??Aches and pains while on herceptin alone

I started herceptin in June of '05 and will be on it for a year. Ive noticed since it started, I've had no bad side effects such as I had while on standard chemo. However, I have noticed increased general aches pains, and stiffness esp. in my joints-- hips, knees. feet, elbows and hands. At first I attributed these symtoms to the residual effects of Taxol, But I finshed my 4 rounds of Taxol in August of '04. I still do have some minor numbness on the tips of my fingers.
But the stiffness stuff has me stumped. Now I attrubute some of it to age related arthritis ( I'm 65 ) though I've never had arthritis pre cancer and treatment. ( dx. 3/04 )
I'm wondering if any of these symptoms are related to the herceptin-- my onc. really doesn't know or comment on it.
Curious to know if others have had the same experience.
Carol

[juanita]

I have noticed the same achiness, but didn't do taxol. I had cmf. I just put it to arthritis, though I'm only 42. Some mornings it's hard to come downstairs when I get up. The days I have herceptin I still get the chills afterwards, but they give me benadryl with it so I sleep for awhile and then I'm fine. Juanita

[Gina]

after taking herceptin alone, it is quite common...it is usually a very good sign that it is really working...it is also rather normal to get a fever and chills and to feel a sudden urge to sleep--about 6 to 8 hours after taking it.

I think the fever is a very good thing and should be promoted not hampered...therefore, I recommend not taking any pre-meds with the herceptin and not taking any fever reducers or pain killers after... I am also not in favor of using benadryl at all...as it dampens immune response rather than revving it up at a time when you need it most. Of course, not every one agrees and each person has to chart their own course.

Gina
(Dx in 1997, mets since 1999, use Herceptin alone...no chemo or rads since 98)

[Cheryl E]

If you are taking any AIs (femara or arimidex), they can cause joint pain/stiffness.

[Rupali]

Gina, they give me Tylenol before Herceptin. Do you think that can also bring down the immune system in some way. I pushed them to stop giving me benadryl and they agreed.

Let me know your valuable thoughts on Tylenol.
I always get a cold nose for some reason from Herceptin but never got fever.

[fourboysmom]

Dear Gina, I wrote a post not too long ago about the same thing. I am on Herceptin alone and feel so achy in my hips and other joints. I've just gotten used to it,I guess. I made sure my bone scan was normal.

Love, Janet

[Yorkiegirl]

I certainly have bad aches and pains as well. At first my Onc didn't believe me, then I called Genetech and talked with them, my ONC was called as well, needless to say I was finally beleived. He had said that no one else using herceptin had those reactions, but I said everyone is different. So I do have a pain med to take, and ONLY take if I really, really need it. I will be the big 50 this year, and feel like I'm 80. LOL

thank you all for your replies.
Another question-- do you ever regain your full energy level after chemo, rads and now herceptin. I'm a pretty active person but I get so fatigued at times I just have to rest more. Some mornings I feel as though I haven't slept at all. ( that is true , sometimes !!)
I go to the gym, walk, use the nautilus, swim, etc. But I feel as though I'm always pushing myself.
Anyone else feel more fatigued and need more rest than usual ??
Carol

[Yorkiegirl]

No, I have yet regain all of energy. I finished my Chemo on Aug. 15, 2005 and started Herceptin the next week. I am always so very tired when I get home from my infusion for at least 48 hours. I guess it's part of the whole picture and hope it will soon get better.

[Mgarr]

I turned 40 this year after dose dense 4 AC 4 Taxol (which did cause some neuropathy) but onc. cut last 2 doses in thirds and most of this has cleared up. But since being on Herceptin alone I have a great amount of muscle and joint aches I never had before. I am also active and I thought my body was just recovering from the past years treatment but I am starting to believe it is from the Herceptin. I will see my onc. soon will ask if side effects like this have been reported. I am on no other medications.

Mary

[Sandy H]

I am on Herceptin weekly. I do have muscle aches and joint stiffness and I blame it on the taxol because its that very deep bone ache. I know chemo can cause arthritis or even make it worse. As I have posted here before I am able to manage my symptoms by using flaxseed oil either by capsules or from the bottle. I don't take any medications over the counter or prescriptions if I can help it as it all brings down the immune system which we don't need. I have used glucosamine capsules before the flaxseed and that worked for me. I like the flaxseed because it helps my dry skin, hair and nails. I am ER/PR neg. for those that are pos. you may need to be careful of the flaxseed. I would probably do the glucosamine instead. Each person has to see what the dosage is that works for them. I hope this helps. hugs, Sandy

I too have noticed just a little bit of achy joints with Herceptin in the hips and also my back aches a bit. However, I have only been on herceptin a few weeks so not sure if achy due to something else of Herceptin. RP

[juanita]

I have the fatigue too and wonder if it will ever go away. I try to work out every day, but some days it's hard enough just getting out of bed. And my job gives me a pretty good workout every day. The pain in my lumpectomy site still bothers me too. And it's been almost a year and a half since the surgery. How long does that last?

[RobinP]

Just wondering if anyone has had back pain after first starting Herceptin? Seems my pain began shortly after my first dose; however, I have been moving some large boxes lately. Hope it is just sketal-muscular and not related to bc or herceptin; we'll see how it feels in a few weeks.

[Mgarr]

I do not have back pain just general achiness I am sure it's just the moving.

Sandy- you mentioned flax seed oil is this different or in addition to a diet w/ flax seed? I try to follow Diana Dyer's anticancer diet, so I get my flax seed in my "Standard Soy Shake."

I am confused as to what supplements to add to my diet for the best protection. I am new to the site so there may have been discussions that I missed.

THANK YOU all for being here.

Mary

[Barbara2]

I have a hard time filtering out where my aches may be coming from. I finished chemo in March '03, and have had body aches from that time to the present; mostly in the back and rib area. My ribs are quite tender to the touch; possibly my fibromyalgia contributes to those muscle/tissue type of aches. The joints are stiff, but that could be due to my age-55- as well.

I have taken Arimidex since April 04, and thought that might be contributing to the aches. But my onc says that over time (like a few months) one's body should adjust to the medicine, and those side effects should diminish.

I started late herceptin in May'05 and the aches stayed about the same; do experience some tiredness for a couple of days after treatment.

In Oct.05, I started Actonel due to bone loss from the Arimidex. The aches have increased in intensity and area since starting the Actonel.

With such an assortment of medicines and treatment, how is one to know what causes our discomforts? Someone asked about fatigue; I had a great deal of fatigue for about a year's time after chemo treatment. Discovered that some of it was due to the nightly Ativan I was taking for sleeping, and the Celebrex for body aches. So you may need to see if some of your fatigue is due to medications. Even now I have days of good energy, and days of low energy.

Quite a few people have posted here questioning body aches due to Herceptin. In the clinical trials, I wonder if (some) trial participants can really sort out side effects in a way that is accurate. When I finished treatment, my head was in a big time fog for quite a while. I question how useful and correct my assessment on side effects would have been. The Herceptin is continued directly after the big knock out drugs have been given. Can a participant know what is lingering from the chemo vs. what side effects are coming from Herceptin? It would be hard to know.........

I also have a lot of body aches. I finished 4AC/4taxol in Aug. 05. I had such severe bone pain with taxol I just contributed it to damage done. At the ripe old age of 34, I know I now have some arthritis. Now that I think about it the pain has been different since starting herceptin. I have not had fever or chills since first starting herceptin last yr. Does this mean it may not be working?
MichelleI

[Lisa1962]

I was bumped into menopause via Lupron, given Femara, Herceptin, and Zometa all at once -who can tell which is causing my REALLY bad muscle and joint aches? It could be the dramatic drop in estrogen too. Right before starting all this stuff I'd plop myself on the floor to play with my son and pop right back up again

Now the thought makes me cringe - ouch!

Granted - because of this I went from a Stage IV diagnosis (liver and bone mets) to NED after only 2 HErceptin treatments - so I can't really complain.

Well, I do complain - but I am grateful that something is working - even if it hurts.

[dskdrive]

I still have pain in my lumpectomy site also. I had surgery in Sept. 2004. I am now on a year of herceptin and have been on Arimidex since Apr 05. I have joint pain especially in my feet. If I sit very long my hips and knees stiffen up also. I am almost halfway through the herceptin now but I feel more fatigued as time goes on. I will be so glad to have a break from the meds!!! I had one good month between finishing rads and beginning Arimidex that I felt really good with energy. Has anyone every taken a short break from arimidex or tried something else that is not so hard on joints and energy level

[Barbara2]

dskdrive, I don't think you will want to take a break from the Arimidex, as it may possibly be helping you fight recurrance. The relief would be welcomed, I know, but you would wonder if it is worth taking that chance.