done with herceptin and still aching?

Nora B. · 07-17-2007, 09:02 AM

i'm wondering if anyone else out there who is finished with herceptin is still having side effects, particularly joint ache/pain. i finished in april and my joint pain seems to have actually gotten worse, particularly knees and ankles; also now my feet feel swollen and sore constantly (like i'm 9 months pregnant and have been on my feet all day) and my fingers/knuckles have swollen so that i can't wear my rings. anyone else having similar problems or any advice?

suzan w · 07-17-2007, 09:40 AM

Hi Nora, I finished Herceptin in Oct. '06. I am still having achy joints. Also taking Arimidex and attribute many of the aches to that! It is getting better however! Usually advil helps tremendously!

Gerri · 07-17-2007, 10:15 AM

Hi Nora,

I saw your other post but thought I would respond here. I finished Herceptin in March and am now only taking Tamoxifen. My feet and ankles also seemed to get worse after I was done. Last week I could finally see my ankle bones but this week they are puffy again. My hip joints ache after sitting for a period of time and I have trouble moving. Not sure whether these are Herceptin or Tamoxifen related, or long term side effects from chemo. Some of my side effects have disappeared - the drippy nose, my eyelashes are staying put and my fingers have finally stopped cracking. I am hoping that soon ALL of the annoying side effects I have will disappear. Looking at what others have had to say I think it will probably just be a matter of time.

Best of luck!

Yorkiegirl · 07-17-2007, 10:54 AM

I finished my Herceptin at the end of August last year. To this day I still have AWFUL JOINTand BONE pain. I also still have the runny nose, and my vision is not the same.

I am not taking anything else that would still be causing this, as I am ER/PR-

My Onc. did tell me at my last appointment in June, that yes some people do still have the pain for many years after.

Sometimes the pain is bad, especially at night that Advil, Tylenol doesn't help.

I now can't Advil or Motrin anymore as I have GERD.

As to the finger swelling, I just had to have my wedding rings cut off as I couldn't get them off. I am having them resized. They were a size 5, and now the new size is going to be a size 7. SHEEZ !!!!

Kimberly Lewis · 07-18-2007, 04:25 AM

I woke up this morning after 4 hours sleep aching in all my joints- and I thought it was due to the Femara! Interesting to note it might be the Herceptin. I can still walk, do water areobics, kayak. Life even with pain is good huh?

KellyA · 07-18-2007, 05:58 AM

OK guys...changing the subject (kind of) a little here, but just wondering....has anyone who is now off the Herceptin lost any weight? I also had to take my rings off, and I have been an exercising FOOL for 3 solid months now (walking 6 miles a day, sometimes twice a day), and have only lost 2.5 pounds of the 15 that I have gained .....THIS IS RIDICULOUS!!!!!!!!!!! I am also eating like a bird. I am praying that most of it will just melt off when I finish in Sept. The only positive thing I can say is that I have been holding things steady at the same wieght for about 6 months now.

As far as the aching complaints...NOT WHAT I WANTED TO HEAR. I have been on every different regimen of Herceptin that we can do and suffered through most of it with awful joint and muscular pain. I would say its even worse that when I was on the Taxol. Was hoping that would disappear quickly after I was done.

It has truely been a "love-hate" relationship with Herceptin :-) .............

Love, Kelly

07-18-2007, 05:11 PM

We're damned if we do and damned if we don't, it would seem from study that came out today. Pay particular note to the suggestion that we lose weight. Has anyone asked us how we're supposed to do this? From what most people on this thread are saying, we've tried to lose those treatment pounds, but can't. Article below:

Study: Fruits, veggies don't keep breast cancer away

A diet high in vegetables and fruits apparently does nothing to prevent breast cancer from returning, according to a seven-year U.S. government study of more than 3,000 women.

Five daily servings of fruits and veggies are recommended for a normal diet.
Researchers noted that none of the breast cancer survivors in the study lost weight, leading some scientists to suggest that cancer prevention now needs to focus on weight loss and exercise. The study appears tomorrow in the Journal of the American Medical Association. Here's the press release.

"It sends us back to the drawing board," said Susan Gapstur of Northwestern University's Feinberg School of Medicine. She wasn't involved in the study but co-wrote an accompanying editorial in the journal.
The Associated Press and Reuters have the details.

Separately, U.S. scientists have found that eating grapefruit every day — even just a quarter of it — could raise the risk of developing breast cancer by almost a third, the BBC says.
Grapefruit is thought to boost levels of estrogen, the hormone associated with a higher risk of the disease, the British Journal of Cancer reported. The research involved 50,000 post-menopausal women.

sassy · 07-18-2007, 08:02 PM

As for weight, I lost about 20 pounds after dx, then gained it back along with about 5 more since then. The problem is, I look like I have gained at least 30 extra instead of 5. Very bloated, my belly has seemed to take on a life of its own! Hand and feet have swollen. Had to have all my rings sized up two sizes and now I can't get my wedding rings off my finger. I'm eating better, but I know I need to exercise more. Not walking like I was, and I should be doing more.

As for aches and pains, I've had lots. Neurontin has helped tremendously, but I think adds to the weight problem along with the Lupron and Arimidex. I am stiff in the morning, especially hands and hips, and also after sitting for a while. Everything gets much better after I move--feel great after I get going. So.....obviously I need to get going MORE!

I'm trying......

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WildCATblond