HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 07-22-2015, 07:21 PM   #1
Heathcliff4
Senior Member
 
Heathcliff4's Avatar
 
Join Date: Feb 2014
Posts: 52
Suggestions for Joint Pain?

Hi Ladies,

I am on my 2nd AI, now Letrozole after Arimidex was intolerable. Once again, I'm finding my knees are so quick to injure and are basically always hurting. At this point, I find getting up and down from the floor pretty painful. I'm not yet 45 and have always been really athletic/flexible. I work out 5x a week and am so wanting to get back in strong physical shape after being so battered the last two years.

Any suggestions on what I can do? I am going to PT on Monday (for the second time), but does anyone have supplements they take that help with joint issues and other side effects from AI's? My onc. nurse told me to take Aleve, which isn't really addressing the issue.

Thanks so much,

Kathryn
__________________
Kathryn Ellman

8/2013 Diagnosed age 42 with boys aged 2.5 and 6, Stage 11b, 1 cm her2+++, 30% ER positive, 5% PR positive, Rt Breast. Also DCIS in second spot of rt breast, high grade.
9/2013 Bilateral mastectomy, 3 nodes positive
10/13 Started AC/TH, Perjeta and Herceptin
1/14 Finished Chemo
3/14 Radiation, 5 weeks
4/14 Started Tamoxifen
6/14 Discontinued Tamoxifen due to extreme joint pain, exhaustion and depression
6/14 Started Exemestane and Zolodex shots to suppress ovaries
11/14 Finished Herceptin
11/14 Discontinued Exemestane due to similar side effects as Tamoxifen.
1/15 Reconstruction
3/15 CT Scan (routine) shows possible liver mets.
3/15 PET/CT scan shows no mets - huge sigh of relief
4/15 Began Letrozole. Knee and hip joint discomfort but minimal. Otherwise, knocking on wood - so far, so good!
Heathcliff4 is offline   Reply With Quote
Old 07-23-2015, 03:36 AM   #2
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 563
Re: Suggestions for Joint Pain?

Hi Kathryn

I have been on Letrozole for 20 months. Joint/Muscle stiffness in legs has been a slight problem before but in last 6 weeks stiffness has got worse. Now finding kneeling & stairs etc a bit of a problem. My Daughter, who is a personal trainer, has told me to take Glucosamine. So going to start this in next few days. Really hope it helps.

Any thoughts/suggestions would be appreciated!
Juls is offline   Reply With Quote
Old 07-23-2015, 05:35 AM   #3
Cath
Senior Member
 
Join Date: Nov 2012
Posts: 67
Re: Suggestions for Joint Pain?

Hi Kathryn,

I was on Arimidex (generic form) for approximately 3 years. I had extreme joint and muscle pain which worsened over time. My onc changed me to exemestane which is a generic for Aromasin. My joint/muscle pain is so much better. These AI's can be brutal. Hope you find some relief!

Cathy
__________________
Cathy

Routine mammogram 6-29-11
Ultrasound 7-5-11
Biopsy 7-11-11
Right modified radical mastectomy 7-18-11 with 7 out of 24 lymph nodes positive
Stage IIIC, Grade 3, Estrogen + 100%, HER2 +
Had 5 tumors in right breast, none of which showed up on the mammogram (What showed up on mamm was a lymph node)
Lymphatic vascular invasion
Lymphedema right arm (started shortly after surgery)
TCH started August 15, 2011
Finished Taxotore and Carboplatin 11-28-11
Radiation x 36 - finished Feb. 3, 2012
Herceptin weekly for 1 year - finished 8-13-12
Arimidex started Feb. 2012 for 5 years
Left prophylactic total mastectomy March of 2012

Arimidex stopped August 2014 due to side effects
Aromasin started Sept. 2014
Cath is offline   Reply With Quote
Old 07-23-2015, 07:46 AM   #4
Debbie L.
Senior Member
 
Debbie L.'s Avatar
 
Join Date: Jul 2006
Posts: 463
Re: Suggestions for Joint Pain?

Kathryn, it seems these AIs affect each person differently. Or at least, to different degrees. There is one more AI you could try (Aromasin/exemestane). There was a study awhile back that showed that changing from one AI to another helped reduce pain. Interestingly, it didn't seem to matter which AIs were first/second. There seemed to be something about the change, or about the way each person's body handled the different AIs.

When I had pain on Arimidex, my onc prescribed Celebrex (2nd generation NSAID/Cox2 inhibitor), which did help some. There are various studies looking at NSAIDs/COX2 inhibitors to slow or prevent cancer growth, so that's a possible benefit also. On the down side, Celebrex is the same class of drug as Vioxx, now a drug of infamy for its association with increased risk of cardiovascular troubles. As they say, no free lunch.

The same thing seems to be true for NSAIDs (individuals respond to each one in the class differently). Some people seem to get no relief from Aleve (naproxen) but ibuprofen works well for them (I'm one of those). Same with the selections of COX2 inhibitors. So if you don't want to go the prescription route with NSAIDs (Celebrex is not OTC), you could try ibuprofen (Motrin, Advil). You can take as much as 800mg (4 OTC pills) every 8 hours. Although that much is probably not a great idea for the longterm, it would be worth a try to see if it helps.

Another intervention that has been shown to reduce pain from AIs is exercise (which you're already doing), and perhaps specifically stretching exercises like yoga. I think yoga helped my pain (but who knows for sure).

And yet another remedy that has helped some (both anecdotally and in small studies) is supplementing with Vitamin D, especially if you know your levels are on the low side.

There was someone on this list who had a creative solution. She switched back and forth between AIs whenever the pain became too bad, and said she got relief at least for awhile, when she discontinued one and began the other.

This article from early 2013 offers an overview of some of the things I've mentioned. I wish it had more answers. This Vitamin D-specific one of 2015 did not find a benefit (although both control and experimental groups supplemented with Vitamin D so that's a possible explanation).

Good luck. I hope that with time, and experimentation, you will find a solution.

Debbie Laxague



Debbie L. is offline   Reply With Quote
Old 07-23-2015, 11:59 AM   #5
tricia keegan
Senior Member
 
tricia keegan's Avatar
 
Join Date: Nov 2005
Location: Ireland
Posts: 3,463
Re: Suggestions for Joint Pain?

My Onc told me take Glucosamine/ Chondroitin daily so you could give that a try.
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
tricia keegan is offline   Reply With Quote
Old 07-26-2015, 08:28 AM   #6
Heathcliff4
Senior Member
 
Heathcliff4's Avatar
 
Join Date: Feb 2014
Posts: 52
Re: Suggestions for Joint Pain?

Thanks everyone! So far, the only thing that has worked for me is to take a week or two off. But, I will try the above suggestions.

Kathryn
__________________
Kathryn Ellman

8/2013 Diagnosed age 42 with boys aged 2.5 and 6, Stage 11b, 1 cm her2+++, 30% ER positive, 5% PR positive, Rt Breast. Also DCIS in second spot of rt breast, high grade.
9/2013 Bilateral mastectomy, 3 nodes positive
10/13 Started AC/TH, Perjeta and Herceptin
1/14 Finished Chemo
3/14 Radiation, 5 weeks
4/14 Started Tamoxifen
6/14 Discontinued Tamoxifen due to extreme joint pain, exhaustion and depression
6/14 Started Exemestane and Zolodex shots to suppress ovaries
11/14 Finished Herceptin
11/14 Discontinued Exemestane due to similar side effects as Tamoxifen.
1/15 Reconstruction
3/15 CT Scan (routine) shows possible liver mets.
3/15 PET/CT scan shows no mets - huge sigh of relief
4/15 Began Letrozole. Knee and hip joint discomfort but minimal. Otherwise, knocking on wood - so far, so good!
Heathcliff4 is offline   Reply With Quote
Old 07-26-2015, 10:02 AM   #7
Freakzilla
Senior Member
 
Join Date: Mar 2014
Posts: 55
Re: Suggestions for Joint Pain?

Glucosamine, Chondroitin and MSM work well.
Freakzilla is offline   Reply With Quote
Old 07-26-2015, 11:43 AM   #8
Pat94
Senior Member
 
Join Date: Jul 2013
Posts: 100
Re: Suggestions for Joint Pain?

Glucosamine/ Chondroitin is one of those drugs that either works or doesn't work for you. I tried it for quite a while for my osteoarthritis. Turned out it doesn't do a thing for me. I sure hope it will for you. Others have told me it really helped them.
Pat94 is offline   Reply With Quote
Old 07-26-2015, 11:49 AM   #9
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 563
Re: Suggestions for Joint Pain?

Hi Ladies

Just read an interesting article on AI's & Arthralgia

It is at -
annonc.oxfordjournals.org/content/early/2013/03/06/annonc.mdt037.full

For me on Letrozole, vit D seems to be worth looking into.

Regards
Julie
Juls is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 03:09 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter