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MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

Hi to my sisters

It's been a while since I posted something. I am in a funk these days...for many reasons. But there is one topic I continue to flip flop with. That is taking Arimidex. I really don't want to take this stuff. It is messing me up big time. I hate the side effects and hate that I no longer feel womanly. I am sure you know what I mean ... my husband misses me. :(

What I just don't understand is WHY I am taking this drug when all my reports favor the idea that recurrence is likely to never happen. I did the surgery and rads and that IMHO should be all there is to it. Of course, most of you know that I have suspicious looking spots on my lungs and the docs just can't answer what these spots are. I have a scan set for November 26 and I am hoping that this scan is the end. I don't want to continue with tests and scans without getting answers. It's breaking me down!!!

So ... I stopped the Arimidex hoping that my old self will surface soon! I even stopped other meds because I hate taking pills. (Metformin, singular, prandin, Crestor). I feel as though I am on a path to self destruction. You know, if cancer wants to make a come back, it will. My RO stated that "sometimes the meds don't work". SO I have no idea if Arimidex is doing its job or not. Why would these nodules be growing and multiplying IF this med is working???

I'm sorry. I am at my wits end and I just feel so dead inside.

Thanks for listening.

SIROD's picture
SIROD
Posts: 2133
Joined: Jun 2010

Mary,

Why not ask for the scan this week instead of waiting until November? If the nodules show enlargement then ask for VATS a (video assisted thoracic surgery). That will give you an answer that it is either, lung cancer, breast cancer spread to the lungs or just a inflammatory nodule.

I did what you are doing and the results were = it spread to my ribs. Breast cancer malignant cells might have already been in the rib bones and it might not have been there prior to my stopping Arimidex. At any rate I went from a regional recurrence to metastatic. I wish, I wish, I wish but it's to late now.

When I began having pain, the surgeon said "blame radiation" and the radiation oncologist "blame surgery" and the oncologist said "you've been through a lot dear, have some prozac". In the meantime the ribs continued to hurt and damage was being done. Finally when the first of my issues was fixed, I began to think about the Arimidex I had stopped the year before do to issues that they wouldn't, couldn't answer. I still had some Arimidex pills and started them. The pain went away and I was now a member of a stage I had hope not to belong.

Mary it's driving you crazy, why not demand an answer from them. Nothing less will do!

Best,

Doris

lynn1950's picture
lynn1950
Posts: 2573
Joined: Jun 2008

The vaginal dryness from taking Arimidex really sucks. I went to a LiveStrong/YMCA event a couple of weeks ago. There was dancing and Yoga and meditation and art and music and a counselor. The counselor was there to talk about issues of intimacy. I bet there were 50 women in the room when she spoke and you couldn't get a word in edgewise as we all shared our Arimidex grievances, but you could have heard a pin drop when she started talking about solutions, and I mean silicone based gels. She gave out samples, and I tried one out that night. A little messy, but a whole new wonderful (non painful) world. I ended up buying Pink silicone lubricant, but there are different brands and types. I got mine at a little condom shop in Boise called Ozone. Don't be shy and don't give up on the Arimidex. xoxoxo Lynn

New Flower
Posts: 3996
Joined: Aug 2009

If vaginal dryness your only side effect it could be fixed
You can find your magical lubricant or moisturizer and will fine
Please do not give up

mom62
Posts: 600
Joined: Mar 2004

Mary,

A lot of us suffer with these thoughts you are having. I started crying reading your post. It's all so familiar. I'm lucky in that I don't have side effects from Arimidex. I will tell you though that my friend has Ovarian Cancer and her markers started to go up they put her on Arimidex and they started coming down within two weeks. I know everyone is different. The Metformin is for diabetes, I would consult with your doctor before you stop that. I want to do the same thing some times. I feel like I'm all druged up and not myself but everything seems to be doing it's job. I get Lupron shots so that helps kill the drive for me as well. Check with your doctor to see if there is anything that can help in that department, maybe over the counter.

I'm in a deep depression myself. It's been going on for a while now. I'm trying to work it out with the therapist. You have been through so much these feelings are natural. Not that any of us want to have them because they stink. I'm thinking of you and hope some happiness comes your way soon.

Love, Terry

Angie2U's picture
Angie2U
Posts: 2993
Joined: Sep 2009

Please talk to your oncologist or someone about an alternative Mary. I don't know, but, I hope there is something else that you can take and that you will tolerate better.

Hugs, Angie

laughs_a_lot's picture
laughs_a_lot
Posts: 1368
Joined: Mar 2011

Yes Metformin is for diabetes. However if I remember correctly it also inhibits the spread of certain cancers. So it is up to you Mrs. Gebby but I would reconsider getting back on the Metformin. I would ask for the test that you were advised to get by a previous commenter. Then once you get some answers you still might want to stop Metformin. However, at present it may be an ally you want, especially if it does not have any side effects if you try restarting it.

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

You look beautiful in your new picture Mary! Just sending you a big hug today!

camul's picture
camul
Posts: 2045
Joined: Dec 2010

After my first bout with bc in 2002, I was on Tamoxifen and had such a rough time. I blew up with fluid where I was having trouble walking (25 lbs), hands and feet ankles would be so swollen, my joints hurt,.... Finally he told me to stop. I dropped the water weight in weeks.

Fast forward, Sept 2010, diagnosed with mets. Agreed to try Tamoxifen again. Same thing, swelled up 34 lbs, face neck, hands and feet so puffy, joints hurt! He stopped again after 7 months, talked about Arimidex. He said if I couldn't tolerate Tamoxifen I would not tolerate Arimedex.

Started Evista 3 weeks after stopping Tamoxifen, Not one side effect. It took 3 weeks to drop all the fluid from the Tamoxifen. Ask your MO for other options. I never blamed not taking Tamoxifen on mets. Sometimes our bodies just can't tolerate everything that is thrown at us! I would also ask the odds of recurrence without it.

Glad you are doing well otherwise.
Carol

VickiSam's picture
VickiSam
Posts: 8262
Joined: Aug 2009

Please know that my thoughts and prayers are with you .. and I am positive
that you will get to the bottom of all your side efforts.

Never give in, or Never give up!

Gentle hugs dear Sister,

Vicki Sam

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

I wouldn't even begin to tell you or to suggest what you should do. Any and every decision you make Mary is for you, and, only you know what you want to do.

I would like to send you some special hugs though! I think you need them and I've been told I give good hugs.

Megan

Kristin N's picture
Kristin N
Posts: 1969
Joined: Mar 2009

Mary, you're in my thoughts and prayers. I've never been on any hormone therapy, so, I don't know how bad it is. Good luck!

kacee999
Posts: 109
Joined: Oct 2012

You might talk to your doctor and see about getting an Oncotype DX Gene assay. It's a little expensive (about $1000 I think was on my bill), but it gives you a super pinpoint of the chance of recurrence. 0-10 is low, 11-20 is medium, 21-30 is high. I was a 38. So it was a dead cinch that we'd do EVERYTHING (I opted for a bi-lateral, chemo, rads, and Arimidex). I don't think I have had any side effect from it except possibly nausea (and I take a very low dose anti-nausea pill if I need it). I take mine before I go to bed.

jnl's picture
jnl
Posts: 3873
Joined: May 2009

Thinking of you Mary and sending big hugs!

Love, Leeza

lizzie17
Posts: 528
Joined: Nov 2009

I take Arimidex and I just started year 5!! It is a difficult road, no doubt.
If I didn't promise my two adult daughters that I would do this, I probably would have quit
a long time ago. My #1 side effect is fatigue and then bone pain in my legs.
Someone mentioned the ONCO type DX test, and that was something they did with me.
You may want to ask your doctor about his/her thoughts about it.

So, for you, I am sending hugs and prayers!! Never give up.

madsters1
Posts: 120
Joined: Oct 2011

Hi there, I'm not sure of your exact dx or staging and so forth, so my decision may not be right for you. But I agonized over taking that stuff. I've read and heard of the awful side effects that keep quality of life on an existence level. I had Stage II IDC with micromets in one node. I had a lumpectomy, chemo and rads. Hoorrendous journey! The drs recommendation was a 5 yr hormone blocker. I finally came to the decision that I was not going to take any. Whew! Pressure off! I have peace about that decision. My thought was that I had taken hormone replacement therapy for a year and a half for menopausal symptoms before my dx. I took a natural therapy called biodentical. I don't think it caused my cancer, but I believe it sped up the growth as I am ER+. I realize I'm taking my chances to some degree, but there's no guarantee anyway. I've never been a fan of the medical community, just not a doctor person. My thought is that I'll listen to what they have to say and consider it, but will make the decisions. I'm not "old school" when it comes to doctors. They are not God, they don't know everything.
As I said, I have peace about it. I'm a Christian and the Lord did not give me peace about not having chemo or radiation,which I finished in May of this year.But this one I do have peace about. Hope this helps. God bless you

VickiSam's picture
VickiSam
Posts: 8262
Joined: Aug 2009

How are you doing dear Sister??

Please update us when possible.

Vicki Sam

Megan M's picture
Megan M
Posts: 3001
Joined: Dec 2009

Thinking of you too!

MsGebby's picture
MsGebby
Posts: 659
Joined: Oct 2011

EVERYONE for your support and caring thoughts. I've been depressed in a major way for some time now. So much going on in my life. Cancer has taken a back seat. I just don't care anymore. Arimidex is no longer being ingested. I can't even go there. I don't want to take it. I did promise my husband that I would think about it again after my next scan. Which is on Nov 26th.

Someone wrote I should have the Oncotype DX assay. I did have it. I was told my recurrence is a mere 4% possibility. I didn't know that this number takes into account that a person is taking something to slow the production of hormones. I think the doc said my chances are 38% if I don't take it. I can't remember. Either way, physically, I am feeling better. I believe it's due to not taking Arimidex.

It's been a struggle. But I am trying to move past this episode of my life. For me, not taking a pill that is related to cancer makes me feel so much more alive. It is giving me a chance to move forward.

I know it's like playing russian roulette, but I've always been someone who listens to my body and makes decisions based on how I feel. If I have a cold, I rest, drink plenty of fluids and take cold medicine. If I have a major headache, I take Bayer. I've been told I am in remission. Why do I have to take something for something that is no longer there? I don't know. It just doesn't make sense to me.

Thanks ladies. I will try to stay in the loop and update you. My prayers going out to all of you.

xoxo
Mary

Kylez's picture
Kylez
Posts: 3765
Joined: May 2009

Whatever it takes to make you feel better, physically and mentally, is all that matters Mary. I support you in anything and everything!

Thanks for the update and please just take care of you!

Hugs, Kylez

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