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Old 03-04-2008, 11:50 PM   #1
harrie
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Arimidex/joint prob update

I have been on Arimidex since mid-May of this yr. By around 6 months started getting this "trigger-finger" in my thumb. I was almost ready to swtich to another AI, but I had acupunture done about 1 1/2 wks ago and it feels improved. It still locks, but it feels stronger and it has less discomfort.
I have some joint discomfort, but I only feel it at night when I wake up in the middle of the night. During the day I am pretty much fine except for the very limited motion in my left thumb only.
I do yoga 3 to 4 times per wk and I think that is helping overall with the joints.
Harrie
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 03-05-2008, 10:53 AM   #2
Karen W
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I have a real problem with the fingers on my right hand. The middle finger tends to feel like it is going to lock and the others are just really stiff. I don't know what to do.
I have an acupuncture appointment next week, so I'll see if he can help me.

Karen
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Old 03-05-2008, 11:51 AM   #3
MJo
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Yes! My finger joints seemed to pop. I was afraid they would pop out of their sockets. Trigger finger is a good description. The oncologist's nurse practitioner nodded when I mentioned it. I've been on arimidex two years and, Glory Be, my side effects have eased up some.
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IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
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Old 03-05-2008, 02:04 PM   #4
PinkGirl
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Hi Harrie
Like MJo, my symptoms are easing up. I've also been
on it for about 2 years but my pain is mainly in my feet.
I hope it settles down for you too.
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

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Old 03-05-2008, 05:50 PM   #5
Patb
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When I wake up in the morning I feel 100 years old, but as the day goes
by I get younger. By bedtime, I am fine. I have been on Arimedex for one
year, four months. Exercise does help, its just that first step!!
patb
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patb

Diagnosed June, 06, Stage I, Grade3, ER+PR- Her2positive, No Nodes. A/C X 4. Radiation 33 with boost, Herceptin every two weeks until Nov.
07, Arimedex for 5 years. Mugas and Echo and chest xRay. Bone scan of whole Body, and Back of Brain and spine MRI.
CT scan of Lungs every six months
due to two small places. December
2009, bone scan due to bone pain.
Follow up test in 2010.
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Old 03-05-2008, 06:45 PM   #6
Bill
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Hi Harrie! I'm sorry to hear about your joint pains (and the rest of you as well). I wish I could help more, but I'm glad the yoga is helping. Also, maybe a little T'ai Chi would help, too. And last, but not least, maybe get one of those warm foot-bath things. If you're feet are warm and relaxed, that feeling can transfer to the rest of your body. And my usual prescription of a nice, long hot bath along with scented candles and soothing music, as you visualize the aches and pains and worries and stress leaving your body and floating away. Love, Bill
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Old 03-05-2008, 08:29 PM   #7
Joan M
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Hi Harrie & Karen, I'm estrogen negative, so I have no experience with Arimidex or "trigger finger," but I'm wondering about trying acupuncture for osteoarthritis in my knee.

Can you give me any tips?

My right knee started bothering me last November and I started physical therapy a few weeks ago because the pain wasn't going away, but it doesn't seem to be helping much (an x-ray and MRI showed no cancer).

I'm considering acupuncture, which I've never tried before, and thought I'd ask my oncologist about it. She's very sharp, has a doctorate in microbiology for breast cancer studies and, as luck would have it, was also born and raised in China, and went to medical school there, too.

Any suggestions?
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 03-05-2008, 10:12 PM   #8
Bev
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I've been on Aimidex 8 months and my right thumb is a mess, with all the fingers feeling stiff. I wrap my hand around a nice hot coffee mug before trying to bend that thumb. Pops like crazy for a few hours in the morning.

Would acupuncture be covered by insurance? Glad to know it gets better over time.

BB
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Old 03-05-2008, 11:32 PM   #9
harrie
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The acupunture definitely helped my thumb feel stronger and more functional. It still does NOT bend without assistance. But, even with a stiff left thumb, I can still function and use my hands normally. I believe the acupunture opened up the channels and that is when it feels better. I would suggest trying it if you have not already. Also, if one acupunturist does not work well, try another person before giving up.

Thank you for all your responses! I appreciate it!
Harrie
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 03-05-2008, 11:50 PM   #10
Anne C
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Joint pains from Aromatase Inhibitors

Is it all aromatase inhibitors that cause joint pain?
I have been on Aromasin for three months.
I feel like the Tin Man who was caught out in the rain without his
can of WD 40.
I had my tx yesterday. I have Zometa and Herceptin every three weeks.
Afterward for 3-4 days have terrible joint pains. Anywhere where you have had a previous joint problem or arthritis , pain is magnified.
Has anyone else experienced these symptoms with zometa or
aromasin?
This is a wonderful web site, so many wonderful positive,intelligent
women. God Bless you all.
Anne C.
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Old 03-06-2008, 12:04 AM   #11
harrie
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Anne C,
You can try switching to another AI. My good friend had significant joint problems with Arimidex and switched to Femera and is doing well. But I did hear that Femera has similar side effects as Arimidex.
Arimidex at this point for me is manageable. If it becomes more of a problem, my oncogist is suggesting I switch to Aromasin and try that.

I am not familiar with Zometa as far as it causing joint pain. As far as what I have experienced, Herceptin caused me minimal if any side effects and there was no joint discomfort.

Hope this helps you.
Harrie
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*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 03-06-2008, 06:52 PM   #12
Joan M
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Thanks for your input about acupuncture. I'm going to look into it. Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
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Old 03-06-2008, 07:02 PM   #13
Bill
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Hi everybody! Anne, my wife had Zometa once a month, and when she started, her doc. told her it was known to cause "flu-like" symptoms, and sure enough, it did, aches and pains.
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Old 03-06-2008, 07:52 PM   #14
TSund
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Hi, I posted this on another similar thread, but can anyone tell me the "whys" behind the joint pain? Is it the lack of estrogen or some other thing associated with these drugs?

Thanks

TRS
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Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
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Old 03-06-2008, 08:02 PM   #15
PinkGirl
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I have read about that and it looks like
no one is really sure where the arthritic-like
pain comes from.

In every article I've read they talk about low
estrogen and low vitamin D being a possible
cause but don't know for sure.
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Dx Aug/05 at age 51
2cm. Stage 2A, Grade 3
ER+/PR-
Her2 +++

Sept 7/05 Mastectomy
4 FAC, 4 Taxol, no radiation
1 year of Herceptin
Tamoxifen for approx. 4 months,
Arimidex for 5 years
Prophylactic mastectomy June 22/09



" I yam what I yam." - Popeye

My Photo Album
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Old 03-08-2008, 11:20 AM   #16
Anne C
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Thank you all for your reply

Thanks you for your response to my question re: AI's
I take a multivit daily with Vit D 400u.
I also take omega 3 daily to try to lubricate joints.
Bill, the first time I had Zometa aprox 8 months ago, I had terrible
bone pain. I could not even stand my glasses to press on the bones
behind the ears. This lasted 4 or 5 days but each succesive time was
a little better, but I still have the bone andjoint pain ( more than usual) for 3-4 days after Zometa.
Does anyone take CoQ10 to help prevent CHF from Herceptin. IF so what
dose. I am presently taking 125mg CoQ10 daily
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Old 03-08-2008, 11:38 AM   #17
Donna
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joint poppin' fingers lockin' - we got a CW song here!

It might just be that I am staying in the hotel in L.A. where they are hosting the auditions for Nashville Star for NBC on the country western song idea.

My only concern when it comes to my thumbs moving in and out of joint ( which does hurt! ) and my fingers locking is this: does it go away at the end of the 5 yrs and am I doing permanent damage by using my hands when they hurt so much, ignoring the pain. I doubt there are answers out there yet on this, but shouldn't we as a group let the AI people know this is a significant problem requiring their attention and answers?

Donna
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Donna in the Sierra Foothills of California

Diagnosed 6/7/06 invasive ductal carcinoma/ductal carcinoma in situ
Lumpectomy 6/21/06
Pathology: Er 99% Pr 10% Her2/neu 3+
DNA Index 1.0
S-Phase 3/High
Primary Tumor 2.4 cm Sentinel Node Tumor 2.1cm
A/C/T+ Herceptin + rads + Arimidex
stopped Herceptin after 7 mos. due to low MUGA
Surgery for thickened uterine tissue May 2008 - conclusion: side effect of Arimidex
Switched from Arimidex to Femara - joint/tendon problems significantly better!
2 year mark Pet scan and Echo shows all clear!
5 year mammogram with ultrasound shows no sign of cancer - yay!
11 years, 11 months new breast cancer - found lump
Mastectomy 4/30/2018
Pathology: Er99%, PR 28%, Her2 negative! (new type)
Faslodex
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Old 03-08-2008, 02:53 PM   #18
harrie
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Anne C, I know the CoQ10 is really good for the heart. I am not sure of the recommended dosage, but I know that there are others on this board that have this info. I believe there are other threads out there on the CoQ.
You might want to consider taking Vit3. It is 1000 IU. I take a total of about 1800 IU of vit D per day.
__________________
*** MARYANNE *** aka HARRIECANARIE

1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen

2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy

2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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Old 03-08-2008, 04:51 PM   #19
Soccermom
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Count me in,AGAIN, on the joint pain. Arimidex since February 2006. I thought it was getting better while I was out on medical leave for recon (this Aug-Feb) however now that i am back to work (retail) I am in more pain as each day passes. Last night I did not sleep a wink....sigh...I have tried Armomasin and Tamoxifen...eat right ,take vitamins dont drink alcohol (maybe I should?). I also had one ovary removed last year due to a persistent cyst. Hair has thinned a great deal. Face is rounder, arms arm MUCH heavier ...I *think* my body is SCREAMING for Estrogen which ,alas,I cannot take. HOWEVER, one must wonder when if ever "quality of life" is ever enough of a reason to discontinue AI's prematurely (before 5 years are up)?
Harrie, I DID have trigger finger last year that miraculously went away?!
I wear a pain patch and take oral meds for "breakthrough".
Marcia

Last edited by Soccermom; 03-08-2008 at 05:11 PM.. Reason: more info
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Old 03-08-2008, 05:00 PM   #20
Mgarr
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Ok, was going to keep quiet but I CAN'T.

I was ER/PR- (no AI's) and I have some serious joint inflammation. It began in my thumb (this is not meant to scare) and then wrists, elbow etc. Apparently(I say this because I had no idea) I had some arthritis in my hip at my first bone scan but 2 months after finishing chemo/herception I began severe hip problems only to have a total hip replacement. Shortly after my hip surgery every joint in my body swelled up to the point where I could barely move.

After my treatments I would swell put on weight not sure anyway i was much heavier for 3-4 days until I flushed it all thru but after hip surgery it became a permanent severe state.

This inflammation may be from being forced into menopause, or the combined effect of all treatment on my immune system I just don't know. It is just strange that so many of us are having joint pains.

Both my mom & mother-in-law have been on Tamoxifen with no complaints of joint or bone pains. My mom finished her 5 yrs. Tamoxifen and started Femara and began severe joint pains, she went off it they went away, tried again same problem. At this point I believe the dosage has changed and she seems to be okay.

Just my ramblin' 2 cents.

Mary
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Diagnosed 11/04 @39yrs. young
Stage IIB
2.5 cm, ER/PR- Her+++, grade 3
Partial Mast., 1/3 pos. node
1/05 full node dissection
4 A/C 4 Taxol DD, Herceptin 1 yr.
30X rads.
BRCA Negative
NED

Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all -Emily Dickinson

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