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 09-10-2016, 05:20 PM   #21
RedHen
Senior Member
 
RedHen's Avatar
 
Join Date: Jan 2014
Posts: 109
Re: Femara

Hi - I'm 2 1/2 yrs post surgery and taking generic Femara. I have a lot of bone/joint pain, and my hands are the worst. I can't make a fist with my left hand in the morning, and that makes getting anything difficult. I've been recently diagnosed with peripheral artery disease and have to wear industrial strength knee-high support hose. Getting those things on and off is a chore. I need another set of hands, or at least one pair that work.

Since there are a large number of you who have been on this drug for ten or more years, I'm interested in knowing if the bone/joint pain gets better, or is this the way it will be. What do you do for pain? I take arthritis strength acetaminophen and use topical ointments as well.

Thanks,
Lynne
__________________
Bilateral mastectomy w/sentinel node biopsies, December 20, 2013
12 nodes positive; stage IIIb
Began chemo January 21, 2014

Priors:
Partial colectomy, January 1996
Radical colectomy, March 1996
Crohn's & GERD
Gluten sensitivity
Chronic anemia from GI bleeding
Relapsing polychondritis w/tracheomalacia and neuropathy in feet
Vasculitis
Sjogren's syndrome
Rosacea and ocular rosacea
Hypertension
RedHen is offline   Reply With Quote
Old 09-10-2016, 06:24 PM   #22
donocco
Senior Member
 
Join Date: Oct 2013
Posts: 349
Re: Femara

Lynne

You could try Vitamin D supplementation. This has to be done with the doctor even though you can get Vitamin /d over the counter, as what counts is the blood level. In one experiment, patients taking Aromatase Inhibitors who achieved a Vitamin D level (I believe its the 25 hydroxyl form of the vitamin) of 66 ng/ml had significant relief of Aromatase Inhibitor joint pain. Its worth a try and to have a high vitamin D level is very beneficial as far as breast cancer in general in terms of survival. Many doctors are used to thinking a Vitamin D level of 30ng/ml is excellent and might think a level of 66 is too high. Vitamin D does not become toxic until the level is 150ng/ml or more. To have a level of 70ng/ml might benefit the joint pain and is likely to slow the breast cancer progression. Speak with your oncologist.

Paul
donocco is offline   Reply With Quote
Old 09-10-2016, 06:36 PM   #23
Carol Ann
Senior Member
 
Join Date: Dec 2013
Posts: 1,031
Re: Femara

Hi Lynne!

I have been on Arimidex since April 2014, my onc has me on 5,000 IU of Vitamin D3 a day in gel capsules ... and except for some morning stiffness in my fingers, I have not had any joint pain at all. Something I am extremely grateful for!

Carol Ann
__________________
July 24, 2013: "Infected" Right Nipple and benign cyst removed, pathology report revealed Paget's, DCIS, and ILC 1.25 cm, ER+/Pro+/HER2 equivocal, Grade 2 under benign cyst, previous diagnostic mammo/ultrasound said I was perfectly healthy in both breasts.

Aug 18, 2013: MRI report says Left breast is perfectly healthy "consistent with previous studies".

Sept 2013: I insist on a bilateral mastectomy anyway. Too nervewracking to let left breast remain with higher risk after 3 cancers in right, nipple in right is already gone anyhow.

Sept 18, 2013: Bilateral mastectomy, 11 right nodes removed, ALL negative BUT -- ER+/PRO+/HER2+ tumor, 1.0 cm, Grade 2 found in a piece of "grossly unremarkable" breast tissue from prophylactic mastectomy of left breast, no nodes removed.

Oct 25, 2013: 13 left side nodes removed, ALL negative, Stage 1 across the board, NO RADS needed, YAAAAY! Port also installed.

Nov 25, 2013 Begin 6 rounds TCH.

March 10, 2014 Just finished 6th and LAST Chemo today, YAAAAAY!

March 24, 2014 Echocardiogram to make sure I'm still good for Herceptin every 3 weeks.

March 31, 2014 Echo results NORMAL, first Herceptin all by itself. Now if only my eyes would stop streaming from the Taxotere ... :)

April 21, 2014 Started Arimidex and therapy for "mild" lymphedema in left hand and arm

May 2014 Therapy completed, I have sleeves and gloves for both arms, a Flexi touch lymph pump to hook up to for an hour every day, and I've become an arm bandaging expert. :)

June 2014 Begin Fosamax to prevent osteoporosis; bone scan revealed osteopenia

Nov 17, 2014 FINAL Herceptin!

Dec 4, 2014 My right thigh muscle has been extra achy for days ... I discover a blister rash cluster on the side of my right thigh while taking a shower. Port appointment cancelled until Dec 17, my doc is working me in tomorrow afternoon to see me and the rash. My muscle at least feels less achy.

Dec 5, 2014 Yep, I have shingles. Boo! I start acyclovir and also have a prescription for a painkiller just in case for over the weekend.

Dec 17, 2014 Port is OUT!

January 2016 Shingles again and this time it started where my left breast (where the hidden HER2+++ tumor was!) used to be. My onc nurse got me a same day appointment to see my doc when I called and told her I had a rash on the site. The antiviral meds are working once again, though, so that is good news. :)
Carol Ann is offline   Reply With Quote
Old 09-12-2016, 02:02 PM   #24
RedHen
Senior Member
 
RedHen's Avatar
 
Join Date: Jan 2014
Posts: 109
Re: Femara

Thanks Paul and Carol Ann. I have been on 50,000 IU vitamin D once a week for years - way before I had cancer. It was prescribed by my rheumatologist to help with osteoporosis. One of the oncologists I've seen since my move gave me an infusion of Zometa for ostoporosis. I hope one or both of these measures will help, but neither has stopped the bone/joint pain.

I guess there's nothing more to be done.
__________________
Bilateral mastectomy w/sentinel node biopsies, December 20, 2013
12 nodes positive; stage IIIb
Began chemo January 21, 2014

Priors:
Partial colectomy, January 1996
Radical colectomy, March 1996
Crohn's & GERD
Gluten sensitivity
Chronic anemia from GI bleeding
Relapsing polychondritis w/tracheomalacia and neuropathy in feet
Vasculitis
Sjogren's syndrome
Rosacea and ocular rosacea
Hypertension
RedHen is offline   Reply With Quote
Old 09-13-2016, 12:23 PM   #25
donocco
Senior Member
 
Join Date: Oct 2013
Posts: 349
Re: Femara

Red

What was your last Vitamin D blood level? This is what is important, as the 25-Hydroxycalciferol level should be close to 70 ng/ml. Four people could take 50,000 units of Vitamin D weekly (its a very pretty dark emerald green caplet) but each person may have steady state Vit D blood levels. Don't worry too much about Vitamin D toxicity. Doses of one million units daily Vitamin D have been given to patients with Rickets, a Vitamin D deficiency. Toxic levels of Vitamin D are 150ng/ml plus. To get joint pain relief with Vitamin D the levels in one study averaged 66ng/ml. This is why I suggest 70mg/ml

Paul
donocco is offline   Reply With Quote
Old 09-13-2016, 12:26 PM   #26
donocco
Senior Member
 
Join Date: Oct 2013
Posts: 349
Re: Femara

I meant to say 4 people (for that matter 100 people) could take 50,000 units of Vitamin D orally weekly and there would be a large range of steady state blood levels. Do you know the latest one?

Paul
donocco is offline   Reply With Quote
Old 09-15-2016, 02:32 PM   #27
RedHen
Senior Member
 
RedHen's Avatar
 
Join Date: Jan 2014
Posts: 109
Re: Femara

Paul - I don't know my D level, but I assume it's OK with this supplement or someone would have told me to stop taking it. I take the one you describe - dark green gel cap. However, that's not quite right; it's entirely possible that no one has paid any attention to my blood work. My oncologist left last fall, and the hospital has resorted to using traveling doctors. I've had four in the past year. Every time I go in, I see someone else. I don't think this is a good thing.

We - the cancer patients - are hoping we'll get a permanent doctor soon. No one likes the current situation.

Lynne
__________________
Bilateral mastectomy w/sentinel node biopsies, December 20, 2013
12 nodes positive; stage IIIb
Began chemo January 21, 2014

Priors:
Partial colectomy, January 1996
Radical colectomy, March 1996
Crohn's & GERD
Gluten sensitivity
Chronic anemia from GI bleeding
Relapsing polychondritis w/tracheomalacia and neuropathy in feet
Vasculitis
Sjogren's syndrome
Rosacea and ocular rosacea
Hypertension
RedHen is offline   Reply With Quote
Old 09-15-2016, 03:08 PM   #28
donocco
Senior Member
 
Join Date: Oct 2013
Posts: 349
Re: Femara

Lynne

You cant assume because absorption of a drug or vitamin is so individual. Yes your Vitamin D level is probably OK meaning its 30ng/ml or above. But optimal in your case might be 70ng/ml. You owe this to yourself.

I know medicine has changed with the takeover by insurance. It isn't even medicine anymore. Medicine used to be controlled by the doctor. The doctor is subservient to the insurance company. Its beyond sad.

Its possible there are lab services on the internet that measure Vitamin D levels. Ill search around. Its terrible that things have come to this. Sometimes I believe real medicine doesn't exist anymore. I'm sorry if I come on too strong. I used to think of myself as a very shy introvert. My motives are not selfish.

There was quite a turmoil when Vicodin was made a class 2 narcotic by the DEA.
While there are very legitimite uses for these drugs but they are abused. As a working pharmacist I was delighted not to be filling so much Vicodin anymore. Maybe I'm being hard hearted but the DEA would come down on us when we weren't the ones prescribing it.

Anyway I'm getting off on a tangent. There were a lot of messages on the Aol board about the Vicodin story. Most were very critical of the DEA. But one message stuck in my mind and I had to laugh. This "wit" who claimed to have a back problem and it may well have been true, stated "Things have gotten so ridiculous that a Chinese peasant 2000 years ago could get pain relief with his bowl of smoked opium much easier than a pain patient in 2016. There may be some truth to this.

Paul
donocco is offline   Reply With Quote
Old 09-15-2016, 03:11 PM   #29
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 541
Re: Femara

Hi Jean

I was on Femara for 2 1/2 years until last year (Taken off because bone met found).
For last 6 months on Femara I was getting really stiff. Oncologist suggested a change of AI to see if that helped or a break. Never got this far but have read that some other ladies have changed AI until side effects bad again and then changed back.
Within a short time of stopping Femara stiffness went.

Juls
Juls is offline   Reply With Quote
Old 09-17-2016, 10:28 AM   #30
RedHen
Senior Member
 
RedHen's Avatar
 
Join Date: Jan 2014
Posts: 109
Re: Femara

Hi, Juls,

Sorry to be exposing my ignorance in so public a forum, but I am not familiar with "AI" except as a short for autoimmune. Please explain.

Thanks,
Lynne
__________________
Bilateral mastectomy w/sentinel node biopsies, December 20, 2013
12 nodes positive; stage IIIb
Began chemo January 21, 2014

Priors:
Partial colectomy, January 1996
Radical colectomy, March 1996
Crohn's & GERD
Gluten sensitivity
Chronic anemia from GI bleeding
Relapsing polychondritis w/tracheomalacia and neuropathy in feet
Vasculitis
Sjogren's syndrome
Rosacea and ocular rosacea
Hypertension
RedHen is offline   Reply With Quote
Old 09-17-2016, 10:44 AM   #31
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 541
Re: Femara

Hi Lynne

It is short for Aromatase inhibitor.

Regards
Julie
Juls is offline   Reply With Quote
Old 09-17-2016, 10:48 AM   #32
Hopeful
Senior Member
 
Join Date: Aug 2006
Posts: 3,376
Re: Femara

Lynne,

No worries, I don't speak anagram, either. . "AI" stands for aromatase inhibitor, which is the class of drug Femara is. It acts to prevent the body from converting the hormone androgen into estrogen. Hope this helps.

Hopeful
Hopeful is offline   Reply With Quote
Old 09-17-2016, 10:55 AM   #33
Juls
Senior Member
 
Join Date: Mar 2014
Location: UK
Posts: 541
Re: Femara

Hi Lynne

I'm just learning all these things as well!!
Julie
Juls is offline   Reply With Quote
Old 09-17-2016, 02:13 PM   #34
donocco
Senior Member
 
Join Date: Oct 2013
Posts: 349
Re: Femara

Even though Androgens are male hormones and Estrogens are female hormones chemically they are very similar and apparently both males and females make one from the other. In women there is a weak androgen called Androstenedione which is converted to a weak estrogen called Estrone. The enzyme that catylizes this conversion is called Aromatase and drugs like Femara and Arimidex inhibit this aromatase enzyme. The body changes Estrone (a weak estrogen) into more active estrogens like Estradiol.

Paul
donocco is offline   Reply With Quote
Old 09-17-2016, 06:15 PM   #35
Paula O
Senior Member
 
Paula O's Avatar
 
Join Date: Jul 2011
Posts: 954
Re: Femara

I had lots of ferocious leg cramps on Femara, the Charley Horse kind that you can barely walk til they pass.
Paula O is offline   Reply With Quote
Old 09-19-2016, 02:24 PM   #36
RedHen
Senior Member
 
RedHen's Avatar
 
Join Date: Jan 2014
Posts: 109
Smile Re: Femara

I'm very familiar with the leg cramps - as well as the bone and joint pain. I guess we can expect to look like raisins, too, since this stuff sucks every drop of estrogen out of our bodies. However, looking like a raisin won't bother me as long as I feel pretty decent! I've earned my wrinkles and wear them with attitude. ;-D
__________________
Bilateral mastectomy w/sentinel node biopsies, December 20, 2013
12 nodes positive; stage IIIb
Began chemo January 21, 2014

Priors:
Partial colectomy, January 1996
Radical colectomy, March 1996
Crohn's & GERD
Gluten sensitivity
Chronic anemia from GI bleeding
Relapsing polychondritis w/tracheomalacia and neuropathy in feet
Vasculitis
Sjogren's syndrome
Rosacea and ocular rosacea
Hypertension
RedHen 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 05:16 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2018, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007
free webpage hit counter