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Arimidex help
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sadblossom posted:
Hello everyone. It has been a long time sense I posted here. I apologize for that. I guess I got caught up trying to just be normal.
I am thinking that some of you will remember me tho.

I do have some questions that I need some serious help on.
I am now at my 3 1/2 yr mark of taking Arimidex. There is no way that I can say that I am 100% sure my problems are from Arimidex but I am
quite confident that they mostly are.

I have gained 40 lbs sense I started this journey. My feet and legs swell and feel heavy. Every joint.,bone and muscle I have ache all the time.I do mean all the time. Due to lack of hormones I now have pelvic muscles prolapse. What fun! Not!
I am so fatigued I can barely walk from room to room. I get very short winded and my heart will pound sometime. Can be frightening at times.
I kid you not that the only thing I do is buy my grocerie witht he help of my husband. That takes all the energy and strength I have and it last for days afterwards. I stay at home and have hired a housekeeper. can't even clean my own house.
The past few months I get nauseated when I move around much.
I am just flat miserable.And yes I have told my doctors. All of them and they kind of blow it off and say to stay with the pill.I know I can quit it on my own at any given time but I have been afraid to. But at the same time this is getting to be to much to bare.

Has anyone encountered any of this? Can anyone post me sone encouraging words. I am afraid that depression is setting in and no one seems to hear me.
Can anyone help?

I hope you all are doing well.
Sadblossom
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Shell1007 responded:
Hi Pat,
Good to hear from you ! At lot of the old members don't post here anymore because web md got rid of Haylen - with no warning, right after Christmas last year. Nobody got to say good bye
How is Tater Tot doing ??
And on to the Arimidex. I was on tamoxifen after my surgery for a year & then the Dr switched me to arimidex. I have all the same complaints as you, weight gain, no energy & aching bones & joints. Oh and the horrible hot flashes too.
I am going for my 6 mos check up on Monday. I have decided to discontinue the arimidex. I would rather go back on tamoxifen if need be. The last year and a half have been miserable, to say the least. For me, I think the quality of my life is more important. My tumor was very small & had not spread to lymph nodes & I did do radiation.
I have complained to my Dr in the past about weight gain, etc & his answer was "you gotta get moving" Yeah, sure, when you ache so bad, how are you supposed to do that? He had actually prescribed an anti depressant to help with hot flashes but I was not able to take it because it literally made me sick, like I had the flu.
So I am going to be more assertive this visit & do what I feel is right for me. I would like to start enjoying my life again !
I don't know if my rambling on will help you, but I just wanted to let you know that you are not alone.
Take care & I hope to hear from you soon.
Shell
 
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rachael67 replied to Shell1007's response:
Pat and Shell...Just a little note to tell you both I do peek in from time to time and look to make sure folks in need are not being ignored or made to feel alone and that nobody cares about them!

There was much behind the scenes drama concerning the loss of our mods as well as the total lack of respect shown to all members by WebMD...It turned most of the old gang totally off so they are seldom if ever seen here.

I am sorry for any issues you continue to face, and send best wishes and support your way always!

Blessings.
Rachael
Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
 
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jenna291 replied to rachael67's response:
Hello to all my old friends. It feels like a reunion to see your names here and I do miss the old gang....
Pat, I have also been on Arimidex now for about 3 years. My bone aches and pains have lessened, but when my calves and legs act up, I am miserable. I feel like heavy weights are on each leg and it is hard to motivate myself.
I too am unsure if it is the Arimidex, something I must live with from having chemo - I had taxol which caused symptoms like neuropathy and a lot of bone pain. There just aren't enough studies that show long term effects about these drugs.
I had my oncologist visit last week and was initially told a total of 7 years for meds. I had tamoxifen for 2 1/2 years until they were sure I would have no more periods, then switched over to the Arimidex.
I am now told that new information suggests the meds are more effective for a total of 10 years. I am bummed to hear that, as I was hoping to feel "normal" in the next 2 years, but that being said, I am here and hope that I can continue to mange the symptoms. It is really difficult no knowing for sure where these headaches and pains come from, but the side effects from Arimidex list everything we talk about. Also, the vaginal dryness can be miserably uncomfortable.
I just wanted you to know you are not alone. I do find if I can make myself move around, which is not easy some days, it does help with the pain. Because Arimidex can cause bone loss, I do try and walk to keep myself limber. I stay hydrated, eat the veggies, but who the heck knows? I know people that don't take care of themselves at all and never have to walk this walk. Not having answers really is tough. I don't think the docs know enough, and I do love my oncologist, but sometimes feel she really cannot relate without having experienced these pains.

I don't come on here as much as before either, but do check in and it was nice to see your name, but I am sorry you feel so lousy. I hope your doctors can come up with an alternative plan for you.

best to you always ~
Jenna
 
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sadblossom responded:
Hello Ladies!
Sorry it took me so long to return here, 'again'.
I don't understand why Hayden would have been taken off!
I have missed so much. Where did everyone go? Have they
moved to another site? Gees, we must have an active site. To many of us depended on this. We never know when we may NEED a meeting place like this again. Has anyone considered a Facebook site? Does anyone know how to find the other members? Even if all members just 'blogged' among themselves it would be better than nothing. This is very upsetting to me.

Thank you for your replies. Yes Shell your post did help and so did Rachael and Jenna's.
Tatertot is doing great! She is healthy other than allergies.And
is quite smart. She is making a nice house pet.

Shell how did the check up go? What info did they give you and what is your plan now? I go back a week from Friday, On Oct 4. I am getting mammos once a year now and one is due on that day along with the bone density test. But I still do go for lab and check ups every six months. I so dread it all tho. I always do. I am always so afraid they will find something new. It almost makes me sick to think about it. Dread Dread Dread,

On my last labs with my primary physician my thyroid pill have to be increased because my thyroid is wayyyyyy to low.I assume the Arimidex is blocking the Synthroid from working. He increased the dosage and I go back in 2 weeks to see how the increase is doing. I don't know what they will do if the Arimidex prevents the Synthroid from working at all because we all know we HAVE to have the thyroid function.

I sure hope to hear from you all very soon on here at least until we can decide on a future place to have our discussions.
In the mean time email me.......pgjohn76@aim.com . Mark it WebMD in the subject line.
Good to hear from you all and thanks so much!
Pat
 
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rachael67 responded:
Pat,
Have emailed you!

Rachael
Just when the caterpillar thought her world was over, she became a butterfly! Don't give up five minutes before the miracle!!
 
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jenna291 replied to rachael67's response:
Pat, I had also emailed you. I hope you saw my message.

Wishing you many blessings and pain free days -

Jenna
 
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susan1240 responded:
Dear Sadblossom and others,
It has been a LONG time since I posted on this site. I miss all of the wonderful women who share so much ... breast cancer changes a lot about a person. When I saw your discussion about Arimidex, I thought I'd add info. about my experience. Like you, I've been taking Arimidex for 3 1/2 years. Had a double mastectomy on Oct. 5, 2009, chemotherapy, then later delayed reconstruction. (silicon implants) Constant pain STILL ... but that is another story related to reconstruction. Like you, I have gained weight ... about 20 pounds! My fingers and ankles appear swollen when I wake up in the morning and throughout the day. Because of dryness, sex can be very painful. My oncologist wants me to stay on Arimidex for 1 1/2 more years, but am hearing that the doctors now recommend taking it for a total of 10 years! Right now, I'm cancer-free and am grateful ... 4 years since my diagnosis of stage 1 and 2 Lobular bc. (both breasts) Luckily, I'm retired and can be home most of the time. Don't have much energy .... just do the minimal around the house. My son and husband have been so loving and supportive ... they seem to just accept the "new" me. Hope this has helped ... I don't feel the aches and pains that you and others describe ... just horrible pain/fluid build-up under/ around my implants!! Please know that you are not alone ... you have the understanding of so many on this site. Keep in touch ... have missed all of you "oldies but goodies." : - )

Love, Susan
 
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cindy12345678 replied to susan1240's response:
Hi ladies! So good to see you all here! I too have been
wrapped up in getting my life back, I was on tamoxifen
until no more periods. I gained 20lbs on tamoxifen.I had
painful sex and constipation. the aches are the same ones
I had from chemo. My feet and ankles.exercise is the only
thing that helps me with fatigue.
they put me on Femara (Letrizole)so far the dryness is
not always as bad, some better days some not. Not getting
any new pain. the constipation is worse. I get some nausea
no warning,thats happened 4 times now.
She told me if I did not tolerate it , we could switch or go
back to tamoxifen. but so far not too bad. I still have the
20 lbs. I start out with good energy then it goes down
toward evening. I still work full time so that wears me out.
Susan, don't give up. I think they need to work harder
to figure out a solution.
Hang in there everybody!
Cindy
 
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susan1240 replied to cindy12345678's response:
Hi Cindy and others,
Good to hear from some old friends ... Cindy, You and I need to lose those 20 pounds but it's going to be difficult with the holidays coming soon! : ( I don't walk as much in the cold weather ... might have to walk at the malls. Am so proud of you for continuing to work full time ... no easy task. Sometimes, though, it helps to have distractions to get one's mind off whatever the present ailment is! My fluid build up in the whole chest region (under the implants and down the torso) is driving me crazy ... but I don't want the implants out yet. No guarantees that I will be pain free. Am frustrated that the tests (last CT scan was in Jan. 2013) don't show fluid build up and to me it is so obvious. The doctors are "calling" it nerve damage because they don't know what is truly causing the pain. Only people who "walk in your shoes" can relate. Would love to hear more from you and others on this site. We're all here but have different issues. Am thinking of everyone .... hang in there.

Love, Susan
 
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cindy12345678 replied to susan1240's response:
Susan,
Hi , so glad to hear from you. I too get some aches and
pains. I think some of us get more feeling back than others.
Mine is patchy I'm thinking your level of feeling is more than
mine. It might be a lot of nerve pain and plus fluid buildup
and scar tissue. My Ps keeps a check on me for scar
tissue. I am supposed to massage them daily, but I move
my arm an extreme amount at work ( too much). But its
about balance for the individual . I know that massage
can break down scar tissue over time . If that feels
good to you I would have them prescribe some deep
massage. Have you considered acupuncture? I know
there are meds for nerve pain but I don't know about
side effects. You would have to talk to your PS, but I
think they can remove scar tissue. I think that is why they
tell you that it probably won't be a one time deal with
the implant. Maybe a smaller implant or the surg where
they can use the 20lbs. I didn't have the extra weight
to begin with. If mine bother me I'm not sure what I
will do.
I think of everyone too! I'm with you! Hangin in there!
Cindy
 
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susan1240 replied to cindy12345678's response:
Hi again Cindy and everyone,

For the pain, I HAVE tried acupuncture ... didn't work. Also was on Neurontin for about 2 years ... didn't seem to make a difference one way or another, so got off it. Tried physical therapy for almost 2 years ... the massage and tens unit felt good at the time, but the exercising hurt. The pain clinic doctor gave me shots of Botox and another steroid .... they didn't work either. Hydocodone seems to work for a short time ... just take 1 a day, sometimes 2 if I have to go out in the evening ... I understand the implications from too much of that drug, however. ( it's in the media about every day!) My Mentor, smooth, silicone implants are only about an "A" cup ... that's okay with me. I was an "A" cup before I had a baby, then, with weight gain and nursing, I jumped up to a "C!!" After the reconstruction surgery, I lost about 30 pounds ... but that was because I was in so much pain, I didn't have an appetite. Am still in agony with the constant buildup of fluid in the entire chest region and also the poking sensation that goes with it. My last "test" was in Jan. 2013 ... maybe one of these doctors will okay another one. Previous CT scans and MRI's show "normal" breast with implants ... no fluid, no scar tissue. Go figure!! Does anyone on this site have similar issues with pain/discomfort after breast implants? Would love to start a dialogue about this. I realize I can have the implants removed, but there are no guarantees that the pain will go away. Every woman on this site has "issues" about breast cancer ... that's a given. Hang in there everyone ...

Love, Susan
 
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cindy12345678 replied to susan1240's response:
Susan,
Wow! You have been through so much. I hope that you
get some relief. Having them removed may not do any good.
I get some poking , I get sore around them sometimes.
I think you have a lot of feeling. I'm numb in a lot of spots.
I hope the docs can figure it out.
I hope the best for you!
cindy
 
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susan1240 replied to cindy12345678's response:
Thanks for your support Cindy. I take it one day at a time.... distractions do help. Am having difficultly making a decision about having the implants removed. (my husband wants them removed!) It is such a drastic step and life changing. Like I said before, everyone on this site has their own individual issues. Sometimes there are shared issues/concerns, but each woman is different. Hope you enjoy the weekend. "Hang in there."

-Susan
 
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cindy12345678 replied to susan1240's response:
Susan,
Yes, I agree . Distractions do help. Cancer is stressful,
after cancer can be stressful too. We are left to deal with the
aftermath. They are like"your done now" but then we are
really not. It sound like you have great support from your
husband. That's a tough decision. My hubby and I have
talked about if I have to have them removed. Would I
have them put in again? In my situation they look pretty
good. They look good in clothes but they are not real
breasts. Maybe you would consider some of the real
tissue options?Alot of surg I know.If I have mine out I
would just use breast forms.Right after surg I didn't
use any breast forms. I wasn't big in the first place
If anyone noticed they didn't say anything. I guess
bottom line is how you feel about it. Being honest the
only time I miss them is in the bedroom. I still cover
up with lingere.But that's me not him.
I hope you are having a good weekend!
Cindy


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