About-to-Start-Hormones Group

KAK

Okay, all my sisters from the September Rads group & anyone else who needs moral support for the Next Big Thing, welcome!

I don't know about you, but I really hate this.  I finished rads just over a week ago.  I'm still red, my armpit still burns, I itch, my skin is alligator-y, my surgery scar is lumpy, my nipple hurts, my breast twinges & I'm so tired when I get home from work, I can just about cook & eat dinner.  Also, my prosthesis is too saggy, even if I turn it upside down, so I gave up on wearing it.  I was just getting over the worst of menopause earlier this year when I was diagnosed with DCIS.  So, now I'm supposed to start taking a drug I don't even know if I can metabolize.   And I might have to switch antidepressants after taking one that worked all these years.  And this new hormone might make me go through menopause all over again.

Other than that, I'm just GREAT!!

And if anyone else who hasn't had breast cancer tells me, "Oh, you're all finished with treatment?  Isn't that wonderful!"  I think I'll deck them.

So, let's all get together to kvetch, share, inform & support each other through the Next Big Thing.

 LOL, Kathi

Ela73484

Hi Kak,

I have just joined recently but, I have been following your Sept rad group since the beginning.  I also started rads on Sept 15th and was about to finish on Monday (Oct.20) after #25, but that was not to be.  The wonderful doctor let me know on Friday  that my margins were not recorded correctly and that I will be needing an extra 8 boosts.  Tamoxifen has also been suggested to me, but am very worried about side effects.  It will be nice to talk about these new challenges with all of you.  

Thank you for all the support you have all given me already just from your previous stories.

KAK

Welcome, Ela! 

A woman on another thread reminded us of a report that was here on bc.org back in June.  It's a different kind of drug than tamoxifen that also helps with us gals who have to worry about bone density.  Here's a link:

http://www.breastcancer.org/treatment/hormonal/new_research/20080602.jsp

I'm supposed to start tamoxifen, too.  However, in addition to this lovely diagnosis, I was also diagnosed this year with osteopenia & with high cholesterol.  Boy, sure was a wonderful annual physical I had this year!!  So, I've started on fosamax, but now I'm thinking of asking my med onc about this Zometa, which is the same kind of drug as fosamax.  It would be nice to take one drug instead of two & get bone & breast cancer protection at once.

Also, I had to start taking Zocor aka simvastatin for my cholesterol & I recently came upon a clinical trial in which simvastatin is being investigated as a possible breast cancer recurrence-reducer.  Interesting!!  So, I emailed them to get more info.  Here's a link to that if anyone's interested:

http://www.cancer.gov/clinicaltrials/JHOC-J0485

I will say, though, that I do know a bunch of women who have taken tamoxifen for years & have done very well on it, with no big SE's.  And we know it does cut our recurrence risk.  So, maybe it won't be so bad.  Still, it's good to have options.  It may be that I can just take the tamoxifen & not the fosamax, because they have found that tamoxifen does help maintain bone density.  They haven't done too many studies of that yet, but I've seen one that suggested that tamoxifen worked just as well as Evista, which is a bone density drug but is also a SERM like tamoxifen & has some breast-cancer preventing qualities, too.  So, onward & upward!

Kathi

Makratz

Hi Kathi,

Thanks for starting this.  I have 6 more boosts left and then on to tamoxifen.  I know I will be on this thread daily to see how everyone is doing in the next step of their journey.

I know what you mean about wanting to deck people.  I'm also sick of hearing that I'm close to the end, it's almost over....  I will think about this everyday of my life!

Anyway, good luck with your hormonal therapy ladies!

kerry_lamb

Hey girls. I finished chemo 3 weeks ago and the clouds are parting! I go back to my onc in early Nov to discuss the bit T. Before then (how many weeks...2.5?ish..) I have to lose weight and get my teeth done. Hmmm.  Anyway, I'm keen to go on this thread; sharing info wilth all the girls is THE thing that got me through the last 5 months. XX

princessS

I'm in too!  Thanks for starting this so we can do this thing together.  I'm sooooo with y'all on the "So aren't you happy it's all over?"  Um, NO, it's not even close to being over!  This will be the hardest part for me.  I have 2 boosts left and I'm done with rads.  My whole area is healing up, can hardly see any color at all.  The fatigue was very minor, if any at all.  Maybe, just maybe, I won't have many side effects with the tamoxifen?  But that would be thinking positive (the piece of advice I hate the worst).  I'll talk to you girls in a week or so.

NancyD

Hi ladies! Well, I've been on Arimidex all through my rads. So far, no SE's except for slightly more  frequent hot flashes. Finished up my last boosts last week.

However, I did develop a UTI this weekend and in a very round about way, I think it might be BC related. Tell me if you think this is far fetched:

While I was on chemo, I was taking OTC Prilosec for acid reflux. Great stuff...it did the trick and as long as I took it I had no trouble. As I started rads, I felt that I should probably get off it for a bit because it does say to take it for 14 days only, and I had been on it for four-five months.

At that time, my onc started me on the Arimidex and suggested I take a calcium supplement. I had some big calcium pills that I started cutting up to take in three smaller doses over the day. But my acid reflux/heartburn started back up again, and I found that I was taking four-to-six Tums or Mylanta pills a day...just about the same equivilent in calcium as my doc recommended. I stopped the calcium supplement and freely took the Tums. I figured I could kill two birds with one stone.

Then the UTI hit this weekend. I read up a bit on the causes of UTI's and part of it is when the urine and other vaginal secretions change from acidic to base, it makes a more hospitible climate for the bacteria. Since Tums and other antacids work by neutralizing acid in the digestive tract with a base, it seems to me that I might have been turning my urethra into a bacteria-breeding place at the same time.

Anyway, I'm on Cipro to clear it up now (tried cranberry juice over the weekend until I could get to my doc).

familyroks

Hi all.  I am also on Arimidex (have been for just a touch over a month).  Its been going quite well.  No SE's except for maybe just a touch of bone stiffness if I sit for too long.  I was already having hotflashes from the chemo tx and don't really notice if its any more with the Arimidex.

Nancy - I am also having to take Calcium with Vitamin D supplements (1200 mg Calcium per day).  I know what you mean about HUGE pills.  The pills broke my pill cutter.  Anyway, certain caclium supplements will cause gas (so I wonder if this is contributing to your reflux)...the ones where the ingredient is calcium carbonate, such as Caltrate.  I had to switch to calcium citrate (which claims to not cause gas) so I am currently taking Citracel Petites.  I have to laugh at the use of the word "Petites" becaues they aren't.  However they are smaller than the others.  I just have to take 3 a day instead of two.  Since I have to do this for the rest of my life, I decided I would suffer with 3 a day versus the stress over a twice a day pill so large I couldn't swallow it.  Don't you wish they could all be as small as the Arimidex??

Skye64

hi all, I am just back from my appointment with my gyn doc....

At first he ordered some bloodwork for checking my FSH-Level. And then he can see if I am pre or postmenopaused. Then he told  me, I should give the Tamox a third chance, maybe the nausea was from the radiation and not from the Tamoxifen. So yesterday I stopped the Nexium and the Xanax....I will see what will happen.....hope my stomach is stable. After the bloodwork I will start with 5 mg Tamox and then increase it to 20 mg......And then he told me, if I can really not tolerate it and I am premenopaused, he will do the oophorectomy. Sounds like a plan to me.

KristyAnn

Hi Everyone!

Im in the single digits now on rads!

Kathi- you can ask yoiur doctor to test you for tamoxifen metabolism. My doc checks everyone before she puts you on it so I would insist on the test rather than assuming you are a metabolizer. I tested as a poor metabolizer so Im facing surgery to remove the ovaries but I guess that beats taking tamoxifen for no benefit!

I see the surgeon on Friday- hes my old gynecologist who delivered my first 4 kids. I have been using a nurse practitioner because I liked the more holistic approach but I always knew if I needed surgery I would go back to him!

Kristy 

Makratz

Kristy,

...."delivered your first 4 kids".!!!!!!!  How many kids do you have????  God bless you!!!  I hope they are all helping you out through this ordeal.  You are blessed!

Annabella58

Hi all:

Just wanted to chime in on the acid /heartburn calcium............BOY does this ever cause it!

My onc put me on something called Encora, I have not begun it yet, I hope it works better than the calcium supplements.  OMG I never had such heartburn (well with chemo I did) but it was awful!  Encora is an RX from your onc containing 1000mg. calcium/800D and omega threes for heart health.  It's broken into twice daily doses.  I'll let you know!'

About to begin arimidex too, sure glad to hear alot of you have not had significant SEs. I was on tamoxifen for 5 years with nothing, no hot flashes, no SEs whatsoever so have big hopes for arimidex.

Good luck to all. 

annie

Skye64

Hi Annie, I got Nexium for my heartburn. And it is gone..I had it really bad, could nothing eat or drink....I do not know, if calcium suppl. does that. I thought I got the heartburn from Tamox. I know a friend she has also bc and is taking Tamox, but she also has heartburn, she cannot drink anything with bubbles.....

Good luck with arimidex

KristyAnn

Makraz- I have 5 kids LOL

Kristy

bee5467

Hi Ladies --

I'm a little ahead . . . dx Nov07:, Mast: 1/18, last Chemo: May 1, last Rad: July 1. Been on Arimidex since July 1, and only major complaint is weight-gain especially around the belly.  Very cute.  Grrr. Some stiffness, but not too bad, really.  All in all, except for the tummy which I hate, it way mo' bettah than anything else having to do with this crap. So far, it's way better than getting bc again.

mzmiller99

Bee5467,

Thanks for the info on Arimidax, as I assume that's what I'll be on shortly.

I guess you're right, fat belly vs bs...guess I'll take the belly! 

 This is so awful to say, but I remember when I was much younger,saying, half-jokingly,how I wish I could get just a little cancer, so that I could lose weight.  You know, the things you say when you're a chubby teen? 

How ironic that I have a little cancer and I'm going to gain weight instead!  Becareful what you wish for!  Now, I'm just wishing to be healthy, chubby or not!

Susan

KAK

Hi, everyone!  Good to hear from all of you.  I work as a PT, as a lot of you may already know, & this Saturday, I will be speaking about osteoporosis prevention & teaching some postural/spinal  exercises at a Women's Wellness Day that our local hospital is putting on.  It's actually really cool.  This all started a few years ago, when they sponsored an evening talk about menopause that I took part in with a gyn & a dermatologist.  It was a smash hit, standing room only attendance, so the next year, they did a whole day for women's health.  For next year, I've already offered to also participate in the breast cancer portion of the program!!

Anyway, I've been trolling the web for info on BC & osteoporosis & found some good nuggets.  Along with finding DCIS during my annual mammogram, my annual physical this year also included a new diagnosis of osteopenia & high cholesterol!  Yikes!  Oh, this post-menopause is just great, ya know??  However, because of my web trolling, I've satisfied myself that by going on tamoxifen, I will be able to stop taking fosamax & I may also be able to stop taking zocor.  So, I'm pretty stoked about this, actually.  Less is more sometimes. 

Here's a good PDF summary about tamoxifen:  http://www.buchholzmedgroup.com/articles/PDF/Tamoxifen.pdf

KristyAnn, I'm sorry to hear that you may be losing your ovaries.  I am calling my med onc this week about that tamoxifen test.  Now that I'm sort of looking forward to taking it, I want to make sure my body can metabolize it.  Here's a link (kinda long) that's been here on the forum about this testing, for anyone who wants it:

http://www.dnadirect.com/patients/tests/tamoxifen/what_tell.jsp?src=google&seg=tamoxifen&prodcut=pgxportal&kw=tamoxifen&mtc=&gclid=CJXLppSiuZYCFQNaFQodjHkSMQ

It's good to hear that mostly those of you on Arimidex are doing well.  NancyD, cripes, talk about adding insult to injury!  Nothing like a UTI to make your day...

Regarding calcium, I found a nice little summary from a cancer treatment site about where & how to get more, both by supplements & by food.  I consume a fair amount of dairy (low-fat milk, cheese, yogurt, etc.) & if you get enough servings of the right things each day, you can cut down on the calcium supplements.  I have trouble taking them, too.  Here's the link:

http://www.cancersupportivecare.com/osteotherapy.html

I have a theory about the fat belly issue, which I've formulated since developing my own little pouch.  This theory doesn't apply to everyone maybe, but it definitely applies to me.  I don't think menopause or middle age or even lower estrogen has anything to do with directly causing more belly.  Personally, when I was going through post-menopause, with all those bleeping hot flashes & night sweats plus the poor sleep, the last thing I felt like doing was working up a sweat at a gym!!!  So, yeah, of course my belly expanded because I was a limp, damp, tired slug!

  Kathi

KAK

Hi, all.  I'm bumping this up with a link on other drugs & tamoxifen:

http://www.dnadirect.com/patients/tests/drug_response/drugs_to_test_for.jsp#2D6

They accidently left zoloft (sertraline) off this list.   This is the stuff that might interfere with tamoxifen metabolism.

Kathi

Skye64

hi there,

I just wanna let you know, that I started with Tamoxifen 5mg before bedtime 3 days ago.

I feel nothing at the moment......I will take 5mg for 2 weeks and then increase to 10 mg....

I am still waiting for my bloodresult of the FSH-level...

Have a nice weekend.

mzmiller99

Is bedtime the usual time to take these things?  i see my med onco this week and I want to be ready with some questions.

Susan

Makratz

I started Tamox 20 mg before bed last night.  First pill.  I guess I was waiting for side effects already.  I got up this morning and was bleeding and thought, OMG, the Tamox made me bleed.  Then I looked at my calendar and realized it was that time of the month.  Just a coincidence.

 Has anyone noticed side effects yet???

NancyD

Susan, I take my Arimidex in the morning just before I get up. It's a holdover habit from when I was taking Synthroid...it had to be on an empty stomach so that was the best time. I get it all set up wtih a glass of water and the pill next to it the night before. Then I have a way to check to see if I forgot to take it if it's still there after I've gotten up.

It only really matters if you have to have an empty stomach or take it with food. Ask your onc what's best for whatever you'll be taking.

mzmiller99

NancyD - I'll probably just add it to the fistful I already take!

Susan

KAK

My med onc is having me take the tamoxifen 10 mg in the morning & 10 mg at night.  She says that in her experience that seems to help minimize the side effects.

I checked my insurance plan about switching antidepressants & they cover Effexor & Lexapro, but Effexor is on the preferred list, which means I'll only have a small copay.  So, tomorrow, Monday, my pcp is calling in a prescription for it & giving me some instructions about switching over from zoloft.  And I soon as that all happens, I'll be taking my first tamoxifen pill.

It's really good to see everyone here.  I feel a lot less apprehensive moving on to this next step with all of us keeping each other company.  I did an osteoporosis workshop yesterday as part of this Women's Wellness Day the local hospital (my employer) sponsors every year in October.  A couple of women I haven't seen or talked to in person since my diagnosis came up to me & gave me such huge hugs & told me how happy they were that I was alive & doing as well as I am.  It was so lovely & touching.  And yet, sometimes, when I'm alone & looking at that bottle of tamoxifen & that jar of Silvadene & putting my prosthesis away, I just feel so lonely & tired of this whole thing, I want to cry.

So, I get on the forum here & I thank God you're all there.

Kathi

shari1232

My onc says no need to split up the dose... but not so from what I've read on this board.  Frustrating.  Guess I'll try just taking the whole pill and see how it goes.  Mammosite rads will be finished Tuesday, so I guess I'll start Wednesday.

Ela73484

Hi ladies, 

  I have my med. onc. appt. on Tuesday.  I need help putting together a list of questions that I might not think of  for her regarding the tamoxifen.  Any help would be great.  

Thank you,

Ela 

Makratz

Ela,

I've heard people talking about how well they metabolize the tamox.  Perhaps you should ask about that.  Make sure you have no history of clotting.

Good luck with your appointment.

Ela73484

Thank you Makraz, I will add that one to my list and I do not have history of clotting problems.  

Ela 

KAK

Hi, ladies.  I just took my first tamoxifen pill, 10 mg!!

I've read elsewhere that for those of us who may be worried about blood clots that we can take a baby aspirin each day (81 mg) or even half a baby aspirin, which will prevent clots from forming.

I'm not at particular risk for clots, and actually tamoxifen will hopefully reduce my risk, because it does lower cholesterol.

Here's the link to the metabolism test again.  I will be talking to my med onc about ordering that test.  Not all insurances pay for it.  It's $300, and I might cough it up if my insurance won't cover it just to know if I'm getting all the benefit I can from it.

http://www.dnadirect.com/patients/tests/tamoxifen/what_tell.jsp?src=google&seg=tamoxifen&prodcut=pgxportal&kw=tamoxifen&mtc=&gclid=CLeesMKk_ZUCFQIWFQod8lGGEg

Yay, Shari, you're almost done with rads!  I need to check the Mammosite thread, but how's it been going?  I wanted to do that but my post-lumpectomy cavity was not the right shape so I couldn't.

Kathi

KAK

NancyD, how's the Arimidex so far?  Kathi

bee5467

Kathi --

I was very pleased that my insurance paid for all but $30 for my Armidex.  I was prepared for a $300 bill, but it was only $30.  I'm hoping you do as well.  I'm new here, but I've read here quite a lot.  So glad I finally found you all.