Constant all over body pain (m)...

greenacres · 11-04-2010, 06:16 AM

have been browsing these boards for weeks and have posted a few times. I am 41. I was diagnosed with Stage 1, Grade 3, Her2+++ IDC and some DCIS, Tumor 1.5 cm, ER and PR NEG last December. Had a partial mastectomy, 6 cycles of Carbo and Taxotere, 33 rads and now I'm continuing my Hercpetin through end of December.

I am following up on my post from a couple of weeks ago about my pain. I have expressed my concern to my oncologist about all over body pain. I have a 30 min drive to work and just getting out of the car is painful. My wrists, legs, back, neck, elbows, fingers, legs, hips, ache all the TIME! They just prescribed me some Tramadol yesterday. I am so so so so tired all the time and recently I have felt just a tiny bit nauseated at times.

My nurse asked if I had ever been tested for Fibromyalgia. Yes, I had and I was negative. My pain at that time, came from my neck for which I had a disc replacement in 2008. I do have osteoarthritis throughout my spine. I have not had any follow-up scans since all of this began. My first PET scan revealed all ok except for two areas of uptake in the nasopharynx and both sides of the iliac bones? If I'm not having anymore scans (so they told me) how are they supposed to monitor that as the report says (will be monitored with scans during treatment).

My question is, has ANYONE else experienced this all over body pain with Herceptin or any other cancer drug? I am so sick of it. Just curious. My other concern is after my partial, they found ALH (Atypical Lobular Hyperplasia) on the tumor which was "close to the cauterized margin" - what if that spread? What if what I am feeling is mets all over the place?

My mammogram is scheduled for 12/1 and I am anxiously awaiting that day as you can imagine.

Thank you. - Sandra

PinkGirl · 11-04-2010, 07:30 AM

Hi Green
It's pretty 'normal' to worry about all our aches and pains and to think they mean 'mets'..... that's the name of the game for us now. Talk to your onc about how you're feeling ... some oncs will give you scans for your peace of mind.

Taxotere and Taxol can cause all over body pain and so can Herceptin. What you're describing sounds extreme but we're all different. The pain I had from Taxol and Herceptin was handled with extra strength tylenol.

Hopefully others will chime in with their opinions.

StephN · 11-04-2010, 10:42 AM

Hi -
Taxotere was the hardest drug for me. Made me feel like someone had bludgeoned me I hurt so bad. Very flu-like. I was given Neurontin and it did help.
Some of these drugs like Carbo also have a "hangover" effect with the aches and pains.

It takes some of us longer than others for our bodies to stop having these painful disorders. Mild exercise should help, as well as relaxing in warm baths.

I also took joint compound supplement with glucosimine and chondroitin.

Let us know how it goes.

MaryAn · 11-04-2010, 10:43 AM

I would think you may need to give Fibromyalgia a look at again. That is what my FM sounds like. If I get too comfy I can't move as quickly which is why I walk around the infusion room when I get treatment. Having done years...7 years to be exact of FM research...I have come to find out that FM can be triggered by trauma...ie our surgeries to remove our cancer. Ask your doc to be retested. And is there really a test for FM at this point. When my Rhuemetologist diagnosed me the only way they were able to identify it is by ruling out all other types of issues so you may want to ask if you were indeed tested for FM.

PinkGirl · 11-04-2010, 11:10 AM

Sometimes people are diagnosed with fibromyalgia when their medical files are 10 inches thick and all the tests were negative. I don't think there is an exact way to determine if you have it or not. My sister has it and your pain sounds a lot like what she goes through with a 'flare-up'.

DiDi70 · 11-04-2010, 11:21 AM

Hi Green,

I also had a lot of pain in my joints and muscles and my Oncologist and Family Doctor told me this: Herceptin can cause joint pain and muscle pain, which should subside on week three of each treatment.
Taxotere caused me significant bone pain and when coupled with the Neulasta injection to increase my blood counts, the pain was unbearable for me in the 48 hours post-Taxotere/Neulasta combo. I was prescribed hydromorph contin, which helped tremendously.

Here's the information that I found surprising: Menopause can cause joint pain and stiffness due to the withdrawal of estrogen. Maybe your Family Doctor can offer some guidance regarding that?

What works for me is to keep on moving. Walking, stretching, yoga and also I find that before I get out of bed in the morning it helps to rotate my ankles and do a few stretches as it helps me feel less stiff and sore. Also, staying hydrated is important. Some nights I take Tylenol 325 before bed so that I can fall asleep without pain. It takes the edge off. I only have 4 Herceptins left and I am hoping that much of the joint stiffness and pain will abate when it's finished.

I am going to be seeing an accupuncturist soon, as suggested by a member on this board, to help me with the symptoms of menopause. I will be sure to post to let people know if accupuncture has helped me with joint pain and stiffness related to menopause.

Thinking of you and hoping that you feel better soon,

Didi

SunDiego · 11-04-2010, 11:26 AM

Didn't see it listed anywhere, so perhaps talk with your Onc about whether a biophosphonate (Zometa) might be good for you. I'd also demand a bone scan to check for mets. Even another PET/CT. It certainly couldn't hurt to make sure you have regular checking of tumor markers (CA 15-3, CA 27-29, CEA).

Becky · 11-04-2010, 01:01 PM

First off, I want to say that you do NOT have mets all through your body. Taxanes can do quite a number on our nerves (Taxotere or Taxol). I have a friend who did develop FM from the Taxol treatments but she is doing very well now.

Herceptin also causes body pain and someone mentioned the lack of estrogen which affects all premenopausal women who get chemo. I have not yet met one woman (even those in their early 30's) who did not go through chemopause (although some women rebound 6+ months after the last chemo and get their period back). You have been smacked a triple whammy on top of known bone degeneration (you did mention prior existing neck and spine problems).

Pain is no fun at all and it needs to get addressed. If the thought of mets is also strong on your mind, get scans done to knock that out of the ballpark (sometimes no matter what any doctor, nurse or friend says - you still can't shake that nagging feeling). However, I don't think mets are your problem but you do have a problem that you have to solve so you can move on pain free.

Mary Jo · 11-04-2010, 01:39 PM

Hello....

I just read your post and had to comment. Me and my hubby were just at the hospital where I received my chemo/herceptin (for a totally different reason this time - gall bladder) Anyway, we parked where we use to park when I had chemo treatments. As I got out of the car I said to my husband..."ohhh, I just had a flashback to when I use to come here for treatment. I remember when I'd get out of the car (after an hour drive to get their) and honestly, truly could hardly walk. OHHHHHHHHHH the stiff joints and overall pain I experienced) Now, (other than old age - I'm almost 51 ya know) the pain is all but gone!

I know it's easier said than done but PLEASE try not to worry. You do not have all over mets. You don't! Treatment will do that to you....not to mention the pschological effects of all you go through.

Praying God's peace to cover you......As time goes on, I guarantee your life will take on some sort of normalcy again.

Hugs....Mary Jo