Herceptin, Fatigue & Joint Pain

Ewdubs

I am so grateful to read everyone’s posts. I have been on Herceptin since August. I started white on taxotere and carboplatin chemo. I then had a double mastectomy in January and reconstruction in March. It’s. now May and I am really struggling with fatigue and joint pains. My pain radiates down my arms from my shoulders and my whole body aches and very runny nose. I go to bed after work every night now. I was diagnosed at 43 and went to spinning 3 times a week before, now I can barely go up a flight of stairs. I am trying to keep focused on how much Herceptin is supposed to reduce my reoccurrence chances. I will be done in August so I will have had a year. Tylenol and Motrin stopped helping months ago, so I stopped taking it. I feel like I am trying everything to cope with the pain last few months. I started Acupuncture which I think helps a bit. I also read somewhere that Claritin can help. I also take mistletoe shots to help my immune system. I think the Epson salt baths and showers and heated wraps help too. I also started vitamins of b12, cq10; calcium. I am so desperate that I even have a half of a marijuana gummie bear on really bad pain days (my friend gave them to me for chemo but now I am using them). They help and you are not high. I was more worried about getting addicted to a pain reliever. Hmmm so many things but in the end I just feel like crap. Herceptin must be cumulative. It’s basically been a year of feeling terrible, I am just trying to make it to August so MAYBE I can begin to feel better. I am going to try to slow my infusion down like other suggested. I have seen a difference since my surgery when my PS removed my port and I went to IV. Keep sharing

Brenda12

I thought my bone and joint pain was the Herceptin also, but my oncologists said it was the Letrozole he took he off, been off for 6 days now, hardly feel any pain anymore, the overactive bladder is also gone, stiffness in the my fingers NO MORE, he said there are always alternatives, so talk to your oncologist about the pain, It was unbearable, I could barely walk, not worth it if quality of like is like that, and I will not live on pain pills.

LKinKC

Hi Ladies,

I am so glad I found this topic. I am on Herceptin only right now for 4 more treatments. FINISH in April 2019. I also feel like I've been hit by a truck after the infusion for about 4-5days everything hurts especially joints. I also get very fatigued. It sure is not as bad as when I was on the full chemo but you begin to think your crazy when they tell you Herceptin alone does not cause side effects. Thank you all of you that posted on this subject especially the ones that are past their treatment. Good to know the side effects go away.

Best wishes to alk

Nhlady

Hello,

I'm not sure if you are still on here but I wanted to ask how long after your final herceptin infusion did you feel "normal" again. My last one was at Thanksgiving. Its now 3 months post and I still have awful pain in my buttocks that does run down my left leg. I'm 49 and feel 88 when I try to get up from my desk at work. I wobble the first few steps. I walk and do yoga but nothign helps so I was just curious when I could maybe look forward to me being me - thank you

Birchbark26

my daughter is on Herceptin and Perjeta and is experiencing all over body pain with the worst being from her shoulder down her arm. Her doctor said these medications don’t cause this but you all sound like my daughter so I believe there are some patients that are affected by i

astyanax66

Hi—I had to take a break from “cancer talk," just because I was getting obsessed and depressed. I'm trying to be more balanced now.

I definitely had pain with Herceptin. I started it weekly with Taxol in April '18 and then had it every 3 weeks starting in July. Even after the chemo and before aromatase inhibitors, I felt flulike about 24-72 hours, on the dot. While it's admittedly hard to tease out, I felt better within a month. I stopped in December because I ran out of leave time AND didn't have the copay. But I got in the equivalent of 8-9 months. They never infused it slower than 30 minutes—not enough room at the center. All Herceptin was done in 30.

For me, and I know everyone is different, the aromatase inhibitors were the worst, especially since my clinic blew off my pain. Tamoxifen isn't great, but I am able to move. Hope this helps,

Dee

Jduguets

Hello Mocity, I'm writing you to ask you something about your post in Herceptin Treatment. My mother has been in Herceptin treatments for 12 months about 2 years ago, and she got the same joint problems and progressively developed arthritis in knees and some discs in column (spondilitis). I would like to know how you fee in the present. Did you recovered from this pain?

Best regards

Jose

Chemogurl

I started my treatments in February of 2019,,I'm just had my third treatment in March and I'm in so much pain,fatigued and yes my legs hurt so bad I can barely make i

Moderators

Jduguets and Chemogurl, welcome to Breastcancer.org! We hope you find the support and information you're looking for here!

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