Help! My hand and foot joints hurt!!!

[NEDenise]

Help!
My finger and toe knuckles are swollen and hurt! I've had arthritis for years...but this is worse...not excruciating, but really, quite uncomfortable. (I finished Taxol about 3 weeks ago; now I'm on Herceptin q3weeks for a year)

I feel like I've gotten old overnight. And while my fondest wish is, to actually have the chance to grow old...I'd like it to take a long, long time! LOL

I've tried NSAIDs, which always worked for arthritis...and they have no effect on this pain. Tried ice packs, and they helped while they were on, but my knuckles ache again within a few minutes of removing the ice.

Since you ladies warned me to take Claritin before Neulasta, and Zyrtec for my Herceptin-induced runny nose...I'm hoping some of you have found just the right thing to stop aching finger and toe joints.

Thanks, Ladies!
Denise

[Laurel]

Are you taking Vit D? Have you had your Vit D levels drawn? I also suggest supplements that decrease inflammation such as Fish oil.

[NEDenise]

Thanks, Laurel!
I do take some vitamin D...how much are you talking about?
I'm pretty sure I'm not allowed to take fish oil because it effects some chemo...but I'll check with the dr....this pain is starting to interfere with my daily life. I can't move my fingers without pain...forget about opening things, or carrying things.
The foot pain...I can ignore...but this hand pain has got to go!!
Again, thanks for your help!
Denise

[caya]

Denise -

A study just came out yesterday saying that Omega 3 fish oil supplements can adversely affect chemo - so don't take them. My onc. forbid me to take any supplements at all during chemo -
Have you tried Tylenol for muscle aches and pains or Tylenol for arthritis - again, check with your onc.

I take 4500 units of Vitamin D daily, but this was after I had completed chemo.

A nice warm bath with Epsom salts should help.

all the best
caya

[NEDenise]

Caya,
Thanks for the reply. Unfortunately I've tried warm compresses and soaking for my hands and the swelling got worse. Sure did feel good though!
The search goes on...
Denise

[NEDenise]

Update...
More Neurontin did the trick. I feel my age again!
Have a great day!! I will!
Denise

[NEDenise]

Okay...
I don't mean to whine. Okay, I guess I do.
The pain, I can accept, but the swelling has me spooked.
I'm worried that I seem to be the only one on this board that has this.

My onc. in "not concerned".
The Herceptin Hotline nurse "never heard of this side effect".

My relief from Neurontin was short-lived.
I've now added Tylenol, round the clock. (can't use advil...surgery in a week)

Onc has strongly recommended against any sort of supplements except the calcium and vit.D I take for osteopaenia, and a multi vit.

Anyone heard of any of our other HER2 sisters with hand swelling/pain while on Herceptin only?

I don't mean to be impatient, but I've read every Herceptin, joint pain, and side effect post on the site, so please don't post a link to one of them. The answer isn't there.

Thanks so much for letting me get this off my chest. I appreciate your support!!!
Denise

[Jackie07]

I'm sorry you are feeling so much pain. You've mentioned about past athritis - can you request for a consult with a rhumatologist about the pain? My experience has been that whatever ailment I'd had before, cancer treatment would aggrevate it. Please ask to see a specialist.

[BonnieR]

I agree with Jackie. Sounds like your arthritis is being aggrivated. (Just as you are being aggrivated!) . It is such a quality of life issue, you onc SHOULD be concerned and refer you to someone who can look into it.
Keep the faith.

[NEDenise]

Jackie and Bonnie,
Thank you both for being so nice to me (especially when I'm aggravated!!)
I'm having a bilat. Mx + DIEP flap reconstruction on Friday. Maybe I can see a rhumatologist during my convalescence. It sounds like I won't be doing much of anything else.

After that, I'll be having radiation. I wonder if that might not aggravate my arthritis too...so a consult seems like a pretty good idea. Peace of mind...knowing what it is...would certainly be welcome.
Thanks again, both for the good advice, and the tolerance of my crankiness.
Be well!
Denise

[BonnieR]

We specialize in crankiness here!
Keep the faith.

[ElaineM]

I hope you feel better. I hope you recover well from surgery. Take good care of yourself.

[sarah]

Hello,
you state this "
Onc has strongly recommended against any sort of supplements except the calcium and vit.D I take for osteopaenia, and a multi vit."
Did the onc say this since you finished Taxol? Did he say this in conjunction with Herceptin? Taxol and Herceptin are very different so I'm curious.
thanks
Sarah

[rhondalea]

This is something of a long shot, but you might want to have your thyroid checked. Steroids interfere with thyroid metabolism, so it may be that the dexamethasone you received with the earlier chemo has left you with a wobbly thyroid. The fact that you have arthritis is a clue that your thyroid may have been struggling anyway.

I say this only because when I have been undermedicated on thyroid hormone, I have experienced the pain and swelling you describe. (And the steroids are wreaking havoc with my thyroid right now, which is why I thought of it as a possibility.)

As an aside, I now regularly soak my feet in vinegar, and although I was expecting foot problems with Taxol (because I started having foot problems with AC, specifically pain and swelling, albeit not in the joints), my feet are doing fine. For this reason, I started soaking my hands also, and they're fine too.

I have no idea if this will help with your pain, but because it's innocuous, it might be worth a shot.

If you want to do it with your hands, it's best to soak a pair of gloves--I use both plain white gloves and a pair of old microfiber moisturizing gloves--in the vinegar . You can them pull on a pair of rubber gloves over the soaked gloves and go about your business. I usually keep them on for about 15-20 minutes (or until they start to itch or sting), then rinse and moisturize. Your hands will look and feel like you've had them in water for hours, but the sensation and appearance subsides in a short time.

Another possibility is the use of a topical capsaicin cream like Zostrix or Capzasin (or one of the many generics). The only problem is that you can't wear gloves over it, and until you wash it off, anything you touch is going to burn. I have stories.

Re fish oil, I had understood that the contraindication is specific to platinum-based chemo drugs, so you might want to ask if you can take it with Herceptin. Research indicates fish oil has a profound effect on joint pain, so it may go a long way to resolving the problem.

I find pain in the hands to be almost incapacitating, so I hope you find a solution soon.

[Jean]

Denise
Have you tried Cosamin DS?
After 2nd week I had great results.
One in the AM and one in PM

Jean

[NEDenise]

Wow! Now we're cookin'. Great ideas.

Sarah,
You know, we haven't discussed supplements since finishing Taxol. I will definitely mention it again and see what she says. Thanks for the tip!

Rhonda,
Good catch!! I never even thought of my thyroid. I have been hypothyroid for years, and take meds for it. I will ask my doc to run the thyroid tests with my next blood work. Oh, wouldn't it be great if it was that easy to fix!! (I'd keep my fingers crossed till then, if it didn't hurt so much!)
Would the capzasin interfere with clotting? I know some other arthritis creams do. (I don't mean to put you on the spot...you just seem so knowledgeable...I thought you might know.) I love the idea of a topical treatment, rather than swallowing more pills.

I think I'll keep the vinegar soak as a last resort...I really don't like the smell of it.

Jean,
What a great idea! I used to take cosamine, pre-BC, for a knee problem I had. Once that resolved, I stopped, but I think I'll check with the onc about starting that again. She okayed the restart of Celebrex (post surgery), so why not a little cosamine?
Thanks for the suggestion!

Elaine,
Thanks for your well-wishes. I appreciate your kindness!

Thank you all, so very much! You're not only a source of wonderful knowledge experience, you are also such a comfort. I'm grateful every day, to have found such a warm, caring group to turn to.

Be well! Stay strong!
Denise

[rhondalea]

Capsaicin is derived from pepper--it's what makes it burn. Eating capsaicin actually helps to prevent clotting, but as a topical, it shouldn't have an effect either way.

I found a mainstream medicine link for you to read more. Note that when it talks about antioxidant action, it's not referring to topical application:

http://www.webmd.com/pain-management...topic-overview

I do not use muscle rubs (because I think they're dangerous), but capsaicin isn't anything like salicylates. I would caution you, however (and I should have said something in my first post), that you should test a small area of the skin first to make sure you're not sensitive. No matter what, you will feel burning the first couple of times you use it, but if it is extreme or if it persists, then capsaicin may not be for you. Happened to a friend of mine after he let me put it all over his back. Not pretty.

As for your thyroid, use caution reading your lab results, and make sure they test FT4 and T3 or FT3, not just TSH. Also make sure that when you test, it is at the same time of day and under the same conditions as your last test.

When I had mine done recently at CINJ, my FT4 was very slightly higher than normal, but that's because the test was done at midday after I'd already taken my medicine. (I take 200 ug Tirosint/day because autoimmune thyroiditis left me with a non-functioning thyroid.) Normally, I have labs done early in the AM, before both food and thyroid hormone, so there was no doubt I would get an inaccurate result. I just let it go, though, because I have an order from the endo for later in the month, and those labs will be done correctly.

I don't like the smell of vinegar either, but I've learned to get used to it because it is so useful, both in the body and around the house. Okay, maybe it's not that I've gotten used to it so much as I've learned to breathe around it. Also, I sit outside on the porch when I soak my feet. Now that it's cool, I'm pretty bundled up, but it's better than the alternative.

[NEDenise]

Rhonda,
The image of you, all bundled up, sitting on your porch, soaking your feet cracked me up! Thanks! I thought I was the only one willing to do "odd" things in order to feel better!

Thanks once again, for your willingness to share your expertise. If you ever need advice about teaching algebra, homework, or getting kids to read books for fun...I'd be happy to return the favor. lol

I'm off to Costco for a jug of vinegar, and a sweatshirt!
Denise

[lkc Gumby]

Hi Denise, Sorry to hear about your pain. You are only out 3 weeks from your last Taxane tx, which could explain alot fo waht you're feeling. Taxanes stay in the body and may have some lasting pain S/Es, ( but they do eventually dissipate. I was troubled with alot of leg pain, and hand pain, and B complex was a lifesaver. As far as supplements, with Herceptin, It's not a problem. Herceptin alone is not a Chemo.
I am also a huge fan of Flaxseed oil which is great for us er/pr neg. ladies.
Give yourself some TLC my dear, you're on a good path.

[NEDenise]

Thanks, Linda!
B complex and Flax seed...got it!
Be well!
Denise