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Old 01-18-2010, 09:40 AM   #1
krisvell
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Femara - Sharing your Experience

I just started taking Femara about a week ago and the Onc shared all the potential side effects. I am starting to feel joint pain when I wake up in the morning. As this is a 5 year journey, I am interested to know what to expect based on actual experience.
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06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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Old 01-18-2010, 12:19 PM   #2
caya
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Re: Femara - Sharing your Experience

Hi Krisvell,

I started Femara about 2 weeks ago. I have fibromyalgia and so for me, aches, pains, joint stiffness etc. is nothing new. I have not noticed any real new or increased pain, and I take Aleve, aspirin, Advil or Tylenol to alleviate it ( I find that taking different types of painkillers is good - for me).

I have noticed that I am more tired, so I take the pill at night to use this to my advantage, as I do not sleep well, and I have been sleeping longer stretches - for me, anything over 6 hours is good. In fact I have been taking a sleeping pill nightly for years, I am hoping to wean off it if the Femara continues to cause fatigue.

all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 01-18-2010, 07:28 PM   #3
krisvell
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Re: Femara - Sharing your Experience

Caya,
thanks for sharing. taking the pill at night and painkillers are good ideas.
Kris......
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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Old 01-18-2010, 10:23 PM   #4
Laurel
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Re: Femara - Sharing your Experience

Krisvell,

I have been taking Femara since Sept. I am stiff in my feet and at times hands. If I get myself into a certain position for too long, I pay for it for a few days in terms of stiffness and pain. There does not seem to be a rhyme or reason as to which positions are problematic or not. I am learning to avoid one position on my sofa that just aggravates the heck out of my one hip.

For the most part it is all an inconvenience, but nothing more. I hobble in the morning when I first get up. I'm sure it's quite the sight, but my husband has never laughed! I take my tiny little pill in the evening as they cautioned it can make you sleepy. I cannot tell any difference in that regard. I have gained weight and I know my brain just does not work as sharply as it once did now that I am estrogen depleted. I seem to have stabilized, so I am hoping things get no worse than this. If so, I can survive the next 4 years!

I wish you luck with your experience with Femara.
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Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 01-19-2010, 01:01 AM   #5
Rich66
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Re: Femara - Sharing your Experience

I've been trying to understand if there is "chrontherapeutic" best time to take endocrine therapies. Not much yet except some vague references to increased hormonal production at night. That, combined with other suggestions that side effects are lessened, suggests a night time swallow. I will mention that there seems to be an increasing recognition of "crosstalk" between her2 and ER. Imagine the cancer being pushed along an axis between estrogen and Her2 as it looks for food. Why give it a menu when you can starve it? In other words, you might want to lobby your onc for Herceptin or Lapatinib while you take Femara. They should know the research supports it. If not, have them look at this: http://her2support.org/vbulletin/showthread.php?t=38998 If your onc is up for it and can swing it insurance-wise, methinks lapatinib+Letrozole(Femara) to be worth considering. Lapatinib seems to protect your all-important brain better, albeit at the expense of more trips to the the porcelain throne. If your onc is really listening, have them look at adding Metformin: http://her2support.org/vbulletin/showthread.php?t=39740 Some boswellic acid (available at GNC) can help joint pain and is thought to fight cancer as well: http://her2support.org/vbulletin/showthread.php?t=42084
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Old 01-19-2010, 01:03 AM   #6
Rich66
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Re: Femara - Sharing your Experience

A specific study: Expert Rev Anticancer Ther. 2009 Nov;9(11):1549-57. Lapatinib plus letrozole for postmenopausal patients with advanced HER2(+)/HR(+) breast cancer. Guarneri V. Department of Oncology Hematology and Respiratory Diseases, University of Modena and Reggio Emilia University Hospital, Modena, Italy. guarneri.valentina@unimore.it Lapatinib is an oral, small-molecule dual inhibitor of human EGF receptor 1 (EGFR/erbB1) and 2 (HER2/erbB2). Lapatinib has recently been approved, in combination with capecitabine, for the treatment of HER2-positive metastatic breast cancer patients failing trastuzumab therapy. Data from clinical trials are consistently showing the key role of this agent in the management of HER2-positive disease. Moreover, interesting data are suggesting a key role of lapatinib in enhancing endocrine responsiveness and/or restoring endocrine sensitivity in hormone receptor-positive disease. The present article will summarize the main data leading to the clinical development of the combination of lapatinib and the aromatase inhibitor letrozole. PMID: 19895239 [PubMed - in process] http://www.drugs.com/clinical_trials...ying-6509.html "The encouraging positive results seen in women who are HR positive and ErbB2 positive shows that the lapatinib and letrozole combination has the potential to become a first-line, oral treatment option for clinicians and patients in this setting in the future," says Paolo Paoletti, SVP Oncology R&D, GSK. "We plan to discuss these data with regulators in the near future." Growth factor receptors such as those in the HER2/ErbB family play a key role in cell growth and survival.(1) Targeting these protein receptors is a way in which cancer cells can be killed and tumor growth curtailed. Approximately 70 percent of all breast cancer cases are HR+.(2) Furthermore, tumors that initially respond to AIs can become resistant, leading to disease progression and ultimately, patient death.(3) Recent studies have revealed interactions between HR and HER2/ErbB receptors as a primary contributor to the development of resistance, and served as the hypothesis basis for this study.(4)
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Old 01-19-2010, 06:35 AM   #7
Hopeful
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Re: Femara - Sharing your Experience

Rich, in her signature, she says she is on Herceptin until June 2010. - Hopeful
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Old 01-19-2010, 08:56 AM   #8
Rich66
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Re: Femara - Sharing your Experience

Ah... I guess the question becomes when/whether to stop adjuvant Her2 therapy in a larger/node pos setting.
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Old 01-19-2010, 06:56 PM   #9
krisvell
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Re: Femara - Sharing your Experience

Rich, thank you for the information. Taking boswellic acid for joint pain and seeing if it's beneficial to continue on herceptin or Lapatinib while on Femara. I need to re-read it again to see if I missed anything. You are so kind for sharing your knowledge.
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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Old 01-20-2010, 12:33 AM   #10
harrie
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Re: Femara - Sharing your Experience

I had significant joint issues with Arimadex, so switched to Femara. I do have some joint stiffness during the night and it goes away soon after I am up and moving. So I would say, minimal issues with Femara.
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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 01-22-2010, 08:23 PM   #11
Cannon
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Re: Femara - Sharing your Experience

I also take Glucosamine and Chondroitin and find it helps with the achiness.
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Dx 8/06 Age 43 Stage IIIA multifocal throughout breast, largest tumor 5 cm, grade 3, comedo, ER+PR+HER+++
Neoadjuvant A/C 4X Dose Dense
11/06 Bilateral Mastectomy (no choice on the right, my choice on the left)
Taxol+Herceptin weekly x12, continuing with Herceptin, finished one year in 12/07
33 Rads
Femara for 5+ years, staying on (started with Arimidex, switched after about a month, much happier)
Abnormal brain MRI shows no cancer, but "extensive white matter diease" - unknown cause
BRCA negative - lots of cancer in my family
survivor of thyroid cancer
also have Crohn's disease
CT and bone scan say NED as of 5/13
dx with severe cardiomyopathy 5/12 (likely due to chemo and Herceptin), ejection fraction in low 20's, now up to 40, went to 50, latest read 12/13 is back down to 35
1/13 Acute pancreatitis - are you kidding me?
9/13 started Humira for Crohn's. starting to have some energy again
B12 and Vit D both needed supplementation
Cataracts in both eyes noted 6/12 - surgery in the next 2-4 years?
4/14 Kidney stones/blockage/infection - related to Crohn's Disease
5/14 My aunt passed away - she was diagnosed after I was with Stage I - not Her2+, then Stage 4 for about one year
6/14 Scans - still NED, thank God. However, broken rib (I didn't notice) lots of bone degeneration osteopenia/osteoporosis. I also still have cardiomyopathy secondary to chemo.
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Old 01-23-2010, 12:05 PM   #12
krisvell
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Re: Femara - Sharing your Experience

thank you for sharing your experiences. Getting up in the morning and starting to move is when the joint (hip) pain kicks in. After a while it does get better. It's promising to know that I should be able to deal with this.
__________________
06/08/09 - 55, IDC, IIIA, ER+/PR-/HER+++
Nottingham 6/9 - Grade 2 5.2cm, several nodes
06/23/09 - Neoadjuvant - TCH Herceptin til June
10/07/09 - Finished Chemo
10/27/09 - Mastectomy RB
Path Report: RB No residual tumor pCR,
2 of 15 pos - .5mm largest micromets
12/18/09 - Radiation started (28)
02/05/10 - Finished Radiation
01/11/10 - Started Femara
06/22/10 - Finished Herceptin.. My son's 22nd BD. Hope it's a sign! Hoping for the best.
11/15/10 - Started Walter Reed BC Vaccine trial at
1/04/11 - Sibley Mem. Had to withdraw due to met
01/23/11 - Stage IV - Brain Met 1.6cm 1.7cm
02/03/11 - Gamma Knife (2 fracts to minmize necrosis)
03/01/11 - Gamma Knife
6/11 - Necrosis
7/11 - Necrosis stopped & Tumor progression
8/11 = Now think it's really necrosis
9/11 - Avastin every two weeks -- It's working!! Necrosis is shrinking.
12/11 - Necrosis gone AVASTIN worked.
12/11 - Bone &CT found


Oct '10 - Ran Hartford 1/2 Marathon to Thank Dr. Slamon for Herceptin!
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Old 01-23-2010, 12:42 PM   #13
caya
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Re: Femara - Sharing your Experience

Another suggestion is to take warm baths with epsom salts a couple of times of week - soak for 15 -20 minutes. I do this for my fibromyalgia aches and pains, and I find it really helps. I believe it is the magnesium in the salts that helps.

all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08

Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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Old 01-26-2010, 09:11 PM   #14
CLTann
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Re: Femara - Sharing your Experience

I have taken Femara for 4 years, switching from Arimidex for its joint ache. Except for a few rare cramps I had no problem. I guess everyone is different in getting side effects.
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Old 01-27-2010, 06:59 AM   #15
mirtillo
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Re: Femara - Sharing your Experience

I have been taken Femara for 2 years without any side effect. I only had some joint pain for a couple of weeks at the very beginning of treatment in 2007.
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Laura
Left breast IDC, 4/4/07 Quadrantectomy & Axillary dissection: 4/11 pos. nodes.
G3, Er-Pr+, Her2+++.
4 Adriamicin & Taxol + 4 CMF + 35 rads + 1 year Herceptin + Femara for 5 years
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Old 01-27-2010, 09:33 AM   #16
sarah
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Re: Femara - Sharing your Experience

If you're taking Femara ask for a bone density test - it can "eat" the bones but there are things to take for that.
Sarah
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Old 01-29-2010, 12:03 PM   #17
Miriam
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Re: Femara - Sharing your Experience

Took Femara for 2 years and the cancer came back. Wish I had stayed on Tomaxofin. Tomaxofin was a Genric drug with much success. Femara is very expensive. Wondering if drug co. + more profit had something to do with the change?

Miriam
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Old 01-29-2010, 12:45 PM   #18
mirtillo
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Re: Femara - Sharing your Experience

Femara is really expensive but in Italy you don't pay drugs needed for cancer so I don't know if price has something to do with success...
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Laura
Left breast IDC, 4/4/07 Quadrantectomy & Axillary dissection: 4/11 pos. nodes.
G3, Er-Pr+, Her2+++.
4 Adriamicin & Taxol + 4 CMF + 35 rads + 1 year Herceptin + Femara for 5 years
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