Boo! for Tamoxifen...

Kellennea · 10-25-2011, 02:23 PM

Five years?!? I’m not even past the 6 month mark and i dislike it muchly! Any advice for the muscle/joint pain I am experiencing? This is terrible! I have always been very flexible, work out, run… I can't even do yoga any more, I feel like if I stretch my legs too far they are going to break off.

The other day a friend watched me sit on the stairs to put my boots on and suggested that I switch to Velcro (not funny, friend!) Anyone know of any supplements that could help? Kinda stinks to be 45 and have to hold onto my dresser to be able to bend down to put my underwear on. ugh!

Thanks

Kelly

tricia keegan · 10-25-2011, 02:27 PM

I had/have these side effects with arimidex but did'nt know Tamox can cause this also, my onc suggested Glucosamine/chondroitn which helps a little but you need to take it a month or so before noticing a difference, walking or any type of exercise helps me too!

CoolBreeze · 10-25-2011, 03:35 PM

Unfortunately, it didn't work for me. I recurred five months after I started. But, I remember well the pain and aches. My onc gave me a low dose of oxycontin. I took 10 mg in the am., afternoon, and PM. It's slow dose so it just stays in your system. The pain went away and after a couple months I thought, "I don't need this drug anymore" and stopped. Well, a week or so later - ouch! So, I went back on. No shame in getting pain meds if you need them - this is bad pain that will last five years.

The good news is when you finish your tamox, it goes away.

Good luck!

Kellennea · 10-25-2011, 04:58 PM

Thanks ladies!

CoolBreeze, I found your blog the other day. You are such a great writer. I laugh, I cry, I nod my head in understanding. Today I got caught reading it at work (eeek). Hope you are doing well and healing fast from your resection.

Paula O · 10-25-2011, 05:16 PM

Cool Breeze,
I noticed your comment in your sig line:
"Tamoxifen, the worst drug ever, started 5/2010"

Whew, worse than chemo?

Was it the aches and pains that you were referring to or other problems?

Have any folks here experienced problems like blood clots or uterine cancer attributed to Tamoxifen?
Paula

BonnieR · 10-25-2011, 08:09 PM

Must you stay on Tamoxifen? Or can you switch to another AI drug like Femara or Aromasin? I am not clear if Tamoxifen is the only drug of choice for younger patients. BUT, otherwise, my onc had me switch from Femara to Aromasin when the Femara caused alot of joint pain and trigger thumb. She explained that these drugs are interchangable and you never know which will give an individual the least side effects. I figure I can switch around and cover the 5 years!
Keep the faith.

Kellennea · 10-25-2011, 08:41 PM

Good question Bonnie. I had my last cycle last December, after my first chemo treatment. It's been almost a year. (Am I crazy for missing it, 'cuz I kinda do... but I think that is because I misscarried the august before my dx and we do not have any children and... well, we never will.) I would think that I would be switched to a post menopausal drug now. I have my last herceptin next wed. I guess I'll discuss with my Onc.

CoolBreeze · 10-26-2011, 01:22 AM

Thank you for the compliment on the blog Kellennea. I've been lazy about writing my recovery but will start again tomorrow. It seems easier cruising the forum right now.
I though tamoxifen was worse than chemo. I have done carboplatin, taxotere, taxol, and navelbine, along with zometa and herceptin, and thought tamoxifen was the worst. Not sure why it hit me so hard, but I truly felt 90 years old on that drug. I am almost glad it didnt work.

Almost.

chekmark · 10-26-2011, 04:27 AM

Kelly,
I know that you will be having your LAST herceptin next week. YAY. You may want to wait a few weeks after herceptin to see if it gets any better. Herceptin can also add some joint pain. I am on femara and the joint pain in the beginning was horrible but I was told to try to weigh it out for about 6 months to see if it got any better, it did but about 8 to 10 days after each herceptin it gets worse again for about 4 or 5 days. I have 1 more herceptin than you to go and I am hoping that it gets better after that. I call it my herceptin hangover. Just a suggestion. I try not to take anything for it but sometimes I resort to a mobic which helps mildly. Good luck and I will be thinking about you next thursday. We have so many similarities. Being diagnosed 1 day apart, same treatment. I also see that you just celebrated your 2nd anniversary. Congrats.I just celebrated mine as well. 14 tho. Take care and god bless. Darlene

Rich66 · 10-26-2011, 12:45 PM

Boswellia (GNC) and Fish oil very quickly reversed stiffness after years of Arimidex that lingered even after being off Arimidex. Later when she went on Tamoxifen, didn't seem to make her stiff.
Be careful about some of those over the counter joint pain Glucosamine/Chondroitin. What concerns me is that some of them list hyaluronic acid as one of the additional ingredients. I remember reading hyaluronic might be bad for cancer patients. Glucosamine seems like it might actively fight cancer.
Seems Tamoxifen is the go to drug for premeno adjuvant BC. There is Goserelin too, but not sure if it's approved everywhere. Faslodex might eventually be approved for early stage BC..but not yet.

BonnieR · 10-26-2011, 01:13 PM

Rich makes a good point. We should be careful about any supplements we take until we get approval from our medical team. Things that seem "safe" may interfer with treatment or other medications we are taking. I took Glutamine because my onc suggested it.
Keep the faith

Rich66 · 10-26-2011, 01:29 PM

Unfortunately, many docs will have little problem combining prescription drugs with therapy but have strong aversion to supplements..though there may be more supporting research regarding the supplements.

BonnieR · 10-26-2011, 01:47 PM

At any rate, I would be sure my medical team knew everything I was taking. Even baby aspirin! My cancer center had a pharmacist one could talk to who helped coordinate drugs/supplements, etc and that was a good resource.
Keep the faith

Kellennea · 10-27-2011, 07:57 AM

Thanks everyone!

This is on my list for my Onc meeting on Wednesday. I always bring a post-it note with questions... over the months they have gotten smaller, but I have a feeling that now that all of my "safety nets" are being taken away from me, I'll have more questions again

Darlene - we are running on the same schedule! Happy 14th anniversary!!!!

Kelly

Jackie07 · 10-28-2011, 09:50 PM

Kelly,

Not sure if you are familiar with the issue/test discussed here: http://community.breastcancer.org/forum/80/topic/745307

I was given the test while I was still with BCBS - required by the insurance company. Right after I'd had the test, I switched to the insurance company directly affliated with my hospital and my oncologist told me to continue Tamoxifen because new study had shown continued benefit even after 5 years.

Coolbreeze - not sure if I'd mentioned it to you before, but I thought the reaction you'd had with Tamoxifen could have had something to do with the tumor in your liver. I would guess it's because of the metastasis that you were having such terrible reaction with Tamoxifen (because it could not be absorbed/metablized.) [Just an unqualified, wild guess.] So glad to see you are up and about.

Kellennea · 10-29-2011, 10:10 AM

WOW! Thanks, Jackie!

Very interesting. I am for sure going to discuss testing with my Onc on Wednesday. I love going into her office with questions like this

Sometimes I feel like I might be a little annoying but whatever - it's my life!

BonnieR · 10-29-2011, 10:19 AM

Absolutly it is your life! No one will advocate better for you than yourself! The doctors work for us, although it is hard to remember sometimes.
Be the squeaky wheel! And keep the faith.

Andrea Barnett Budin · 10-29-2011, 01:07 PM

Hi Kelly,

I hear you. Only did 2 yrs of Tamoxifen but didn't have those side effects. HOWEVER, did 8 mnths of Taxotere and found I had to sit to brush my teeth. It was an energy thing.

But I also had constant, horrid, deep pain throughout my arms and legs, kept stumbling on my toes when I tried to walk.

I used to hold on to the nearest wall when I walked. Walked on all fours up stairs! Sat if possible wherever I went. Rather pathetic. I know.

Yrs later I mentioned yrs later that I occasionally felt that same horrid pain and I know it sounds crazy. He said, No that's not crazy at all. He had several patients w/ the same complaint. Weird how chemo strikes us.

I take Omega 3 twice a day and I swear at 67 I am rather spry, bend and stretch, lift and move, shuffle cards and type -- all free of any pain. I swear I think it's the Omega 3's, which have multiple benefits. RB has posted extensively on the subject.

I also take energy boosters and immune system boosters daily, which also contribute.

Still, gotta laugh, I put my underwear on by bending to the floor and lifting my toes, then sliding the pants under. One foot at a time. Seems to be a balance thing.

BTW, I've been hanging out in chemo rooms for over a decade. Seen many a doc and nurse over time. Mainstream docs, no matter how brilliant, just don't get supplements. Don't know about them. Don't trust them.

When I recurred ('98) -- you can check my story below -- I saw an oncological integrative medicine guy in Manhattan. He specializes in supplements. Also meditation, guided imagery, sound therapy. He gave me a long list of supplements to take daily.

My reg oncs said wait till after chemo. I didn't feel right about that. I was quickly in such bad shape on Taxotere. Developed shingles, they had to stop tx. I was a 4th stage invasive lobular carcinoma, 80% HER2 + and sinking fast. My NY onc said with passion -- DURING CHEMO IS WHEN YOU ARE MOST IN NEED OF THESE SUPPLEMENTS.

I went with my gut, my Inner Voice. It took a bunch of courage, which I didn't feel too confident that I had, but I went w/the supplements. Honestly, I don't think I'd still be here had I not helped my body withstand the toxins it was getting (of necessity, of course) and the awful side effects (pleural effusion, peri-cardial effusion). But, I made it!

Did the meditation and guided imagery too. Talked to my body. And to the Universe. Daily. And still do -- to this day!

Do everything you possibly can to feel better. Healing can be a slow process, and tenacity is key. Believe in your powers, Kelly! You're on your medical team. In fact -- you are in charge...

Love,
Andi