Bone Pain fr Herceptin

[Ginagce]

Hello. Just found this site. So glad I did.

I am experiencing some pretty bad bone pain. Started Herceptin in June. Had already completed chemo in Feb.

Doc says it's probably from Arimidex...not Herceptin but I was on Arimidex for 3 months and had no bone pain until I started Herceptin.

Any and all comments and replies appreciated.

UPDATE: Forgive me I'm just learning how to use these message boards (used to chat rooms) and not sure how to answer what.

I thank you all for your input. Although I wouldn't wish this on anyone, it is somewhat comforting to know others are experiencing same effects. Appreciate the input from everyone.

[Yorkiegirl]

I also would like to see if any have had this problem as well.

I am having some bone pain as well, my Onc did say it could be the Herceptin, I have been taking Herceptin weekly since the end of August.


Vicki

[Unregistered]

I started herceptin in June '05. I've been having increased joint pain, hands , feet, knees sometimes elbows and hips. I was blaming it on Taxol or post chemo arthritis if there is such a thing. My onc. has offered no opinion as to etiology other than to order an EMG for possible neuropathy which was negative.
It's a big question still ...
Carol

[RhondaH]

though mine isn't really pain, but aches along my lower back. They didn't start until I started doing some new stomach exercises.

[Ginagce]

Thanks for your reply. Are you taking Arimidex or any other hormone therapy as well as the Herceptin or Herceptin only?

Gina

[Yorkiegirl]

<<<<

Thanks for your reply. Are you taking Arimidex or any other hormone therapy as well as the Herceptin or Herceptin only?

Gina>>>>


Gina, No I am not taking any Arimidex or any hormone theraphy as I am ER/PR Negative.

I am taking just the Herceptin only. I had dose dense 4AC, followed by dose dense 4 Abraxane, started Herceptin the next week after Chemo was finished.

[Karen t]

I have been on weekly Herceptin since August 2004 w/o associated bone pain. Only bone pain I've experienced during all of my treatments (4 rounds AC, 6 mos of wkly [3 wks on/1 wk off] Navelbine, 63 treatments of Herceptin, 1 dose Zometa, 2 doses Aridia) occurred after taking the Zometa that had many horrible side effects including widespread bone pain, continuous fever, etc. I have also had localized bone pain on my sternum due to tumors on it. Hope this is helpful.

[suzan w]

I have just started on herceptin-every 3 weeks-and arimidex. Within about 5 days of the first arimidex I started to experience pain in my hip. I already have osteoporosis so am aware of the bone thinning side effects of arimidex...my onc and I are at opposite ends of the spectrum on this. I cannot get in to see a bone specialist until mid-Jan. Don't know if the side effects of arimidex are going to be worth it. Wishing for the crystal ball...!!!

[Barbara2]

I started Arimidex in April 03. Have had on and off aches in the back since then. The "aches" sometimes feel more like a pain. It is most noticable in the ribs. Sometimes it is felt in the front ribs, and sometimes back.

I started Herceptin in May 05. The aches/pain are still in the rib area, but seem more pronounced since starting the Herceptin. For a while, it seemed the 5th day brought a more achy feeling (I take weekly Herceptin). But I had a treatment yesterday, and the aches have been quite noticeable today.

If it's bad enough, I take a Tylenol, and try not to worry. The Tylenol seems to help some.

About a year after starting the Arimidex, my onc and I were discussing bone aches and he commented that he thought the aches would go away after my body got used to the Arimidex, but that hasn't happened. Maybe he was just making an assumptin.

Blessings, Barbara

[doh2pa]

Hi All,

I check this site a few times a week and was relieved to read today that other women out there have bone pain on Herceptin. I am on weekly herceptin, and 3 out of 4 carboplatin and abraxane. Just got my 5th treatment in a 24 week regimen Tuesday and was so upset by back pain last night in bed that I hardly slept at all. Of course, every bit of pain equates to a met in my mind but the pain moves around sort of across the back of my rib cage. Had scans (PET, Bone and CAT) just 6 weeks ago showing two liver mets but no bone mets and my rational mind tells me it's not a progression but I feel ruled by my irrational emotions lately. Anyway, I will go take two tylenol and try to GET A GRIP.
This site is a constant source of comfort to me. Thank you all for your honesty and support.
Donna

[kristen]

I had the same thing, and the doctors told me no it was NOT the herceptin. But my study nurse told me that another lady who was on the study was recieving Herceptin and she stopped taking it, because she was convinced it was the Herceptin that was causing it. Her pain did stop after taking it. I however just took pain pills and when they stopped giving me those, I just indured it. There was no way I wasn't getting the only thing I had in my arsenal that I could take for HER2. That was just her, I don't know if it was or not. I was also on Carboplatin and Taxotere. I did the neuropathy studies and thank goodness, I had none. I am 2 years NED and with no pain now. It did take a while for it to stop. But if it was the Herceptin and I don't know that it was, I am NED because of it, I would do it all over again.

I know it stinks to be hurting and I have no answers for you, but I did see a great massage therapist who could get it to stop hurting for a while. Hang in there, maybe we will find out more on side effects on this next meeting that is coming up?

[Ginagce]

Thanks Kristen. Appreciate the information.

I am not considering stopping the herceptin. Like you I'm going for the gold and the herceptin is the only thing available to battle the her2. But my oncologist thinks it's strictly the Arimidex that's causing the pain and is talking about switching me to another drug. So I'm trying to find out if other women are experiencing bone pain with the herceptin too. Doesn't seem like the medical community is willing to concede that it may be the herceptin yet.

God Bless you in your battle!

Gina

[Sheila]

Gina

I have been on Herceptin for 2 years, and I think the pain I have is from arthritis....I had it before the Herceptin. I do know that when they switched my Mom from Tamoxifen to Arimidex, she experienced awful joint pain...after 2 months they had to take her off it....she was miserable....
Side effects can be different on each of us...just wanted to let you know of her experience with the Arimidex....maybe if you switched to Tamoxifen with the Herceptin, the pain would go away, and you would know whether it was the Arimidex or the Herceptin.....Just a thought....Some people say Tamoxifen & Herceptin are not a good combo, but I have several friends who did great on the combo.

[Unregistered]

I started getting some bone pain after my 2nd dose of Herceptin (1 dose every three weeks). I had completed dose dense ac and T at the end of June and started, Herceptin the beginning of July. My back pain started in August and now elbow pain in October. I have had a bone scan, to rule out any pathology and only just now, started Arimidex. So I cannot blame it on the AI. My doctor said it could be post taxol pain which is very common and can last up to, two years after treatment.

Karen

[Lauriemn]

I have bone pain in my hips. I am only taking Herceptin and I have no history of arthritis . I thought it was from the taxol that I finished in Aug.
Laurie

[Barb]

I think the bone pain could be from the Arimidex. I was on Arimidex on and off for 18 months. I say 'off', as I had so much bone pain that it became intolerable so I had to have breaks from it. It seemed to accumulate in my system. Yet, I know others who are on Arimidex and have little trouble with it. I have also been on Herceptin for 2 years now and have no problems with it, other than extreme tiredness half way through my day.

[jessica]

Hi all~
Just wanted to share my experience w/Herceptin & that awful whole-body-arthritis! I just had my 2nd dose of q3week Herceptin last week.I've been feeling so creaky & achy for the past 6 weeks-bones feel like they're just grinding on each other from the base of my neck to my sacrum, across my pelvis, even my feet-when stand up to walk after sitting for any length of time, it takes me a couple of steps before I'm up-right & my feet & ankles snap,crackle & pop!
It just occured to me today the reason...that triple dose of Herceptin! I experienced this same thing 2 yrs ago-after 49 weeks of weekly Herceptin+chemo, I was NED! I was so excited that I would be on Herceptin q3weeks & not every single week. After my first triple dose, I experienced flu-like symps for ~24 hrs & then the achy,creaky, arthritic feeling settled in.Tylenol didn't really help, hot baths, massage, stretching, nothing! After feeling this way for ~2 1/2 weeks, the achiness subsided...just in time for my next triple dose!
I teach Pilates full time & feeling the way I was feeling made it virtually impossible for me to teach. I remember lying on the floor, prone, setting up an exercise & I could barely lift my head my neck & shoulders hurt so badly!Additionally, I got these little bumps all over my torso. Ultimately, I had to go back to the weekly dosing b/c I was miserable. I decided I'd rather go in for treatment once a week & feel good, than have the "freedom" of the q3week regimen & feel crappy for 2 1/2 weeks!
After my recurrence last September ('04), my Herceptin+chemo treatments were again weekly. Since NED again (YEAH!) 8 weeks ago, we dropped the chemo & switched to the q3week Herceptin. Since I've been on q3week Herceptin, I've got those little bumps again AND awful achiness. I feel like some one stuck me in a little box & shipped me across the ocean!
I'm going to call my doc on Monday to talk about changing my dosing schedule. I really do like the freedom of the q3week dosing, but I can't handle the physical discomfort! Maybe I'll see if things are better on the q2week dosing...I'll keep you posted!

[lu ann]

Dear Jessica and others,

Do you think that if the infusion time was lengthened the side effects would be less? When I was treated at Cancer Treatment Centers of America they used what is called "fractunated dose chemotherepy" where they divided a powerful dose of drugs into smaller doses over several days. This approach supposedly exposes the cancer cells for a longer period of time to maximize their efficacy, while reducing unpleasant side effects experienced with larger doses. While I did not have chemo there, I knew many who had with positive results. I know most hospitals probably won't infuse patients over several days, but they can increase the drip time and make some difference.

I too have been having bone pain that I was blaming entirely on the compression fracture in my back. I'm kind of thinking that it might be the herceptin and the combination of other drugs I'm on.

Blessings, Lu Ann.

[lu ann]

I wondered myself when I first came on board.

Blessings, Lu Ann.

[Ginagce]

And please do keep us posted.

Take care.

Gina

[Ginagce]

Barbara, NED is no evidence of disease.

Best to you!

Gina

P.s. Don't ever be afraid to ask questions. If there is anyone out there who has nothing left to learn, I would be surprised.

That;s why these sites exist.

[Gina]

Wow, this will be interesting...another Gina on the site...WELCOME and tell your onc that Herceptin is NOTORIOUS for bone pain, but the good news is that usually means its working great!!! For the holidays buy your onc the book, The Making of Herceptin...but of course, smile..you sneak - read it first...

Best of luck to you,
Gina L. Popp
Gina@Comcast.net
Original DX in 1997; STAGE IV mets in 1999; 6 years and 7 months experience with Herceptin; This month marks my 8th year since mastectomy and I am STILL here...smile.

[Ginagce]

It's no evidence of disease. I'm still learning too Barb. Best to you!

[Shannon]

WHEW!!!! Im sooo glad that someone else is having the bone pain... when I asked my doctor about it... he looked and said well a few reported bone pain, but not many... well, nothing about me and this cancer has been NORMAL....
I was on AC / taxol and no hormone therapy.... to me, the bone ache was icky on Taxol, appeared to still there, but not as bad, then I went on herceptin in June... I only got 14 weeks of it, then my muga score came back below 49 so I got pulled. The aches are even worse with weather change.
Im not sure other then vikoden what to do... but Im glad to have you ladies to bounce things off of!

[sassy]

I've had that whole body stiffness going on, especially in neck, but has moved down more into back. I thought it was left over from taxol, but wonder too if it is the herceptin. Finished taxol in August. I've been doing herceptin weekly, but will switch to three week dosage after Thanksgiving. This gives me a heads-up to watch for changes in bone-joint pain.


Sassy
________
VelvetDream cam (http://camslivesexy.com/cam/VelvetDream)

[sally]

My knees always hurts the day after Herceptin. I also have bone pain in the back/scapula area. I am also on Femara which causes bone pain. I think alot of the bone pain can be from menopause. I'm 37 and have been postmeno. for over a year. The hot flashes are still coming on strong. Sally

[Yorkiegirl]

I am going to go and buy this book. Does it say in the book about Bone Pain being a problem? My Onc think's it's all in my mind, and I know it isn't as Herceptin is the ONLY thing I am taking.




<<<Wow, this will be interesting...another Gina on the site...WELCOME and tell your onc that Herceptin is NOTORIOUS for bone pain, but the good news is that usually means its working great!!! For the holidays buy your onc the book, The Making of Herceptin...but of course, smile..you sneak - read it first...

Best of luck to you,
Gina L. Popp>>>

[Ginagce]

Great Yorkiegirl. Please do let us know what you read!

Gina

[judy]

Hello All:

I began receive bi-weekly Herceptin infusions in May after completing 4 rounds of AC and 12 rounds of Taxol. I had primary HER 2/neu 3+, ER-/PR- breast cancer with 3 positive nodes. I underwent double mastectomy in September.

I had some bone pain with Taxol, but began experiencing much more significant lower back pain after beginning Herceptin. The pain I've experienced seems to be lower than that reported by most of you. Mine is in my butt, similar to sciatic nerve pain. It becomes very intense, particularly when lying down. Sometimes I have difficulty moving from lying on my back. I have to draw my leg up to my chest and then slowly roll to one side. The strange thing about this pain is that is can continue unabated for many days or weeks, then very suddenly disappear for awhile. While it is generally on the left, it can also be on the right -- but not on both sides at the same time. My oncologist believes strongly that it is not a cancer recurrance. He has not had any other Herceptin patients who have exhibited bone pain of this intensity and, thus, thinks it could be a lowe back problem (i.e. disc or stenosis). I have the published results of the Herceptin trial and read through the adverse events. I also called Genentech and discussed the issue with their medical staff. As it turns out, of the women in their clinical trials, 22% of the group that received Herceptin alone (and a larger number -- I believe about 30% -- of the group that received Herceptin with chemo, experienced "lower back pain." Exactly what -- and where -- that pain was, I do not know.

However, my oncologist wanted me to have an MRI to learn if, in fact, there is a disc/vertebral issue. I was scheduled to have the MRI. Two weeks prior to the scheduled test, however, the pain suddenly disappeared and did not return for almost two weeks. Therefore, a couple of days before it was scheduled, I decided to cancel the test. Sure enough, three hours later the pain returned! It only lasted for a couple of days, however, so I have not, as yet, rescheduled. I just don't want to deal with any more medical issues right now. If we're sure it's not a recurrence, I don't really want to know what it is at this particular point in time. I'm very busy with my job. It's a bit difficult, because it entails a lot of travelling, which is hard when my back hurts. However, I'm pretty good with pain and think I can get by for a while.

I thought you all might be interested in my Genetech conversation and thought I would post this information.

I'm still not absolutely certain it's the Herceptin. I had an infusion yesterday, and the pain did not come roaring back. I guess I'll find out if, and when, I do the MRI.

Good luck to all.

Judy

[lu ann]

Dear Judy,

What you have described might be sciatic pain that could be treated with chiropratic adjustment. I was having similar pains years ago that were healed with a few adjustments. Just make sure you get permission from your oncologist.

I know you don't want to deal with anymore right now, but if you don't get this checked out you might regret it. I was origionally diagnosed with stage 1 bc in 1991. I went years without symptoms of reocurrance. I started having subtle symptoms in 2000 which I tried to ignore. Feb. 2004 I was diagnosed with mets to my spine, pelvis, and mediastynme.

The pain you have descibed to me does not sound like the pain I experienced with my bone mets. The pain never went away. Chiropractic adjustments did not help.

Take care and God Bless you, Lu Ann

[Lauriemn]

Could you describe what kind of pain you had with your bone mets. I have been having a pain in my right hip and I am going in for a bone scan next wed. I know the odds are that it is just left over from the taxol, or from the herceptin I am taking, but now starting to worry it could be mets. Thanks, Laurie

[StephN]

Hi ladies -
Well - count me on with the bone pain. After the Taxotere I was a mess with pain, but that went away.
Then mets occurred - rampant in liver and starting into leg bones. I had little pain until getting into weekly treatment of Taxol, Navelbine and Herceptin. This was manageable and I did take Neurontin (as with the Taxotere) for NERVE pains.
Remember - these drugs are hard on the nerve sheaths even if we NOT have true neuropathy. I usually managed with Naproxen/Aleve.

I have been on three-weekly Herceptin now for 4 years. This and Zometa. A couple months ago I noticed a pain and stiffness in my hip and upper thigh areas. Exercise seems to loosen it up, but it comes back from sitting in the car or anywhere too long.

The nurses at my cancer center had this to say about side effects and what the drug companies say. The nurses are very carefully noting all complaints from the patients and say that what was reported by patients in the trials does not seem to correlate now with what they are seeing "on the ground."
Seems that Herceptin does seem to go with bone pain in more instances than the drug company says.
This is why I have stuck with the 45 minute infusion time for the 3-week dose. I seem to feel better afterwards and not so tired the next day.
Why I have this fairly new bone pain, I am not sure, as I have had blood tests twice in the past year checking for reasons for my connective tissue flareups. I am negative for any arthritic blood markers.

This may not be much help, but is just the experience of another battle-hardened BC survivor!