Femara: Need Advice, Please.....

[ladysmith105]

Hi Everyone,  After 3 months of Femara I suddenly developed carpel tunnel syndrome.  My entire right arm became numb in the middle of the night; I thought I was having a stroke or heart attack.  I called Novartis & they sent me the requested 9 pages of info about musculoskeletal  side effects, the most common being carpel tunnel & trigger finger.  I saw a hand specialist who provided hand braces and said I would eventually need the surgery.  The braces work at night to prevent numbness to my hands and arm, and protect the nerve.  I discussed this with the Oncologist & I decided to continue taking it as Novartis said the side effects may be transient.  Then.... after another month or so I did develop trigger finger to my thumb which became very painful.  Still painful with 600mg of Ibuprofen.  The Oncologist & I met again and I am off for 30 days and will then start Arimidex as Novartis indicated switching often helps, with side effects abating or decreasing with a switch.  I have been treated with Acupuncture as recommended by a fellow survivor, and per Novartis women who used Acupuncture in Clinical Trials had the most relief.  After 5 treatments (5 weeks), I am about 65% bettter, and decided to remain off Femara for another 2 weeks until I am 100% so I will know the true effects of Arimidex after I start it.  I asked my Acupuncturist if she had a herb I could take if I cannot tolerate Arimidex or Aromasin; she said there is something, so I am hopeful there is a light at the end of the tunnel.  Novartis indicated that side effects usually resolve after 30 days which is not the case for me.  My Oncologist said they may never go away.   I am very discouraged by that sad fact.  To those of you who have taken Femara or Arimidex, & had a similar experience with carpel tunnel or trigger finger, how long did it take for side effect to go away once the drug is stopped?  
The Warmest Regards to all of you out there.

[ladysmith105]

Thank you for the info about the 3 Carbinol.  It's a shame that mainstream MD's don't suggest these natural treatments when others fail.  I did see an integrative/alternative MD in Jan. and found out my Vit. D was very low.  Why my primary MD or Oncologist did not check it out first is beyond me.  He suggested curcumin also.  In addition he suggested Lactobacillus/Acidophilus to boost my immune system.  I will ask him about the 3 Carbinol.  My Acupuncturist said there is an herb that can lower Estrogen also.  It may be Milk Thistle.  It's good to know there are other things I can try if I cannot tolerate Arimidex.  I think my Oncotype was a 10% risk.  I did not have Chemo & MD did not recommend saying the hormonal treatment would be the most effective for me.  That is a why I felt so upset that I couldn't tolerate Femara.  However, Chemo only reduces risk for recurrence by about 30% for most people.  I feel eating right, exercising, de-stressing, & getting enough rest can also protect me, maybe even more than we know.   Most importantly eating fresh fruits & vegetables helps maintain the proper PH within the body.  Thanks again for the info.!

[coporter]

Thanks for your comments-I spoke with my dr tonight & he said my choices are to try Arimidex & if that isn't any better than the femara- then maybe we'll try tamoxifen.  (my concern with that is the possibilityof blood clots-my mother almost died from a pulmonary embolism) Congrats on losing 50 lbs- I need to clean up my diet& stick with fresh whole food-I have stopped my nightly wine & only have 1 or 2 glasses on the weekend.
I still have another week off before I try the Arimidex-let me know how you do- Take care-

[alidi]

Hi: I am also on FEMARA and about to quit it. The ADVERSE effects are terrible,
I am PR+ ER+ HER -, ONCO TEST 8% RECURRANCE, what else? I hate what this therapy is doing to my quality of life. And to me ,it is very important,I am seeing an alternative Dr. in conjuction with my Orthodox Dr. There is a natural therapy:
3 CARBINOL, this will help balance your PR ER, without the terrible side effects
3 Carbinol is a pill made of broccholi, kale cauliflower,and all cruciferous veggis.
I am taking that everyday plus 20 more natural compounds ,to boost my inmune system,
like Milk Thistle, Maitake musrooms, quercetin, curcumin, green tea extract and
Diindolymethane, which comes from 3 Carbinol, CHECK WITH YOUR DOCTORS BEFORE YOU TAKE ALL THESE,Good luck!!!

[ladysmith105]

Hello,
I just started Arimidex after being off Femara 4 months.  I just kept waiting for all the symptoms of carpel tunnel syndrome & the trigger finger to completely resolve.  I had 10 treatments with an acupuncturist & then finally a shot by the Ortho. for the trigger finger which was very painful & also the most troubling for me.   My Dr also wanted only a a 4 week break, & when I went for my 3 month check up she wasn't happy I was off for so long & suggested Tamoxifen.  I'm still afraid of Tamoxifen due to my diagnosis of slight hyperplasia of the uterus years ago.  I will give Arimidex a chance since the reps at Novartis who manufacture Femara indicated a switch often worked for other women.   I didn't need Lupron so I can't comment on that.  I lost 50 lbs in the last year by switching to the Cancer diet, alot of frest fruit & vegetables, no processed food, no alcohol or snacking before bed (I used to have 1-2 glasses of wine with a snack 5 out of 7 nights.)  I also started working out at the gym in a fitness program for CA survivors & now work out 3-4 days a week.  I am so sorry to hear of your problem.  I will continue to comment on my progress.  Please keep in touch with me.  Best Regards

[coporter]

I have been on Femara for about 9 months-when I wake up in the morning my feet/ankles & knees hurt like I am 100 yrs old & my shoes don't fit anymore! I started with the carpal tunnel a few months ago & now have tendonitis in my thumb/wrist (this actually bothers me the most of all side effects-other than the weight gain) anyway, my oncologist also has me on a vacation right now-has been almost 3 weeks-my knees do feel somewhat better-although not back to normal-tendonitis is just the same-I am trying to work around it.
The plan is to switch to Arimidex-not sure exactly when-he originally said 4 weeks, but since I still have the joint pain, maybe we'll wait a little bit longer.  I am wondering if this joint pain could be a side effect of the Lupron shots as well that I needed in order to start on the femara-anyone have any idea on that one?

[slee56]

I have been taking femara for a year now and I too had shots for the carpal tunnel. They helped a lot but at night I sleep with a brace and a quilted sleeve on my right arm because I also have Lymphodemia in my right upper arm. Everyone is diffrent in how the meds work hope you find what works for you... shar

[ladysmith105]

Thank you for responding; it's so reassuring to know I may not have permanent damage from Femara.  Novartis said in the report I obtained on line that most symptoms abate after about 30 days.  I have read some things on another site about a young woman about 42 who stuck it out 6 years and never regained her pain free status. I know we are all different & react differently.  Did you first try Arimidex or Femara?  My Onco. mentioned that Aromasin is somewhat different in chemical composition than Arimidex & Femara, and thinks that is the drug that may work for me.  However, I am going to try Arimidex first; whenever my trigger thumb & Carpel Tunnel improve to 100%.  Did you have any problem with numbness to your hands at night?
God Bless.  

[survivor_susie]

I made it a year on Aromasin with the same side effects.  The trigger fingers were gone within about 4 months.  The aches left after about 3 months.  They're still gone.
Best of luck.

[ladysmith105]

Hi Katrina,
Thank you for the quick response it's so therapeutic when you start to lose patience and get discouraged.  I went for my yearly pap yesterday and spoke to the OB/GYN about the problem.  He seems to think another Aromatase Inhibitor will just bring on the same problems & suggested Tamoxifen saying his experience has been there are fewer side effects.  I finally saw a integrative MD two weeks ago who checked my Vit. D (no MD has done this yet! ); and it was low.  Novartis also said that is a common problem with women who have the musculoskeletal SE.  I am afraid of taking Tamoxifen as I had a D & C to treat fibroids in 2000 and found I have very slight hyerplasia to the uterus.  The MD doesn't see this as a problem.  I recently had a baseline vaginal ultrasound to look for enlargement which there is, as the fibroid stems cannot be removed from the uterus, only the lining.  I am doing everything possible for optimal health. I am 5'1" and have lost 35 lbs. since my dx last April from 178 down to 143 lbs., by cutting out processed foods and eating lots of fresh fruit & veggies, 10% or less animal products daily is my goal.  ( I recommend "East to Live" by Dr Joel Furhman. )  I also participated in the "Live Strong" program at the YMCA, a FREE fitness program specifically for cancer survivors, for 12 weeks, that provides a personal trainer for 1 hour 2x a week & a 1/2 hour relaxation class 1x a week.  Then they give you a FREE 3 month membership.  I now work out 2-3 hrs a week with various classes/machines.   It's a wonderful program.  Anyway, I know less body fat = less estrogen, and more exercise = less estrogen.  When I find out the name of the herb I will let you know.  I believe it is in the misteltoe family.  At least something is better than nothing if that is what it comes down to.  How long were you able to stay on Tamoxifen?  Do you take anything now?

[ladysmith105]

Thank you for the quick response it's so therapeutic when you start to lose patience and get discouraged.  I went for my yearly pap yesterday and spoke to the OB/GYN about the problem.  He seems to think another Aromatase Inhibitor will just bring on the same problems & suggested Tamoxifen saying his experience has been there are fewer side effects.  I finally saw a integrative MD two weeks ago who checked my Vit. D (no MD has done this yet); and it was low.  Novartis also said that is a common problem with women who have the musculoskeletal SE.  I am afraid of taking Tamoxifen as I had a D & C to treat fibroids in 2000 and found I have very slight hyerplasia to the uterus.  The MD doesn't see this as a problem.  I recently had a baseline vaginal ultrasound to look for enlargement which there is, as the fibroid stems cannot be removed from the uterus, only the lining.  I am doing everything possible for optimal health. I am 5'1" and have lost 35 lbs. since my dx last April from 178 down to 143 lbs., by cutting out processed foods and eating lots of fresh fruit & veggies, 10% or less animal products daily is my goal.  ( I recommend "East to Live" by Dr Joel Furhman. )  I also participated in the "Live Strong" program at the YMCA, a FREE fitness program specifically for cancer survivors, for 12 weeks, that provides a personal trainer for 1 hour 2x a week & a 1/2 hour relaxation class 1x a week.  Then they give you a FREE 3 month membership.  I now work out 2-3 hrs a week with various classes/machines.   It's a wonderful program.  Anyway, I know less body fat = less estrogen, and more exercise = less estrogen.  When I find out the name of the herb I will let you know.  I believe it is in the misteltoe family.  At least something is better than nothing if that is what it comes down to.

[katarina777]

I had/got the same thing from Tamoxifen and what happened with us is definitely from those meds. It also did not start in the first 30 days but months later. I had to have the surgery for trigger finger. The surgery was not painful as i was put under but those times when my finger got stuck and had to be opened up with force was horribly painful and scary.

The doctor told me, the hand surgeon, that it may have to be redone, but the thing has healed completely even before I stopped the tamoxifen which was a couple of months later. (I have also heard from other patients taking femara, etc, that they have suffered from this a lot) When I switched to Arimidex, immediately the symptoms came back, but I stopped it right away.

Prior to the hand this, and it was not just trigger finger but another condition with it called Dupuytren's Contracture, I had a similar thing, except worse, with my right leg that was also caused by the Tamoxifen .

Although these conditions, and the leg one, is supposed to be chronic, mine healed completely. Also make sure your Vit D levels are checked and normal; it's really important.

Katrin

[japdip]

No personal experience here but after a drug is discontinued it takes various lengths of time for the side effects to subside. You should keep in mind that even though most of the drugs in that class have the same side effects BUT not everyone will experience them all OR to the same degree. Only the switch will tell you how Arimidex will affect you. I know of no herb that would have anywhere near the same action as the drugs that are being used now for Hormone suppression; if there were something it would be used in everyday practice.  It will just have to be trial and error I'm afraid .... Regards ....