Topic: Bottle 'o Tamoxifen
- Posted on: Nov 26, 2007 03:02 pm, edited Nov 26, 2007 03:03 PM by ashaby
Posts: 274
Dear All, (and Layne are you there?)
Got my Tamox today and will start in a week. Where are my tamoxi pals? It says weight loss for one of the side effects. Now that's a good thing. Basha
Dx 4/4/2007, DCIS, 6cm+, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2-
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conniehar Joined: Mar 2007 Posts: 733 |
Nov 26, 2007 03:24 pm
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. Connie
Dx 3/8/2007, ILC, 6cm+, Stage IIIa, Grade 3, 1/12 nodes, ER+/PR+, HER2- |
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laynel57 Joined: Jul 2007 Posts: 489 |
Nov 26, 2007 03:27 pm
laynel57 wrote:
Hey, Ashaby! I'm here! I'll be right by your side doing the tamoxi-dance! Weight loss?! I thought it was weight gain???!! If it's weight loss, hooray! I'm going to start my Tamox on Saturday, December 1 -- for no other reason than the first of the month is a nice, round number! See you on the tamoxi-train! Layne "Hit it with a sledgehammer until it submits or dies ...."
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laynel57 Joined: Jul 2007 Posts: 489 |
Nov 26, 2007 03:29 pm
laynel57 wrote:
OH -- and the hot flashes one is supposed to get .... Well, I took the Pill for many years (yeah, that's how I got bc, I'm sure) and had hot flashes at night (night sweats). Quite spectacular ones ... my husband would actually whine that I was too hot to touch! WELL .. after I stopped the pill when I was dx'd in July of this year (yep -- threw away the half-finished pack the day I got my dx!), I STOPPED having hot flashes! Go figure! And I am VERY pre-meno even at 50 (can't even see it from here). So I wonder if I'll get hot flashes again? This will be interesting ... glad I have good company! Layne "Hit it with a sledgehammer until it submits or dies ...."
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annm Joined: Nov 2006 Posts: 239 |
Nov 26, 2007 03:41 pm
annm wrote:
I've been on Tamox since April. I haven't seen any weight loss....a bit of weight gain. I'm not sure I can blame the weight gain on Tamox. though. I have been on a very "unrestricted " food plan lately. No hair loss....full head of chemo curls. I have had a few SE like mild vag dryness and leg\feet pain. But nothing that would stop me from taking it.
Dx 9/22/2006, IDC, 4cm, Stage II, Grade 2, 0/15 nodes, ER+, HER2- |
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karol61 Joined: Mar 2007 Posts: 161 |
Nov 26, 2007 04:18 pm, edited Nov 26, 2007 04:19 PM
by karol61
karol61 wrote:
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." Everyone no matter how mean or despicable has a positive side
Dx 3/22/2007, DCIS, 1cm, Stage 0, Grade 2, 0/0 nodes, ER+/PR+ |
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my3girls Joined: Nov 2007 Posts: 3,490 |
Nov 26, 2007 04:23 pm
my3girls wrote:
<table height="100%" width="100%"><tbody><tr height="100%" width="100%"><td height="250" width="100%"> Hi.. I started my Tamox 5 weeks ago. So far..very lucky..no real side effects. I had heard weight gain as well. I have not gained any weight...but I am having a very hard time losing it! I am running, eating healthy and less, but not much has shed. As for the hot flashes, my chemo put me into menapause, so I have been experiencing hot flashes for about 6 or more months now. I haven't really noticed any increase in frequency. I saw my oc today..and I told her, so far so good....nothing to report. Hopefully you will have an uneventful journey on this drug as well. About the hair...no loss here...it is growing and filling in rather well! xoxo Lisa </td></tr><tr><td height="1"></td></tr></tbody></table>Worry is for "shit"! Live, Laugh, Love!
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Harley44 Joined: Jul 2007 Posts: 4,168 |
Nov 26, 2007 05:33 pm
Harley44 wrote:
Hi there,
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. 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? |
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my3girls Joined: Nov 2007 Posts: 3,490 |
Nov 26, 2007 06:30 pm
my3girls wrote:
<table height="100%" width="100%"><tbody><tr height="100%" width="100%"><td height="250" width="100%"> Harley, My oc said the chance of getting ovarian or uterine cancer from being on Tamox is only 1%. Those are very low odds. I personally would not get a hysterectomy just for that reason. Talk it over with your oc and your gyno. Best to you and all of the Tamox ladies! xoxo Lisa </td></tr><tr><td height="1"></td></tr></tbody></table>Worry is for "shit"! Live, Laugh, Love!
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TenderIsOur… Joined: May 2007 Posts: 4,313 |
Nov 26, 2007 06:55 pm, edited Mar 19, 2008 01:19 PM
by TenderIsOurMight
TenderIsOurMight wrote:
Dx 6/2001, IDC, Stage II, SLN+, Grade 2, ER/PR+, HER-
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bomber410 Joined: Apr 2007 Posts: 561 |
Nov 26, 2007 07:09 pm
bomber410 wrote:
Hello All, I am writing to make a reservation for one on the Tamoxifen train. I'd like to travel first class. :-) I'm reading the side effects - weight gain - no Thank you! Hair thinning - I already was gifted with naturally fine, straight, and thin hair - so No Thank You. I'll take some weight loss. I see my onc on Friday so will likely get the script then. A December 1 start sounds good. Debbie You can visit my CaringBridge site at http://www.caringbridge.org/visit/debbiecole
Dx 3/29/2007, IDC, 2cm, Stage II, Grade 2, 1/10 nodes, ER+/PR+, HER2- |
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Member_of_t… Joined: Sep 2004 Posts: 5,520 |
Nov 26, 2007 07:50 pm
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.
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roseg Joined: Sep 2004 Posts: 8,473 |
Nov 26, 2007 08:23 pm
roseg wrote:
I usually say that if you gain weight easily then you need to watch what you eat when you take tamoxifen. It isn't hard at all to be eating more than you think, particulary with holiday goodies all over the place. Rose
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Harley44 Joined: Jul 2007 Posts: 4,168 |
Nov 26, 2007 10:26 pm, edited Nov 26, 2007 10:37 PM
by Harley44
Harley44 wrote:
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 |
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Cynthia1962… Joined: Nov 2006 Posts: 716 |
Nov 27, 2007 12:38 am
Cynthia1962 wrote:
I'm so glad there are quite a few of us who recently started or will be starting Tamoxifen. It'll be helpful to compare notes. I've been on it two weeks and I believe the hot flashes have begun. I had them with the chemo pause, but they were almost completely gone before I started the Tamoxifen and now I'm having a few a day. So far, they aren't bad but I read that they usually peak at 6 weeks. I'm experiencing restless leg syndrome again, and I don't know if it's from the Tamoxifen or the Toprol I'm on to slow my heart down. I wonder if I'm going to be on Ativan for the rest of my life. Cynthia Dx 1/11/2007, IDC, 2cm, Stage IIIa, Grade 2, 4/18 nodes, ER+/PR+, HER2- |
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Cynthia1962… Joined: Nov 2006 Posts: 716 |
Nov 27, 2007 01:38 am
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 Dx 1/11/2007, IDC, 2cm, Stage IIIa, Grade 2, 4/18 nodes, ER+/PR+, HER2- |
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Member_of_t… Joined: Sep 2004 Posts: 5,520 |
Nov 27, 2007 09:24 am
Member_of_the_Club wrote:
I had heavy and prolonged bleeding after my period came back, a few months after starting tamox, so i had an endometrial biopsy and transvaginal ultrasound then. All was well. Thursday I am having another transvaginal ultrasound because it has been two years. I don't know that you need a baseline but if you have any issues at all, you should have the tests and definitely a periodic ultrasound. |
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my3girls Joined: Nov 2007 Posts: 3,490 |
Nov 27, 2007 09:31 am
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 Worry is for "shit"! Live, Laugh, Love!
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laynel57 Joined: Jul 2007 Posts: 489 |
Nov 27, 2007 09:42 am
laynel57 wrote:
Welcome, tamo-friends! Debbie, we ALWAYS travel first class! Cynthia, I'm sure glad you're going to hang out with us ... we'll keep an eye on you! Thanks, Tender, for checking in on us ... we'll be hungry for more information! And MOTC, thanks for chiming in, too ... I believe we live in the same part of the country! Harley, my med onc said the same thing that Lisa's did -- the chance of getting uterine or endometrial cancer is very small. My med onc wasn't willing to even entertain the idea of an ooph for me so that I could go directly to an AI, so a hysterectomy would be out, too. I'm not too worried about it because I'll be followed very closely. I had a pelvic ultrasound in August, mainly because my gyn is very thorough (and I have a terrible obsession with ovarian cancer, for no reason at all). It will serve as a good baseline, too. Amusing moment ... the tech said cheerfully, "Oh, there's your left ovary ... OH! It looks like you just ovulated!" I said, "Oh, greeeaaaat!" in a sarcastic voice. He said, "Why?" And I said, "I'm FIFTY! There aren't too many fifty-year-old women who want to hear a cheery 'oh, you just ovulated!'" Everyone laughed. We'll get through this together, gentlewomen, just like we got through surgery and rads and chemo and the other stuff. We have each other! Excited hugs (gentle!) because I'm one tx away from done with rads! Layne "Hit it with a sledgehammer until it submits or dies ...."
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my3girls Joined: Nov 2007 Posts: 3,490 |
Nov 27, 2007 09:52 am
my3girls wrote:
Haha...thanks for sharing the laughter laynel!! I know that is not something I would want to hear either! Thanks for the reminder too...I need to make an apt with the gyno for January!! Funny how you said..you have a terrible obsession with ovarian cancer..for no reason at all...that has been me with bc..for no reason. And because of that, I had never had a mamm or did self exams..because of my fear...until I HAD to, last Feb!! Funny how our minds work. Congrats to all that are finishing their tx's..and to all who are completed!! Moving on........such a great thing to say!! xoxo Lisa Worry is for "shit"! Live, Laugh, Love!
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ashaby Joined: Jun 2007 Posts: 274 |
Nov 27, 2007 10:32 am
ashaby wrote:
Hi Everybody, current and future Tamoxibuddies,
Dx 4/4/2007, DCIS, 6cm+, Stage 0, Grade 1, 0/0 nodes, ER+/PR-, HER2- |
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my3girls Joined: Nov 2007 Posts: 3,490 |
Nov 27, 2007 10:51 am
my3girls wrote:
Ashaby...what a great idea!! So far no weight loss for me maybe the weight loss will come later?? Hope so!! Worry is for "shit"! Live, Laugh, Love!
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laynel57 Joined: Jul 2007 Posts: 489 |
Nov 27, 2007 12:21 pm
laynel57 wrote:
Basha, LOL! ARRRRRRRRRHHHHH!! (Pirate noise!) I LIKE that characterization ... ferocious warrior! In fact, my husband and a couple people at work all said independently of each other that they believe the cancer is gone because it wouldn't DARE to come back! LOL! I'm not so sure, but it's funny nonetheless. I'm also ROFLMAO at your chocolate cupcakes with pink icing and raspberry nipples -- I LOVE that idea! You should ABSOLUTELY wait until 12/2 to start Tamox ... let 12/1 be No More Cancer Day -- celebrate the good boobs! I also want some of YOUR tamoxifen -- the kind that comes with the flyer that says "weight loss." 3girls, I'm envious that you can run -- I'm an asthmatic and can't run for a bus, but I do walk and will go back to the gym as soon as rads are over. I'm going to follow your lead and really, really cut back on intake, too. I lost 8 lbs last year, but gained it all back when I got pneumonia and couldn't go to the gym 3 girls, where in Ohio? I was born & raised in Dayton! Cheers, tamoxifriends! Layne "Hit it with a sledgehammer until it submits or dies ...."
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my3girls Joined: Nov 2007 Posts: 3,490 |
Nov 27, 2007 12:35 pm
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 Worry is for "shit"! Live, Laugh, Love!
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Harley44 Joined: Jul 2007 Posts: 4,168 |
Nov 27, 2007 03:39 pm
Harley44 wrote:
Cynthia, I, too, am having additional issues with the RLS problem... Strangely, it is only on days when I also take my new higher dose of Effexor XR... 150 mg... I was taking 75, but since I anticipated having terrible hot flashes and night sweats, I got my dose increased. I just started the new higher dose, but I gotta tell ya, it ain't working too well... On days when I take it, I have terrible insomnia and restless leg syndrome at night and can't sleep at all! Now, I am only taking it every other day, so I can still be on the lower dose until I know for sure if the hot flashes and night sweats are back and if so, if I need the extra help with a higher dose of Effexor. I am seriously thinking of just staying on the 75 dose, since I had less trouble with it. Harley |
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lisettemac Joined: Feb 2007 Posts: 209 |
Nov 27, 2007 03:56 pm
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!! |
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michmom Joined: Jan 2007 Posts: 132 |
Nov 27, 2007 08:34 pm
michmom wrote:
Save me a seat on this tamoxifen train !! Glad to be sharing with all of you. I've been on it for 8 months. I take it at nite and haven't been too bothered by hot flashes. I too read the pamphlet that said weight loss (I think it's a misprint LOL) Can side effects start at any time??because recently I know I've gained some weight without eating differently and it's frustrating!! My other question is about muscle aches because also only recently have I been getting some leg and back pains. I always thought if you got side effects they happened right away now I think I attribute everything to the meds. How do you know when it's a true side effeect? Sometimes it's a good excuse to my family for bad moods and crankiness too. Must be the meds !! Michele |
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Cynthia1962… Joined: Nov 2006 Posts: 716 |
Nov 27, 2007 08:52 pm
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 Dx 1/11/2007, IDC, 2cm, Stage IIIa, Grade 2, 4/18 nodes, ER+/PR+, HER2- |
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JapanLynn Joined: Oct 2007 Posts: 472 |
Nov 28, 2007 04:59 am
JapanLynn wrote:
Hi, ladies-- Is there room in the club car for me? I took my first dose of T on Nov. 3. So far, I've had more "power surges" than true hot flashes...and almost no night sweats (knock wood). My arthritic hip has been bothering me the last couple of days after a long period of little to no pain...could it be an SE? It's tempting to blame every ache, pain, mood swing, headache, hunger pang, hangnail, etc., etc. on tamoxifen, but... I have a hankering for a cupcake with a raspberry nipple on top...another SE?! Lynn Dx 7/30/2007, IDC, 1cm, Stage Ia, Grade 3, 0/2 nodes, ER+/PR+, HER2- |
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my3girls Joined: Nov 2007 Posts: 3,490 |
Nov 28, 2007 09:08 am
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 Worry is for "shit"! Live, Laugh, Love!
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awb Joined: Aug 2005 Posts: 2,737 |
Nov 28, 2007 10:41 am
awb wrote:
Harley---the risk of endometrial cancer from tamoxifen is very low--reportedly less than 1%-- and it does NOT cause ovarian cancer. I've been taking tamox for over 4 years--initially with very mild hot flashes. I did have a total hysterectomy 2.5 years ago (not by choice--had large ovarian cysts which ruputred), so now I have increased SEs but they are now due to the loss of my ovaries rather than the tamox itself. But from personal experience, I would recommend a yearly transvaginal US to monitor both the uterine lining and the ovaries for any changes. I haven't gained any significant weight, but have noticed increased "belly fat" and can't seem to lose an ounce despite diet and exercise. Weight loss on tamox?--what's that???? |
. I have actually lost 3 lbs...but I started running again...and really, really cutting back on my intake!
I have had a bad case of, "Well, I have cancer" eating ... you know what I mean -- I'll just eat that whole box of chocolate because I have cancer and I deserve it. I MUST get a grip!