hello ladies... menopause specialist

wallan · January 2008

wallan · January 2008

Hiall:

I just had an appt with a menopause specialist at the cancer clinic.

It was supposed to help me deal with my "symptoms"

It was depressing. Apparently, my achiness, fatigue, bloatedness, sore joints, dry skin, lack of sex want, moodiness, insomnia, lack of memory is menopause and that is may be here to stay. You see I had my ovaries out and then started aromasin so she said I literally have zero estrogen in my body and that this is the first time in history, that women are walking around with zero estrogen. Many women who have been thru this are not fully recoveriing from their symptoms when they stop the AI.

So.... I am feeling a bit down and hopeless I guess. I mean, I really feel crappy most days. I have been to my oncologist, my family doctor several times and now this. There seems no end... only the ability to "manage" the symptoms thru exercise or sleep hygiene or effexor which I take already. Nothing is really working.

I feel my quality of life has gone way down. My energy and stamina has been stolen. I don't even have energy to

feel angry.

Thanks for listening and letting me vent.

Wendy A

Anonymous · January 2008

wendy----just posted to you on the "gaining weight" thread. I had a complete hysterectomy due to ruptured ovarian cysts almost 3 years ago and still take tamoxifen (AIs haven't been tested long enough with LCIS). While I still have some estrogen produced by my adrenals, I still experience many of the SEs that you mentioned. I take ibuprophen for the achiness/stiffness, melatonin for the insomnia, and just put up with the hot flashes as best I can. (dress in layers, no more long sleeves, sweaters, or flannel nightgowns for me! and use a fan all year for sleeping, along with the ac in the summer) I haven't noticed any real moodiness or lack of libido or bloating, but I do feel more tired and less energetic, and have drier skin and memory issues.
Aside from the achiness, the rest of the symptoms you mentioned are common in natural menopause as well (even without tamox or the AIs), but I know none of my menopausal friends are hobbling around like I am sometimes. But I try to keep in mind the benefit I'm getting from the tamox (hopefully, preventing an invasive bc in my future) and that makes it a little bit easier to contend with the SEs. Hang in there, you're not alone!!!!

DragonladyTina · January 2008

I hear ya loud and clear Wendy, I had a total hyst in august/05 and to say the least if sucks!

I am still on tamoxifen though, arimidex was total hell for me, I felt worse that I have ever felt in my life, like a crippled up old lady. I do feel considerably better since the switch back to tamoxifen.

I know it is poor consolation but I consider having the hyst as pro-active breast cancer treatment and that makes it a bit easier to put up with the side affects I guess.

Life has changed in the most dramatic way for all of us,

Best wishes as always, Tina

barbara913 · January 2008

i hear you to wendy... i had a total hysterectomy when i had my bilateral back in sept 05 (42, at the time) and the only good part about it is not getting my period... everything else basically sucks. the hot flashes, the aches the pains, the dryness (if you know what i mean Wink ) the lack of sex drive... i could probably go on, but my memory is shot to shit too!!

i guess another upside about it for me is not to have the worry of all the cancers i could've gotten down there... oh, when i think of it, there are alot of good things that come with it... i am here, and hopefully for a very very long time... so i can bitch and complain some more Laughing

barbara

Anonymous · January 2008

Ditto all of this! I had a total hyst as a preventive measure as in addition to hormone-receptive bc I am a DES baby first on Tamoxifen 2.5 years and now Arimidex 2.5 years. I still have to have an annual due to potential of vaginal cancer due to the DES.

GOD HELP US ALL. Truly the gift that keeps on giving. I am taking Cymbalta for nerve damage pain on my lymph-node removal side and still face depression on occasion. Rare is the day that I don't think of this whole mess and get sad. I have my little cry in the shower about once a month and keep on. If I were to tell my husband about the sad days, he would feel bad and try to make me feel better ... which does not work!

Alisonsbc · January 2008

hi Wendy, i had a total hysterectomy with bilateral ooperhectomy just before xmas and have been on Arimidex for two weeks now, before the op i had been on tamoxifen for 50 days, then zoladex for 3 months, i feel like death warmed up most days, i am going to have my nipple recon tomorrow morning at 8am, will have to get up at 6.30am to get to the hospital, i am normally just going to sleep at that time, it really is an awful way of life that we have, i do not bother going to my gp as i find them very unhelpful, i do not take anything for the symptoms, am hoping my next onc visit will sort me out with something, anyway, take care, if you find something that works let me know, i have heard that Starflower with GLA is very good for the symptoms, but i need to run it past my breast care nurse first as i am wary of taking anything that might make me feel worse!

regards

Alison

TenderIsOurMight · January 2008

Estrogen as culprit in ER+ breast cancer, daily bemoaning the loss of estrogen intended at least in low amounts by Mother nature for we women! What a vicious cycle we now are caught up in, with the unique title of being the first group of women to be walking around with minimal to zero estrogen-intentionally.

Yes, you summed up how I generally feel pretty well, soon to be 6 years.

I pray daily for a new discovery which would allow some relief, but until there is, for me, the estrogen deficient state must go on for a tad longer at least. I dream of blood circulating tumor cells, or circulating progenitor stem cells which may point out a respite: if too high, suppress, if low, let up and recheck at stated time. Or PET/estrogen receptor and glucose infused scanning, showing when treatment needed; or wonders of all wonders, some estrogen, then suppression with hormonals in an alternating manner.

I dream, I dream, and in the meantime, I commiserate with my sisters!

Wallen, I hear you, and I understand your angst!

Tender

Member_of_the_Club · January 2008

Tender, have you been on an AI for 6 years?

TenderIsOurMight · January 2008

Tamoxifen for the first year, then was switched to Arimidex. Five years of taking it will be up March, 2008.

Tender

LizM · January 2008

wallen, I'm right there with you. I was 49 and premenopausal with regular periods in fall of 2005 when diagnosed. I also had my ovaries removed as part of my treatment for breast cancer and am also taking an AI. In less than a year my estrogen dropped to 9 pg and my latest test shows it to be less than 7 pg. I'm not sure if the less than 7 means it is undetectable or just a number less than 7. Anyway I am one of those women walking around with virtually now estrogen. I feel like crap most of the time. I do work and function for the most part but I have lost my zest for life. I don't have the drive, desire or energy to do more than the basic things to get by. I am in constant pain that my body seems to be adjusting to. Physical therapy, massage, lots of heat, advil/alleve and exercise are what keep me going. We are the guinee pigs on these drugs but they seem to be the best we have for the moment and I am too afraid not to take them. I look to those of you (Tender) farther along in this journey to pave the way for the rest of us.

LizM · January 2008

oops, virtually now estrogen should be virtually no estrogen.

JoanofArdmore · January 2008

Liz, I am further along.Unlike tender, I had a horrible every-step-of-the-way.I've been yowling about how awful the zero estrogen s for years, and how unhealthy.

For me, just under 4 years was too much AI.

Because, as Wendy has said, I can't get better , even though I've been off femara since November!

I guess I just cant make enough supplimental estrogen to get rid of my suffering SEs.

I've been on Tamox since first of the year.I had marvellous visions of estrogen-"rich" blood soothing my wretched joints and bringing my memory back to snuff.Dream on.

(Or maybe next month?)

BTW I refused to keep my pain at bay w/NSAIDs.I feared for my liver!To me all that chemo was SO enough!

Hint from EDGE--Traumeel!

It really, really works, and has absolutely NO SEs since it isnt an oral drug.

Binney4 · January 2008

I've been off the AIs since October, after 5 years on Arimidex and 6 months on Femara. For me the Femara was harder than the Arimidex. As there are no guidelines yet beyond the five years, I quit (with my onc's blessing) when the Femara undid me. I hate not having the security of the AI, even if that security wasn't fool-proof. My onc said to exercise more, keep my weight down, and go real easy on red meat (I just avoid it now, period), and that will up my protection almost as much as the AIs did. He also changed my once-a year check-ups back to every six months for whatever peace of mind that provides.

Despite my angst over not having the protection of the AIs any longer, I'm really happy with the improvement in my life. I have more energy, I'm not battling depression, I CAN SLEEP!!!, my hair is getting fuller again and it's much softer. I'm still dry, but even that's improving. I'm still having trouble losing weight too, but that's because I broke my fibula in October and couldn't walk or exercise for weeks. Now that I'm on my feet again I'm ready to tackle that, too. The joint pain is nothing more than the stiff hips I had before bc (a better weather forecaster than my local TV weatherman!) Puzzle books that were beyond my brain power are now possible and fun. Best of all is what LizM called "my zest for life." I get out of bed now and actually am happy that it's morning and there's a new day starting. I'm finally able to think about some goals I'd like to tackle, small and large, and I can face them without having to force myself. Of course I still have this stupid lymphedema, but my sense of humor has improved even with that. ZEST! That's the word, Liz!

I'm NOT writing this to encourage anyone to stop the AIs or tamox. I happen to think they're a great addition to the other treatments we have available. But I am writing it because I wish I'd had some grasp of exactly what it was I was fighting when I was taking AIs. Was it just that I was getting old, and that's why I felt sluggish and lost? Is that why every joint in my body ached? Was the listlessness and the struggle to get out of bed in the morning just because the BC had forced me to face my mortality and it knocked the zest right out of me? Or was the Post-Traumatic Stress symptoms following treatment the culprit that tromped on my libido and made me feel so helpless about my appearance?

I just want to scream: NONE OF THE ABOVE! WE'RE ALL FINE -- WE REALLY ARE!! It's just that when we're on AIs we're still in the thick of this BC battle. Our bodies are taking a beating, but underneath WE'RE ALL STILL OURSELVES, and all the hopes and dreams and joys and pleasures are still a part of us, just waiting for a time when we can reclaim them. Some day you'll all feel better, you really will. But for now, fight the good fight. Do take yourself in hand and force yourself to move toward those things you know are good, things you'll someday be proud and happy about. You KNOW who you are, so ONWARD ANYHOW!

Whew! Didn't realize I felt that strongly about it! Laughing

Binney

JoanofArdmore · January 2008

Oh Binney, Thank you!

I knew it was femara that was killing me.And I very much fear I have changed to Tamox too late.Because I'm nowhere near getting better at all.But you give me hope!

And yes, as soon as I quit Femara in November, I DID begin to sleep!WOW!What a total LUXURY!

And truely, soon after I quit femara, I suddenly WAS capable again, of filling in blocks of the NYT Crossword Puzzle.(Although still cant remember so grea, in general).

And maybe there is less hair on the white bathroom tiles.

And maybe my knees actually ARE getting back to their old arthritic being, not the new, super-duper, ever worsening constant pain.

My zest Is returning, and I missed it most of all.Zest is my middle name.But slowly.I feel zesty, make plans only to have to back out because I'm still a weak old lady.

I also dont have the AI insatiable appetite!Glory be!How great is THAT?

I broke out of "training" and bought a box of Trader Joe's frozen ready-to-bake brownies on a freezing day.

And found...they really arent so good.Need vanilla.This is 3rd day and still about half left.I truely crave some nice chard, rather than vanilla-less brownies from a mix!

While on Femara-this would NEVER have happened.I would have vaccuumed up ALL the brownies the first day!

Binney, dont worry about your weight, because you're no longer an insatiable eating machine!The weight will come off naturally!

Ohhhhh.AIs are great drugs, but horrible to be on.And they really need a lot of tweaking.

I think they WILL be great drugs...for the NEXT wave of us.

wallan · January 2008

I love the word "zest" too!!! That is exactly it. My zest is gone.Truly.

I have to admit that finally, my fear of bc returning may not prevent me from stopping the AI's. I would rather feel better than take the drug and hope it fights bc. I almost wanna stop and take my chances.

But then that nagging little voice inside my head starts... "but what if you stop and the bc comes back? If you had stayed the course, you would be alright...."

And my familys pleading me to take the drug.

But honestly, I don't want to live feeling this unzestful.

But then agaiin, I am alive. .... barely, but I am alive.

Wendy A

JoanofArdmore · January 2008

Barely is right, Wendy.When I think of the woman I used to be...strong, active, cheerful, zestful,bright,capable, healthy, hearty..and I see what the drug has turned me into--an old, weak,painfilled, doleful,exhausted cripple--a cranky woman in the guise of a witless fat babe..I absolutely think "barely alive".

Did we say you do not want to take Tamox?Because I am taking it and actually recovering myself, slowly, every day more.

I SO recommend it.It isnt a BIT like AI.!

When the going became impassable on femara, my onc gave it to me as an option.I refused it.But after another 3 months of suffering,I was ready to just QUIT all HT, and so took the tamox.Because although it feels like a lifetime, a horrible, loooooong lifetime, my time on AI has only been under four years.And I do want to put my 5 years in.

hugs, j

Anonymous · January 2008

"an old, weak, painfilled, doleful, exhausted cripple--a cranky woman in the guise of a witless fat babe..."

OMG! I couldn't have said it better! Nobody could have!

susanmcm · January 2008

Thanks for your post Binney. I hope after the 5 years are up, they tell me to get off the arimidex or at least there is a newer better drug to take without all the side effects. Many people just don't believe how difficult it is to keep taking this drugs every day.

I recently took a drug vacation for a month. At the end of that month I didn't think I had noticed that much of a change but soon after I started the Arimidex again it all came back. "old, weak, painfilled, doleful, exhausted cripple" That person I don't recognize.

hello ladies... menopause specialist

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