Bone Pain fr Herceptin - Page 2

Ginagce · 11-11-2005, 10:53 PM

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 · 11-12-2005, 12:55 AM

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 · 11-12-2005, 10:19 PM

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

Shannon · 11-13-2005, 07:37 AM

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 · 11-13-2005, 09:30 AM

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

sally · 11-13-2005, 04:56 PM

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 · 11-15-2005, 07:49 AM

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 · 11-15-2005, 10:02 AM

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

Gina

judy · 11-16-2005, 02:37 PM

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 · 11-18-2005, 01:32 AM

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 · 11-18-2005, 05:53 AM

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 · 11-18-2005, 01:57 PM

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!