Aromatase Therapy Timing Key in Breast Cancer Survival

Fearless_One

With 100 products on the market for vaginal dryness, I would never use an estrogen lube.   

Fearless_One

LtotheK, I never could open the link.   I don't know if I have a bad browser or what....

LtotheK

I think it's a dead link, in fact--go to the search for that whole topic.  There was plenty of interesting discussion (and Day and I debated the interpretation of the numbers, too).

OG56

This article made me go hmmm, it seems I am always out of step with the most current research findings. I have been on Arimidex for 3 years now and they are talking about keeping me on it for 10 if my bones hold up. I have dropped in my dexa scan into the range just barely above osteopenia. My vit D level was 9 corrected it with 50,000IU a week to 34 in a year. I now don't see a benefit in staying on it for more than 5.

Sloan Kettering is doing a trial on Vagi Fem to see if there is systemic uptake of estrogen. So, far it is looking promising, however, my Onc did say that some woment have shown an increase in their estradiol levels from use   I moved away from NY so couldn't partake in the study. He did tell me though that I could have my estradiol level checked without and then use it and have it checked again, so I might do that to combat the SE of menopause and AI use.

LtotheK

While it's pretty useless to talk about "gut", I have to say, I respond really poorly to the idea of being on these meds for 10 years.  I'm just not sure I'd sign up for that.

Kindergarten

Hi, there!!! Originally my onc in Pittsburgh wanted me on Aromasin for 10 years. I have been on it now for 6 1/2 years. When I moved to Chicago, my new onc said that his research showed that there is no benefit beyond 5 years so he wants me to stop taking it in November. I e-mailed my old onc in Pittsburgh and he then agreed with my new onc. My bone loss has been significant and my immune system is weak. I am afraid to go off of it, it has been my safety net. Since two doctors now agree, I guess I will stop taking it. Thanks for all your discussions on this topic. Kathy

rgiuff

Medigal, your Onc sounds like a dictator who refuses to listen to reason.  Who is he to decide that you should have to live with vaginal pain?  This should be your decision, that you make after the doctors give you the pros and cons and the statistics and risk factors and you decide what you can and can't live with. 

I've tried the replens and plenty of different lubes and they just didn't help, still left me with a raw feeling.  The only thing that really does work is the vaginal estrogen.  I have the cream and use it very sparingly.  My Onc has no problem with it at all, as long as I use just a little dab.  Not the whole plungerful that the package directions say.  And I use it 2-3 days a week when the rawness starts up again.  Once the tissues are back to normal, I'm usually good for a week  or two before I have to use it again.

It's your body, and quality of life is important.  What are all these life prolonging treatments for, if life is miserable?

345grace

Is there any long term survivors, without HRT ?   I have tried Arimedex and Femora, since June 2011, now- nothing.  Between leftover neuropathy, and the onset of severe artritis ( I assume) walking with cane, am headed for a wheelchair.  This was so fast, I am angry and afraid.  Oncologist is not forthcoming about cause, effect, cure, help. Bone Density 10/11/11, just know it shows arthritis. ( fingers, swelling in calves, knees, ankles, bottom of feet)Even my elbows, and mast. site hurts(wakes me up).  Will not see him till 11/15/11, made an appt. with a GP next week. Am on the oxi-pain meds, very scary as they don't work very well, even with addtional doses.  Can I live without the hormone therapies?

Kindergarten

Dear 345grace, I am sure there will be some ladies here who did not take the aromatose inhibitors and will respond shortlyI am finally going off aromasin after almost 7 years on it. I am a happy girl, even though it was tolerable. Good luck with all your decisions. Kathy

beau

HI 345grace,

 I am sorry to hear of your troubles! I had a really hard start with Arimidex, but have managed to stay on it now for 9 months. It hasn't been easy but please keep in mind a few things:

1) 55% of folks who have trouble with one AI can switch to another one and feel much better

2) A break of a few weeks and then starting up again can also help. You could also switch to Tamoxifen which acts differently and can be used by post menapausal women who can't stand to be on AIs.

3) don't suffer in pain! Get whatever meds that you need to alleviate/mitigate problems. I have never worried about addiction; just staying reasonable pain free and getting some sleep have been my goals. As things have settled down, I have been able to cut back naturally on drugs. I still take 1/2 a muscle relaxer pill, 1/2 of a NSAID in middle of day and something to sleep at night

4) consider changing your diet to dairy free and gluten free. Doesn't work for everyone, but really helps some. Also, get your Vit D level checked out as that can really make a difference as well.

For me, I have 3 herniated disks in my next that went nuclear when I got the arthritis that is such a common side effect of the AIs. I took pain meds, NSAID and finally a muscle relaxer. I had trouble sleeping too. Fuzzy thinking, you name it.

It did settle down after about 3 months, but it was very hard to keep going. I couldn't have done it without some medications to take the edge off the pain and to keep me positive. Check out the other threads here. I follow the one on Arimidex and it really helped me when I was starting out. I still find it very useful.

Recently, my cholesterol level has shot up (just when the arthirits is becoming bearable) so I am trying to change my diet before I consider taking a statin. Never a dull moment. 

Before you give up, please look deep into your heart to be sure that it is the right thing for you.  Your diagnosis indicates the the cancer had spread to your nodes so you do need to weigh all the factors carefully. In my case, I am 52 with 2 young kids, ages 10 and 13, so I wanted to throw everyting at it even though I have had my days when I want to go AWOL.Alas, I still have more than 4 years ahead of me, but if I can get through them cancer free, I will be grateful for the trade.

In any event, best of luck on your journey and i hope that things get better soon. 

Best, Beau 

ILwoman

What did the BC doctor mean by saying that was enough? 

jaspersmom

I have been on Arimidex for a year - after 2 years on Tamoxifen...and then last year a hysterectomy. Intercourse has become painful. KY not great. I don't like the customer reviews on Replens and don't want to go the hormonal way. I have recently heard that pure jojoba extract works. It is also a natural antifungal and antibacterial. In its purest form it has no chemical additivies. Massage therapists use it. Does anyone know about this? You can google 'jojoba as a personal lubricant'. Also I've seen a thread in another forum here about something called 'scream cream'. Anyway, for those looking for alternatives to Replens, check it out. I'm going to try out the pure jojoba extract to see if it helps. I hope there is a non-hormonal and non-yucky solution for us all. It's a huge problem. Regards to you all!

trigeek

ok so I thought I would chime in gals..

Vaginal Dryness:

None of the otc stuff worked.. replens was like ajoke my girlie parts were like parchment paper almost ready to rip !  

After meticulous research I am using Estring estrogen ring. in a very low dose one. My oncologist is ok with the ring but not with the creams as one cannot monitor the dosage accurately whereas the ring is supposed to self modulate. And he is VERY conservative oncologist.

In my bloodwork my estrogen levels were really low (the one that we should be worrying about estradiol ? ) so I can tell that using Estring did not make it go up.. now was it lower ? I dont' know but the current levels pleased the doctors.

I was on tamoxifen until it decided to play a trick on my ovaries which looked like a beehive (complex cycts) so off they went and I went on Femara.

I do have some side effects but I am getting older (49 now ) have been on Femara for 3 years so I really do not know which one hosed me up.. chemo ? age ? femara ?

Sleep: 

I did a Clean program for a very light detox ( 3 weeks yummy food ) cleanprogram.com ( I did the book version do not have that much money to spend on supplements) .. and my insomnia which was not fixed by sleep study(OMG THAT WAS TRAUMATIC !! ), ambien, ambien CR, lunesta, rozerem.. only xanax or tylenol PM was helping... was gone after I did the Cleanse. Definitely recommended ! 

Foot pain:

Well I had to stop running but I also think that the weight gain put extra pressure on my toesies. High heels have headed to goodwill for good. I just wear cushy comfy shoes.

Oh and high amounts of Fish Oil and D3 are great for this kind of foot pain.

Creaky joints:

Yoga... I cannot stress it enough.. I definitely need to do some yoga if I want to be able to get up from bed slower than my 94 year old grandma.. I just have to keep on doing it.

Foggy memory:

Oh well at least I have an excuse now.. my nickname is 'DORI; anyways. (finding nemo)

Lack of energy:

Hmm I am not sure that this hit me but I am a very active gal so I just keep chugging until I drop lol.

Hope this helps some of you gals..

trigeek

oh and after chemo my bone density came up osteopenic so using that excuse my oncologist dosed me with 4 Zometa infusions .. twice a year. Have not gotten a new test.. guess I should ask for one this year.

jojoxoxo

I was diagnosed in 1998 at age 39, stage 2, grade 3, 1 positive lymph node --- had 5 years on tamoxifen.  After I stopped the tamoxifen, after everyone assumed I had gone through early menopause due to chemo, I started getting periods and ovulating again!  So then, a full hysterectomy and oopherectomy, because they didn't like that at all---estrogen is my enemy.  Then, I've had 5 years on the aromasin and just finished that last summer.

I had significant bone loss over the 10 years, was sometimes dismayed at the big decreases each year, but it is slowly comming back.  I have taken Actonel, and Fosamax but have financial problems keeping up with these drugs.  In the U.S. there are patient assistance programs, but in Canada, where I just moved, I have not been able to find any yet.

I don't know about timing and everything--turns out I was doing lots of things wrong, like being on SSRIs and other anti-depressants all through my treatments, but that was before any sort of findings came out about anti-depressants perhaps interfering with chemo and tamoxifen.   

cheekycarol

My GYN and Onc agree that I can continue using vaginal estrogen cream as long as it is not combined with progesterone. According to them, the cream is localized and creates no danger.

I just finished radiation and will be starting arimidex shortly. I am scared to take this drug for five years. Quality of life is important also.

Anonymous

Cheekycarol - I've been taking Arimidex for 4 1/2 years - and from suggestions on the AI SE thread, I've been able to manage any SE I had.

Beau covers a lot: gluten free, Vitamin D levels ( keep them above 50) acupuncture is the greatest treatment I've found to remove all joint pain.  Had to sleep with wrist splints at the 3 month mark, that seems to be when most of any of the SE's we're going to have kick in.

Exercise, exercise, walking, yoga.  My docs ( Dana Farber) want me to stay on something for past the 5 year mark - definitely!  I am fortunate to genetically have "good bones" - the genetic component of bone density in women is high - deca scans every 2 years have been good for me, no decrease in bone mass anyplace ,that isn't a factor of age

As for "dryness" anywhere - I swear by Whole Foods brand 365 Virgin Coconut Oil.  Everywhere.

jennifer1

I have been on all of them except Femara.  I am now on Tamoxifen which has been the worst.  My vision is going and various other side effects.  I am 65 so I worry about clots and uterine cancer which doctor says is very low percentage.  Also worry about breast cancer returning.  After reading and trying all of them it is much better to be able to see than walk.  Evidently those are my choices or cancer returning.  The other thing is that they could cure this dreadful disease and we take nothing. 

golfergrandma

Am new to this thread, but wanted to add something.  I was diagnosed with bc in 2001 (h2n+) and was on tamoxifen for a year when I switched to arimidex.  In December 2011 was diagnosed with bc in the other breast (er/pr+) while still on arimidex!  Am bilateral at this point and onc prescribed tamox.  Can't tolerate the tamox (severe pelvic pain/pressure) so am trying aromasin for a month to see how it goes.  Am tolerating it very well so far, but don't know how much benefit it will provide as far as recurrence goes.  Any thoughts?

Omaz

golfer - Glad to hear that the aromasin is working out so far!  I always assumed that it had the same statistical protective effect as the others - arimidex and letrozole - but maybe it will be better for you since it works in a different way I don't know.

marian1

Not sure exactly how to enter this dialogue. Am interested in talking about libido. I have been on Femara for three months and I can sense it dwindling. Orgasms which registered 10 on a scale of one to ten are now more like threes. I had this big worry about the other side effects and nothing else to complain about.  

Moderators

marian, as well as the advice you'll read from other community members, there is a section on libido and some of its causes and solutions at the main Breastcancer.org site. You'll find it at this link.

Judith and the Mods

marian1

thanks for the link. I think I will need to talk with my doc. This dwindling did not start until 3 months to the day after starting the medication. Prior to that I had no change at all...not the week of surgery. not during radiation..so I think its chemical.  I will try some other strategies and I have a topical fluid called Zestra which has some impact   But if anyone has any other ideas let me know..its not really interest as much as it is arousal. I dont see people talking about this   I do appreciate not having bone pain, night sweats, wild hot flashes etc  I just never anticipated this

rgiuff

Marian,  I've had this problem since starting perimenopause 4 years ago.  I've now been postmenopausal for almost 2 years and sometimes I get lucky with the orgasms and sometimes they are a huge disappointment.  You can try reading through the thread called "I want my Mojo back", where women discuss their sexual difficulties.  I've tried many different things for this problem, had things prescribed by my Onc, as well as my GYN.  I've also tried the Zestra.  You can PM me if you want more details.

EVO13

I will be starting radiation therapy shortly and then need to go on one of the three AI's. I cannot decide which one. Any help with side effects from those on them would help me. Also, how did you pick which one to go on? I am scared about the side effects.

ruthbru

Go with whichever one your doctor recommends, because that is the one he/she knows the most about. Most people do NOT have horrible SEs. Naturally, it is people who are having trouble who are the ones talking about it. I hae been on Arimdex for over 4 years and am doing fine. We estrogen postive ladies are SO LUCKY to have anti-hormonals available. Few SEs could be worse than having to deal with cancer again, and they give us a huge boost in risk reduction. I waited until I was done to start Arimidex. At the time anyway, research said it didn't matter if you started during rads or right after. I figured I'd rather deal with one set of potential SEs at a time. So you might want to ask about that. Best of luck! ruth

EVO13

Thanks Ruthbru. Do you know why your Dr. picked Arimidex over Aromasis or Femara? Continued luck to you.

ruthbru

I asked him & he said it was because that was the one that he was most familiar with. No other reason.

EVO13

Thank you. Please take care. This is all new to me.

ruthbru

If you have any questions that I can help you with, please feel free to PM me!