I also find that after my herceptin my neck feels sore, sort of stiff and feels like it's going to explode, it's the only way I can expalin that. I goes away after about a week and half.  Go figuire, anyone else get that?

PN

Dx 5/24/2007, ILC, 5cm, Stage IV, Grade 3, 0/2 nodes, ER-/PR-, HER2+
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Oct 25, 2009 01:08PM, edited Oct 25, 2009 01:12PM by idonailz61

Yes, snowyday.  I too get these symptoms.  I have had a headache since my first herceptin infusion, which was December 11th, '08.  For the first 19 weeks, I was infused with Herceptin every week.  After that, I am triple dosed every third week.  The headaches begin about 15 minutes after my Port is accessed and they don't generally go away until about a week to 10 days after.  However, my headaches are mostly right side, including ear and neck.  My Doc has prescribed Fioricet, which does give me relief.  Unfortunately, it does have dependency tendencies.  I really don't care about that and neither does my Doc.  He feels that I'm addicted to NOT having headaches as opposed to being addicted to the meds.  Just  a word of advice for those who had a tendency toward headaches pre-Herceptin:  check any other chemo drugs you may be receiving including Arimidex and/or Tomoxafin.  They, too show headaches as side effects.  It's a vicious cycle, but the end result, hopefully, will be ok! 

dx 10-1-2008, IDC, stage II, 3.5 cm, Her2 +, estrogen receptive, micro-metastasis in closest lymph node, prognosis according to Onc: cure.  

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Oct 28, 2009 05:57PM, edited Oct 28, 2009 06:00PM by CoolBreeze

This thread terrifes me.

Headaches/migraines have been the bane of my existance for 22 years.  The headache pain you ladies are describing sounds similiar to a milder migraine.  (Full  blown ones leave you vomiting, unable to move, in true agony for 18 plus hours)

A week ago I had a unilatral mastectomy with TE, and just as I feared, the morphine gave me a horrible migraine.  I had warned my doctors that I would need imitrex in the hospital but the nurses were too ignorant/busy to understand the dosage so I didn't get enough to keep the pain at bay.  I was left with the Sophie's choice of refusing morphine and suffering the surgical pain to keep the migraine from returning, or dealing with migraine and getting surgical pain relief.  (But, since migraine makes you vomit then you know there isn't much relief).    If you have never experienced a migraine, you might be surprised that I chose to the surgical pain - migraine is the worst pain I've ever experienced and I had one 48 hour unmedicated hard labor.

If you knew me, you'd realize that when I say I was left crying - wailing - in pain in bed waiting for imitrex would be almost impossible.  She had it in her hand at 6:00, left to do something and didn't come back until 7:30, leaving me in agony.    I don't cry, ever.  But it was THAT bad, I completely lost control.

Imitrex is an expensive medication.  I only get 9 pills and 4 injections a month, which is not enough, so I also take fioricet and norco on a regular basis, and have for 22 years.

Reading that herceptin can cause a headache terrifies me.  Honestly, I don't think I'll get through herceptin treatment unless there is a plan for dealing with any resulting headaches, which for me are likely to end up full-blown migraine.

But, to give you ideas - you might ask your doctors about imitrex and see if it's indicated for people who have not been previously dx'd with migraine.  Also, botox has been used to treat head pain/migraine.   I have been doing botox for years, first given to me by my neurologist.  It stopped working for my migraines but it did at first. (I still do it because it still helps with migraine related vertigo - and cuz I like a smooth forehead now.  :)  ) Maybe it's something that would be safe and helpful for herceptin headaches.  Worth an ask.

If anybody gets treated for these heachaches, please let me know what they give you.  I believe I'll start my chemo in November and then herceptin a few months later so I will be researching until then. 

Ann's cancer blog: www.butdoctorihatepink.com .....multicentric/multifocal IDC/ILC+DCIS/LCIS/ADH Official dx? "Your breast was a mess." ~UniMastectomy/Chemo/Herceptin/Tamoxifen/Recon Almost Done! Oh wait. mets to liver 5/21/11 Now Stage IV

Dx 8/17/2009, IDC, 4cm, Stage IIa, Grade 3, 0/3 nodes, ER+/PR-, HER2+
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Nov 7, 2009 03:57PM moonwolf wrote:

I've had a constant headache for 35 years, (no one knows why for sure) - probably tension - I clench my teeth in my sleep, but it has been worse since being on Herceptin (had 7 sessions of it).  I do wonder if the cancer has gone to my brain or perhaps the Herceptin is making me clench my teeth more.  Does anyone else grind/clench more on Herceptin?  It's very worrying. My neck and everything above it aches and nothing helps.

Dx 6/2008, IDC, 1cm, Stage II, Grade 3, 2/17 nodes, ER+/PR-, HER2+
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Mar 12, 2010 03:13PM deetweed wrote:

I have always suffered from slight migraines with my period. Thes would consist of stabbing pain behind one eye, and and radiating pain from that point. It also causes stiffness in the neck. Tylenol used to work for me, but as the years went on, the pain got worse. Excedrin migraine usually makes the pain livable for the day, but I could not take it at night due to the caffeine content. I currently take imitrex with naproxen (treximet) for the migraines at night so that I can at least have a good night's sleep. It works wonderfully for me. However, I when I was first put on imitrex, I was informed that I could only take three a week, for a total of nine a month. I have not had the chance to ask my doctor if there are any alternatives. Since starting chemo and hercepten on March 1, 2010 I have had a constant migraine. (In fact, I have all of the symptoms I get when I get PMS each month, including acne and stuffiness. The thought of having PMS for a year terrifies me.) I did use some imitrex which helped, but I guess that I can not take more than the nine. I am getting the hercepten every week, so I just had a dose on Monday. My head is still killing me.

I am planning to see an acupuncturist on Saturday. It is not covered by insurance, but I am willing to try anything. I will also be talking to my doctor on Monday to see what else I can do or take for the migraines. 

 I will try to get back to let everyone know if the acupuncture helps.Depending on the migraine, sometimes chiropractic care can help. Chiropractors are often covered by insurance, so I would suggest trying that before acupuncture. 

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Mar 12, 2010 05:48PM navygirl wrote:

Since I don't see anyone that had the same resolution as I did, I'll chime in :)

I had them too, they also did MRI's - you'd think by now they'd believe this was from Herceptin and stop poisoning us with unnecessary MRI's, but I digress. I was not familiar with Migraines or how a headache could be so bad that you'd cry, vomit, hold your head and do your best not to move a muscle. It was insane, it gave me a new perspective on people who suffer from headaches. (I shamefully admit, as a manager I used to be annoyed when one of my people -who was prone to these, called in sick. I have since apologised -even though I don't think she knew I was annoyed).

I was given dilauded IV injections with an anti-nausea med added in. I had relief in 10 minutes. Later, when Arimidex caused them to return, with a host of other issues I was given Tramadol. It's supposed to be a synthetic narcotic so I expected it to have the same "buzz" effect; I was pleasantly surprised to find it gave me excellent pain relief with no buzz at all. This meant I could take it round the clock and not fear driving or working. Unfortunately, after 3 weeks we noticed what appeared to be severe mood changes and temperament issues. I had all of the signs of going through withdrawl even though the drug didn't produce a "high" for me. I would still recommend anyone to try it (it's cheap) but I would warn to watch out for the mental/mood changes as it can be habit forming even in the absence of a buzz.

I'm so sorry you are (all of you) having to deal with this, I remember how much it sucks! I hope some of the suggestions here help. 

life is short, play hard

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Mar 13, 2010 05:02PM, edited Mar 13, 2010 05:03PM by CoolBreeze

I am very pleased to say that herceptin has not made my migraines worse.  In fact, chemo sending me into menopause seems to have <knock wood> tamed the migraines.  The thing that gives me a migraine now is leukine.

I tried tramadol for my migraine.  I'm surprised it worked for the above poster - most people agree it doesn't work on migraine and it sure didn't for me. We are all different!  But, it does act on opiate receptors so you can get addicted to it.  

I'm glad, Navygirl, you now have an understanding of what we migraineurs have gone through. I have often wished just one migraine on my doctor, boss, friends - just so they know.  And, I wish people would not use migraine and headache interchangably.  So many people say they feel bad from a migraine when they have a simple headache.  As you have discovered, they are not the same.

I digress.  Even for serious migraineurs, like me, herceptin doesn't necesssarily cause one.  I am still on weekly herceptin and will try to switch to every three weeks when chemo is over to see if I can handle it.  But, if not, I'll but the copay bullet and go back to weekly to save my head.  :)

Ann's cancer blog: www.butdoctorihatepink.com .....multicentric/multifocal IDC/ILC+DCIS/LCIS/ADH Official dx? "Your breast was a mess." ~UniMastectomy/Chemo/Herceptin/Tamoxifen/Recon Almost Done! Oh wait. mets to liver 5/21/11 Now Stage IV

Dx 8/17/2009, IDC, 4cm, Stage IIa, Grade 3, 0/3 nodes, ER+/PR-, HER2+