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, 06:08 AM

Kelly,

Same problem with the weight, although I don't exercise. But I gained close to 15 pounds, most of it in early days so it hasn't changed in many months. I have one more herceptin to go (August 7) and I'm finished, and like you, I'm hoping the pounds will melt away (and the hair will grow). Ten months since ending chemo and I have about two inches of hair. Very curly but not a whole lot of it!

MJo · 07-18-2007, 06:58 AM

My 40 pound didn't melt away, but I'm not working as hard at it as you ladies. I guess I have to bite the bullet and go to weight watchers, because I can't do it on my own. I stopped Herceptin in November 06. It took about 4-5 months before I felt I was emerging from treatment. I feel like my old self today, 8 months later. I'm not a patient person, but it was forced on me by treatment! I am a gardener, and am back to carrying 40 pound bags of mulch. (Since I don't have children, it's the closest I get to carrying a small child.) I have body aches due to Arimidex, but unless new studies say I can go off the med before 5 years, I will put up with the arthritic-like pain.

suzan w · 07-18-2007, 07:14 AM

oh, yes...the weight...gained 15 lbs through all of this (might not seem like much, but for me 15 pounds is alot) and NOTHING I do makes any of it go away. This is maybe 'too much information' but I thought I would at least have lost a pound or two due to my bilateral mastectomy...

Gerri · 07-18-2007, 07:55 AM

I had lost 16lbs prior to my bc diagnosis so imagine my surprise when my onc told me that instead of LOSING weight while going through chemo I would probably GAIN (I was looking for at least ONE perk). Well 20lbs later I am still waiting for it to start back down. I eat very well - lots of fruits and veggies - and really limit my intake on the food that got me into trouble in the first place. The one thing I do need to incorporate is more excercise and I am finally feeling strong enough to get that going. This past week a few people have told me that it looks like I have lost weight and I actually fit into a pair of jeans that I couldn't a few months ago. I noticed that my middle section (right above my waist) has lost some of the bloat that I had acquired. Maybe I'm on my way down at last!

KellyA · 07-18-2007, 07:57 AM

Hee Hee Susan......I had to laugh when I read that little bit about losing weight with your mast.- I have held my implants "responsible" for a couple of my pounds, as surely they must weigh a little more than what I started with...... :-)

Heart Sutra · 07-18-2007, 09:15 AM

Kelly,

The weight gain is driving me crazy!!!! I've gained 20lbs through is process. I also watch everything I eat and am starting my workouts again but can't lose a pound.

My onc. says "you know what to do" (as I'm a personal trainer) but the onc. nurses at my facility all tell me it's the treatments, it will change and the weight will come off when you're done.

I just hate it. I have never had a weight problem in my life. It's very depressing not being able to fit into my jeans or my bras. I will be doing my 2nd reconstruction surgery the end of august, as I can't wait anymore for at least one thing to be done with.

As far as the joint pain.....on the bad days Vicodin works wonders!!!

Yorkiegirl · 07-18-2007, 10:59 AM

Besides all the aches and pains that haven't gone away after almost a year, my weight still has not come off. I gained 20 lbs, and and am so sick of it. Nothing I do seems to work at all.

juanita · 07-18-2007, 12:24 PM

Been a year since I finished herceptin and the weight still hasn't come off. I did lose a few pounds, but then stopped losing no matter what I did. I am watching what I'm eating but not working out as much as I should. The pain is better than it used to be. There are still days though that it's very hard to get out of bed.

Mary Jo · 07-18-2007, 01:41 PM

I gained 17 pounds while going through chemo and herceptin. I am happy to report that now that it's all history the weight has come off as well. I have been finished with herceptin for 9 months now and all of the weight is gone. I will admit that I've changed my eating some. Better than before cancer but not perfect yet

and I do exercise religiously. Four to six mile powerwalk/jogs 6 - 7 days per week. However, I was doing that long before breast cancer and did manage to walk/powerwalk/jog at least 2 miles per day (most days but not every day) while going through treatment. What I ate though during treatment wasn't always the best, that I admit.

So long story short.........................after I bored you to tears with my story..............................my weight is off............................and I'm darn happy about it.

Hugs to each of you..........

Mary Jo

Barbara H. · 07-18-2007, 04:26 PM

I do not believe that have aches and pains from Herceptin, but I think it is just my age. However, I have taken Gina's advice and find that a warm bath with epsom salts before I sleep helps me to relax and relieves the joint pain.
Good luck,
Barbara H.

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