Topic: Bottle 'o Tamoxifen

Nov 26, 2007 01:24PM conniehar wrote:

Hi Basha -

I just started last week.  So far, so good.  I can't say I have experienced any side effects.  My onc told me that many women swear it causes weight GAIN so now is the time to be vigilant about diet and exercise.  I just keep staring at the pharmacy sheet where it says "hair thinning".   I had chemo and seriously want my hair back.  Now I'm worried that this will slow or stop that growth.

Nov 26, 2007 02:18PM - edited Nov 26, 2007 02:19PM by karol61

Hi Tamox sisters,

Before BC,I had bad hot flashes daily +night sweats. I was already in menopause due to a complete hysterectomy + oomphectomies. My onc wanted me to take Tamox because it does not reduce bone density. He also started me on a Catapres patch before I started Tamoxifen. Catapres really reduced the hot flashes/night sweats. I started Tamox in July after I finished rads. So far as annm said "it's nothing that would stop me from taking it."

Nov 26, 2007 03:33PM Harley44 wrote:

Hi there,

I have been taking Tamoxifen for ONE week so far...  I guess things are going ok so far, but it has only been ONE week! 

It was kind of warm here, and I have been feeling kind of warmish, so I hope they weren't hot flashes.  I am sure they will start soon though.  

I was taking HRT for premature menopause, because I was dx'd at age 35 with Premature Ovarian Failure, due to Auto immune issues.

So it looks like you, Layne, Connie and I are starting all at the same time!!  We'll have to keep each other posted on how well we are doing.

Good Luck to all of us!

Hugs

Harley

PS  I am really nervous about the risks of uterine cancer/endometrial cancer/ovarian cancer...  I am so scared about this, that I am thinking of having a hysterectomy, so I won't have to worry about these risks.  What do ya'll think?

Nov 26, 2007 04:55PM - edited Mar 19, 2008 11:19AM by TenderIsOurMight

Just wanted to wish you all well as you start your Tamoxifen journey!

Looking back to my year on Tamoxifen I feel I tolerated it pretty well. I had some hot flashes, some weight adjustment actively fought off by exercise, and some mild swelling. I think if I had to choose between Tamoxifen and my AI, I would choose Tamoxifen on the side effect profile. Hopefully if you need additional hormonal therapy years from now, they will have ironed out some of the AI joint pain issues. Hopefully. Lastly, the risk of uterine cancer is low with Tamoxifen, and about 20 % of it's users in a large study had any bleeding disorders.

Good luck to you all, it's nice to see you joining up together.

Tender

Nov 26, 2007 05:50PM Member_of_the_Club wrote:

I've been on tamoxifen for two and a half years. At one point I gained a bit of weight, went on a diet and lost it and more and now weigh less than when i was diagnosed with cancer.

I think it is neutral for weight, but its nice to have something to blame it on. If it pushes you into menopause, that will cahnge your metabolism.

Best of all, it kills cancer cells. So take it with gusto.

Nov 26, 2007 08:26PM - edited Nov 26, 2007 08:37PM by Harley44

Debbie,

What do you say we start a new thread... starting Tamoxifen in December?  Since November is almost over.... Where DID this year go??? 

Harley

Nov 26, 2007 11:38PM Cynthia1962 wrote:

Is anyone getting a baseline endometrial biopsy or ultrasound?  It was suggested to me, but I'm curious if it's really necessary.  In fact, I'm hoping my cycles start back up, so it won't be an issue.  

Cynthia 

Nov 27, 2007 07:31AM my3girls wrote:

Cynthia...I had the hot flashes before tamox...they have increased just a little...I have to say, I think I am getting used to them now.  I had my last period back in April, one month after starting my chemo, no signs of it coming back. My oc said I was probably in early menapause..and I may not get them back at all.  So I guess we have to get used to the hot flashes!  The only good thing about them...in Ohio..it's cold right now..so they keep me warm! haha

xoxo

Lisa

Nov 27, 2007 08:32AM ashaby wrote:

Hi Everybody, current and future Tamoxibuddies,

It really does say on the flyer that weight loss is a possible side effect. Says not a thing about gain. So cool. I start on Dec 2 because on Dec. 1, I'm having a party to celebrate friends and health. We will be serving chocolate cupcakes with pink icing and raspberry nipples. Join me virtually.
Layne, big kudos for finishing your radiatio, you ferocious warrior.

XXX Basha

Nov 27, 2007 10:35AM my3girls wrote:

Layne...I am between Akron and Cleveland...city called Wadsworth.  Been here my whole life.  I have a nephew in Dayton...he and his sister went to UofD.

I understand the whole weight gain, working out problems!! I used to go to a gym and run, etc.  I can't afford the gym any longer..and I do miss it!  I ran until this cancer hit last winter.  I have tried to walk 3 miles at least 3 or 4 times a week through all my tx, except for after my surgery.  I am just anxious to get somewhat of my old body back...haha...if that is at all possible??!!

Good luck to you and your new training program!  Start on the new you healthy eating now...I had too..cause like you...I was eating too much...because I had cancer...easy to do!

Best of luck to everyone!

xoxo

Lisa

Nov 27, 2007 01:56PM lisettemac wrote:

I am also taking my seat on the Tamoxifen train!  Actually, I've been taking Tamoxifen for several months now -- maybe 5 months?  I would definitely not say I've suffered any weight loss.  If anything, I'd say it has slowed my efforts at weight loss, though it's hard to figure out which side effects are due to the Tamox and which are due to my chemopause.  I also had hot flashes and insomnia, though that's better now.  I had very mild nausea for the first month or two of Tamox.  Onc said it is common -- same principle as morning sickness, actually.  It also seems like my hair is growing incredibly slowly, but at least it's coming in.  I'd say I have about 1 1/2 - 2" and that's since May or so!!

Nov 27, 2007 06:52PM Cynthia1962 wrote:

What an awesome group we have on our T train.  I'm so glad we'll have each other to lean on and learn from.

Harley - sorry to hear about the RLS and insomnia with the higher Effexor dose.  I'm glad you can handle the lower dose.  I don't know what I would do if the Ativan didn't help me sleep at night.  My children are not very sympathetic when I don't want to get out of bed in the morning.  lol  

Layne - loved your ovulating story. Congrats on finishing rads!  How is your skin doing? 

MOTC - how long did the bleeding last?   I really don't want to have a period that lasts forever, not that I have any choice in the matter.  I guess anything is possible with Tamoxifen.

Lisa - I spent my childhood in Youngstown, Ohio.  My dad was born and raised there.  I'm glad your hot flashes come in handy with the weather. It would be nice if we could at least control when we have a hot flash, then we'd never be cold again.  You're running???!!!  Wow, I feel tired just thinking about running.  I guess I should push myself more.  

Basha - your cupcakes sound so good!  I told a friend about them and she said she'd have to put a peanut butter cup on top.  lol  Sorry, probably tmi. 

lisettemac - welcome to our group.  That's awful about the nausea, but I'm glad it eventually went away.  I so did not want to have that particular side effect - it was one of the worst parts of being pregnant for me.  And, I don't eat when I'm nauseous, so not eating for a couple of months would be bad. lol  

Is anyone's white count still low?  Mine was 2.3 a couple of weeks ago and I still have a mouth sore.  I wonder how long before my body starts to recover from chemo/rads.  It's funny, but my rad onc said my low wt count is from chemo, and my med onc says it's from rads.   I say it's from both of them, thank you very much. 

Have a good evening, all!

Cynthia 

Nov 28, 2007 07:08AM my3girls wrote:

Welcome Lynn!  Always room!  I too wonder about arthritic pain with the Tamox.  I have had knee problems for awhile, but they seem to be worse with the tamox.  I spoke to my oc about my knee..she didnt seem to think it was related.  I would have to say my hunger is much less since on this...of course it's not causing me to lose weight! Darn!

Cynthia...funny you mention Youngstown...my mother was born and raised there!  I too visited my Baba (Grandmother) there all the time. In fact, I still go there often, my mother has passed, but all of ther siblings still live in that area.  Small world!  Yes..I am running...I had been walking 3 miles, 3-4 times a week during all this..well..not on my tx weeks!! So now that I feel better..I got back into running.  It feels good!

I am one of 7 children...I have a sister in California and Arizona..my sisters were smart..the left the cold!! haha.  Well...I have nice places to go for vacation!

Harley...I hope you get some help with the rls. and your dosage.

Michelle...I too get allot of muscle pains.  I am not sure that it is the meds...because I seem to have it allot...and did before starting this 5 wks ago.  Hard to say??

Well ladies..enjoy your day...I am at work...so I will be checking back to see how you all are doing!

Are we getting our halls decked for Christmas??

xoxo

Lisa

Nov 28, 2007 08:49AM my3girls wrote:

awb..haha...no kidding on the weight loss.  I will lose my belly fat when I have my surgery (tram flap) this winter.  Bad way to have to lose it.  I don't have much...but more than I ever did!  I started sit ups..Ill see if that helps!

Good luck to all!

Nov 28, 2007 10:10AM Harley44 wrote:

awb,

Thanks for the encouraging info. about Tamoxifen and these other types of cancers...  Even if I know in my head that the risk is very low, I still fear this se SO VERY MUCH! 

Just like with the chemo... I had a tremendous fear of developing leukemia from the chemo txs... 

I will probably get the u/s yearly, since I also have fibroid tumors, and I worry that they will grow, and I may have trouble with bleeding from that...  scary to me! 

So sorry to hear about your hyst. for ovarian cysts!

I am postmenopausal due to a condition called Premature Ovarian Failure, and the drs think it is auto immune related.  So, I really don't want to think about having bleeding again.

Sounds as if you are just about finished with the Tamoxifen!  I am glad that you didn't have too many se's from it.  Will you be taking an AI afterwards?

Best Wishes,

Harley