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csp

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Reply with quote  #1 
I just started on Tamoxifen last night and I was wondering
if anyone else is on a chemopreventive . I thought we could  support each other through side effects (although I am not reading the patient information pamphlet as I am the type of person that will think I have all the symptoms lol)

I'm very excited to know that taking Tamoxifen for the next 5 years reduces my risk of developing an invasive breast cancer by 50%, I'm just kinda nervous about the med.
A very wise person, (her initial is G) said take it at night before you go to bed and forgetaboutit. So I did. lol

Hgs,
Carrie

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courage does not always roar. sometimes courage is the quiet voice at the end of the day
saying.. i will try again tomorrow.
~maryanne radmacher
wedsnthings

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Reply with quote  #2 

Hi Carrie, I started Arimidex this week and I am also taking it at night. I hope I don't go through side effects too bad but I have to give it a shot. I hope all will be well with you we  have already been through the hard part.


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NATALIE
csp

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Reply with quote  #3 
Hi Natalie,
No sweets, you have been through the really hard part. I have never done chemo. My dx is Multifoca LCIS. My sister is on her 4th year of Arimedex and she is tolerating well. Do they have you on Calcium and D too?

Hgs,
Carrie

__________________
courage does not always roar. sometimes courage is the quiet voice at the end of the day
saying.. i will try again tomorrow.
~maryanne radmacher
SapphireSky

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Reply with quote  #4 
Hi Carrie and Natalie ~ I will start on Tamoxifen next week, as soon as I receive the pills from my prescription service.  So, I would be thrilled to be able to go through the journey with others just starting out! 

Carrie.....I totally agree about being able to do something to knock BC on its butt, and I also am really nervous about even starting to take Tamoxifen.  You just hear so many bad stories about the side effects.  But I think it was the Uber Wise One named Gina who told me a month ago that you really only hear from women experiencing the bad stuff associated with the drug and not the ones who are doing well on it.  That gives me hope!  Also, my oncologist told me that if I experience ANYTHING with the drug, to give him a call and if anything can be done about the SEs we will do it. 

So, I'll definitely keep checking back.  We can do this! 

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"There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as if everything is."

[ albert einstein ]
wedsnthings

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Reply with quote  #5 

Hi Carrie and Sapphire. So far nothing bad has happened so I guess I'll be ok. You both will be ok also. I'm taking a multi vitamin and magnesium. My onc says if I should have any problems to give a call. I haven't even noticed any extra hot flashes!!! Hope you both have a wonderful holiday weekend.


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NATALIE
SapphireSky

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Reply with quote  #6 
So good to hear you are doing well so far, Natalie......I truly hope you keep it up!!

I am already on Os-Cal and low dose aspirin to prepare for taking Tamoxifen.  I also have some liver enzyme issues, so my onc has ordered blood tests weekly for the first month, then every month for 6 months to catch anything goofy going on with that.  I won't be taking it at night, though.....I already take one heavy hitting drug at night and other not-so-bad ones in the morning, so I have to figure out the logistics of when to take what.

I just finished radiation on Tuesday, so I am still trying to recover from that.  I tried to go to the grocery store today and ended up sitting down while my husband finished it up because I was too tired.  I really hope that ends soon!

I really dread the hot flash thing if it happens!!


__________________
"There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as if everything is."

[ albert einstein ]
csp

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Reply with quote  #7 
Hi Sapphire and Natalie,
I have been busy the past couple of days. So happy to see you both here ( well you know what I mean LOL)

Sapphire rads made deese tired too. She was a while getting her energy back. I need to go back and read what both your Dx and Tx were. Sapphire did I read this was your second round with the beast? I was already on low dose aspirin too.

Natalie hope you are still doing okay did you do rads too?
Did your onc have you do the dexa scan before you started the Arimidex?

I thought for sure I was menopausal before I did the fsh
I have been having night sweats on and off for awhile but nope !
test showed my estrogen is elevated. I had a hysterectomy
a few years back, but still have one ovary I guess the one I still have is going strong .

Okay so my onc didn't put me on any supplements for bone loss and of course like a dummy I didn't ask. I go back in 3 months for another squash-o-gram and to see how I am tolerating the Tamox so I'll ask then.

You both are probably so tired of telling your DX and TX but
tell me about yourselves and your journey, Do you have family, If you don't mind?

Hgs,
Carrie




__________________
courage does not always roar. sometimes courage is the quiet voice at the end of the day
saying.. i will try again tomorrow.
~maryanne radmacher
SapphireSky

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Reply with quote  #8 
Yes, this is my second journey with BC.  Here's the shortened version:  I was diagnosed with right breast DCIS in 4/03 when I was only 44 years old and had a lumpectomy/radiation. This time I was diagnosed with Stage I, Grade II invasive ductal in left breast, and had another lumpectomy/radiation.  I had an Oncotype DX test, which determined that chemo would not be very beneficial (this is the only test I have taken in my life that I was sooooo happy to get a low score on!!).  This time I was ER+/PR+/Her2-.....thus the Tamoxifen.

Maybe someday I will regret not having a mastectomy, but right now I am really good with the decision.  Both cancers were very tiny. 

I hope my energy level increases soon.  I am still taking naps everyday because I can't quite make it through an entire day yet.  But the soreness is decreasing a bit, so that is a plus.

Carrie, I've had a hysterectomy, too.......and still have both ovaries.  I think I remember my oncologist saying my estrogen level was 45 (??) but I could be wrong.  I read that you came here because your sister was diagnosed with BC, then you were diagnosed!  What a journey you've had!

Okay ladies, hope you are both still doing well on your respective therapies!!  Have a great day!

__________________
"There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as if everything is."

[ albert einstein ]
csp

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Reply with quote  #9 

Hi Sapphire,
Thank you for telling me about your journey. I think that
we all do what is best for ourselves. It is personal and
no one else can make that choice. My sisters choice was
to do partial mast left side she was 46 . She had a 3.7 IDC that attached to the chest wall and vascular invasion.She did dose dense AC&Taxotere 36 rads  with 6 boost and is on her 4th year of Arimidex.
Don't push too hard Sapphire if you are tired rest. You will recoup much better and sooner than if you try and push yourself too much.

Our mother was dx'd with uterine cancer stage 2 before she was 30. So when I started having trouble with pain and bleeding and grew a big ole fibroid and endometriosis they
did the Hysterectomy and I haven't regreted that for a minute.

I am not a fan of surveillance and lets watch that. I felt like I was always waiting for the other shoe to drop. I saw what family members and my sister went through and I swear I don't know that I could do it. A couple of years ago I had
a wide excisonal that was ALH&ADH same breast left upper quardrant ( so we watched it) then a year later same breast and same area multifocal LCIS. Scared the you know what out of me. I went to Ohio State for a bilateral and while I was waiting to go back for surgery I had a asthma attack. Surgeon said he did not want to put me under for 7 to 8 hrs and canceled the surgery. I have not been able to gear up for it again. I feel like a baby,and I hope I don't regret my decision to do the tamox and alternate mammo and mri. But that is where I am.

So far I am doing fine, no side effects but I think the effects may be accumulative or maybe we will have very tolerable ones or hey lucky and none! I chose none. lol

Thinking about you Natalie hope you are doing okay.

Carrie



__________________
courage does not always roar. sometimes courage is the quiet voice at the end of the day
saying.. i will try again tomorrow.
~maryanne radmacher
wedsnthings

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Reply with quote  #10 
Carrie I just lost my very long post. I will retype it in the morning I hope everyone ejoyed the holiday.

Be Blessed

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NATALIE
wedsnthings

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Reply with quote  #11 

Okay I'm going to try again. I was dx in Aug of 2008 and did not tell anyone for a few weeks. I had a 3.cm lump in my right breast hr+pr +. I chose a lumpectomy  had naother surgery to get clear margins 2 weeks later 2 nodes were positive. TX was AC+Abraxane X4 then 6 1/2 weeks of rads, now on arimidex and so far so good but I don't sleep well at night. Otherwise I'm doing great starting to get my energy back (slowly). I still nap during the day but I have done that since childhood. It just works for me. I have 2 grown children a boy 26 and a girl 23. I am in a lond distance relationship and that works for me for now. I got laid off during tx and I'm starting to look for work again but slowly because I would like to see where my new normal will be before I into a job situation. I hope today is a great day for everyone. take care.


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NATALIE
csp

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Reply with quote  #12 
Hi guys,
Natalie were you her2 positive? Are you able to do Herceptin?
or did you mean your were er/pr + Deese, my sister was er/pr+ her2-. I have 4 grown children 2 adopted and 2 step and 7 grand kids. Your kids are around the same age as my
2 adopted children 25 and 26. I also told deese about you just starting on Arimidex, she said that at first it was a little rough and she also had sleeping issues but never did figure out if it was lingering after effects of treatment,lack of hormones or the Arimidex. She told me to tell you that all though she did have some SE none were bad enough to stop the medication and that they went away after a time. She said that she  hopes the same for you.

Yikes Sapphire ! I'm glad that you were able to opt out and
also that your cancer was small. I was the on the family member side of this journey more times than I ever wanted and it is so very hard to see some one you love go through this stuff. My sister was so sick during treatment we spent more than one night in the er . I felt completely useless, and didn't know what to say either and tried not to cry in front of her. I self appointed myself as soup maker and googler. As a joke her DH and I tell her, her chemo was really hard on us.

Okay speaking of sleeping I have been waking up about a zillion times during the night lately, no night sweats just waking up thinking why the heck am I awake? Luckily I go back to sleep.

Hgs,
Carrie

__________________
courage does not always roar. sometimes courage is the quiet voice at the end of the day
saying.. i will try again tomorrow.
~maryanne radmacher
wedsnthings

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Posts: 102
Reply with quote  #13 
Hi All,

I was her-. I do beleive the lack of sleep is the arimidex. I hope to get it together soon. Have a great day ladies.

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NATALIE
SapphireSky

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Reply with quote  #14 
My husband has been through cancer with me twice along with a whole pile of other health stuff, and has always said that it is hard to be the one standing beside someone who is sick.  He said that most of the time he feels so helpless.  So, I completely understand how you felt with your sister, Carrie.  You might be joking with her, but part of that is really true.  Of course, not to take away from the person who is actually going through chemo!!!

Your journey with wanting to do surgery and then not being able to must have been hard, Carrie.  The decision was kind of made for you at the time, but I hope you are finding some peace with all of it.

I had painful fibroids that just were not shrinking and ended up in the ER one night in excruciating pain......then had a hysterectomy.  I don't regret that AT ALL either.  A good friend who is in her mid-50s constantly reminds me how good it must be to not have a period, etc., anymore.  I am just thankful I don't have any more pain.

I also have grown children aged 25 and 22.....so all of our kids are around the same age.

I am sorry that both of you two haven't been sleeping well lately.  Hopefully this SE will wear off in time, and the sleeplessness will go away.  At least you are able to get back to sleep, Carrie.  That is something anyway.

I am still fatigued, and still dealing with redness and a bit of soreness because of the radiation.  I hit a wall in the middle of the afternoon, and resting while listening to music really does the trick.  Usually I fall asleep for a little while, too.  I am trying to stay in tune with my body.  So good that you take daily naps, Natalie, and understand what your body is saying to you and what it needs.

My prescription of Tamoxifen has not arrived yet, so not sure if I will even be starting it this week.....maybe the beginning of next week?  And just for the record, I choose NO side effects, too!!!!

Stay well and have a great day!



__________________
"There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as if everything is."

[ albert einstein ]
csp

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Reply with quote  #15 

Hi Natalie and Sapphire,
I hope you both are doing good. Remember rest when you need to and don't push. Your bodies have been through alot
surgery, treatment and the pure mental aspect of this crap is alot. It takes a while, I promise my sister is doing good now
and you will too.

Natalie I have seen what you went through. I think it is a very good idea to take it easy and let your body and emotions recover and see how the Arimidex is going to effect you. Deese said she felt like a little old lady in the morning so sore and stiff when she first started the Arimidex. Are you having problems with that? I hope not. deese took awhile to go back to work too. Her hair was coming in like a short cute
style when she did go back.

Heres a pic with her permission when I dyed her hair
 I think she is beautiful hair or no hair. Her hair came in a non descript grey/brown and I colored it for her RED! lol Thats what she wanted!



Sapphire I am still doing okay .
I'm glad you understand when I said that to deese, it is to make her laugh. Her treatment was very hard on her, and her DH and I worried ourselves silly. I took a family leave of absence from work so her DH could work .

Oh lord do I know what you are talking about with the pain 24/7 and nothing helped except the surgery. Hope your meds come in soon.
The idea of taking tamox at night is working out well for me.

Hgs,
Carrie


__________________
courage does not always roar. sometimes courage is the quiet voice at the end of the day
saying.. i will try again tomorrow.
~maryanne radmacher
SapphireSky

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Posts: 84
Reply with quote  #16 
You definitely have to keep your sense of humor intact when you face BC! 

When I was receiving radiation, the rad techs commented on what a great mood I was always in and how I'd kept my sense of humor.  That was really important to me because every once in a while, if I let myself, I can dangle above the Black Hole of Dispair......and it is much better to have a "it is what it is and let's get on with it" attitude. 

So you are one sweet person to make sure your sister still could see your sense of humor to help her through the dark days!  Lovely photo of her, by the way.  I LOVE that she wanted red hair!  Spicy!! 

I am bone tired today, so this may be a more restful day for me.  I've been trying to do too much the past couple of days and it was not a good thing.  I still need to find a good balance.  I think some online shopping may be in order!  What do you think??

Have a great day, ladies!

__________________
"There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as if everything is."

[ albert einstein ]
csp

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Posts: 1,940
Reply with quote  #17 

Hi guys,
 Just stopping in before leaving for work to check in on
you both. I hate working on Sat.

Sapphire online shopping is good for what ever ails lol. What are you using on your burns?

Natalie I was awake again last night and had a hard time going to sleep. My hiney is dragging today. Good thing I only have to work half a day. A nap is all I can think about this morning. I was tired yesterday too and tried to nap after work  but I couldn't fall asleep then either *sigh* I hope this sleeping thing resolves soon.

PS if any veterans are reading and had sleeping issues with
the chemopreventives please hop in and tell me what you did for it or is this just me not sleeping well for some other reason?
Is their some natural vitamins that won't interfere with the Tamox I can take to help?

Hgs to you both, hope you have a good weekend.

Carrie




__________________
courage does not always roar. sometimes courage is the quiet voice at the end of the day
saying.. i will try again tomorrow.
~maryanne radmacher
Calico

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Posts: 2,525
Reply with quote  #18 
Hi girls,
Femara taker here for 3 years now, but reading with interest about Tamox, since my mom takes it and just had possible sideeffects too.

As for bone pain, I swear by Fish Oil Omega 3 and Turmeric 2500 mg/day, Vit D 4000 mg day, without it I sqeak and creak and even my feet (all parts of them) hurt.
I tried many times to see if I imagine but I think it is so very much helping me especially together vs. Omega 3 only or Turmeric only.
As for sleep, all I can say is Melatonin and a quite place for you to rest. I only take 12 mg, I have that fear of sedating me (with no merit but it's there...).

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wedsnthings

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Reply with quote  #19 
Hi Ladies,

I hope everyone has had a wonderful weekend. I don't know if I am having problems sleeping this week end I have partied the whole time. I felt like celebrating and did I have a wonderful time. But Carrie I have been having a cup of Sleepy Time tea befoe bed lately I think it helps. For everyone that is back to work have a geart week and I'll be checking back in a couple days.

Take care all

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NATALIE
csp

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Reply with quote  #20 
Hi everyone,
Good for you Natalie you partied like a rock star! LOL
I checked out the drug interaction with Chamomile and Tamox
and it looks like there could be interaction so no chamomile.
I'm still having the sleep or lack of going on but I do fall back to sleep just waking up a zillion times.

Cali thanks for stopping by does Edge have any info on this and tamoxifen? I hate to take meds.

Sapphire did your meds arrive yet?

Hope you both are doing well .

Carrie

__________________
courage does not always roar. sometimes courage is the quiet voice at the end of the day
saying.. i will try again tomorrow.
~maryanne radmacher
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