Bottle o Tamoxifen
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Wow Blackjack , four! I hope everything is ok with you. Thank you so much for explaining that for me. I had a endometrial ablation(msp) in Feb. and at that time my gyn said everything looked good. So I am hoping he can use that as a sort of baseline as to how things were a year ago.
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Honeygirl, The trans vaginal ultrasounds are used as a baseline. As for me I was having bleeding problems in Dec / Jan this year, so I had surgery for D&C and had my RT. ovary removed for a lg cyst. It came back neg for ov ca. But 6 weeks post surgery I was diagnosed with bc. If only I had know before I would have had everything taking out. So now I have only one ovary and they don't want to take it out. go figure...I am doing ok, have to decide if I want meds which is the biggest problem I have right now. I am so greatful to have found this board. These women are so knowledgable and they are all supportive of each other. Hope you have a wonderful holiday.
Blackjack
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Blackjack , thank you! Holiday blessings to you. You have really been through it. Thanks for sharing. I know how you feel about "if you knew".
My gyn said the next step for my problem(excessive bleeding) would have been a hysterectomy. I wish I would have had it. But I didn't find out until a day after my ablation surgery that I had bc. Isn't it weird , they don't want to take out what is supplying our estrogen!!?! I asked my onc if I could get my ovaries out , and go on a AI , and he said" if its not broke , why take it out"! I thought , well , it may cause my cancer to come back! I think it has everything to do with the insurance com. Who knows... Good luck on your decision.xxxx
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Honeygirl.. You are right about the insurance companies. My onc told me it was ok to do but the gyn is not to sure . I know if I push hard on this he will do it for me. I told my doc that I want to make sure that my estrogen level is low and that I am in menopause before I could start the AI. I won't be clear until Aug next year.
I feel that if I don't do anything now ..I never will do the drugs.
I know everyone is different.. but this boards helps.
Hope you are doing well. I will keep you posted on my decision. thanks for listening. Hugs to you, Blackjack
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Blackjack , that is so funny. My gyn said its ok to take out , but my onc said no! My onc said that my fat produces estrogen and a gland in my brain , so it would not be foolproof. Everybody seems to have an answer , except the one I need!
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I'd like to join the train, too! I've been on Tamoxifen since May '07 and haven't noticed any major side effects. I have hot flashes but had them while doing chemo. I'm taking Effexor for anxiety and depression which does help with the hot flashes. The only thing I have noticed but forgot to talk to my onc is that my fingertips on both hands get numb during the night while sleeping. I thought it was Taxol but have talked with another bc sister who didn't do chemo and she has had the same side effect. Anybody else?
Cathy
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Welcome Cathy. I have carpel tunnel that feels like this , but I've had it for years. I haven't had any "new" numbing but I have read others posts that have experienced it.
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Hi Girls, If you have had lymps removed alot of the numbness you are feeling is from the nerves that have been moved around or cut. Some nerves can regenerate themselves over time others can not.
Excerize can help with the pain and numbness also taking advil can help too. I too had numbness in my arm and hand but mine is much better these days. I am wt lifting and it seems to have helped me.
Hope all is well and enjoying the snow fall. Balckjack
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Hi girls! Blackjack...question...you say that you are weight lifting. How much and do you use the arm that you had nodes removed from? I guess, I am assuming you had noded removed. I have started running again, and some arm weights, but I am a little leary about lifting with that arm. I just finished shoveling my driveway, and I was so afraid of bringing on the lymphodema!! That scares the heck out of me.
Cathy, about the numbness in your fingers, I have that sometime as well. I read on a chemo website, where the side effects, including this one, can linger for quite some time, even after your tx's are over. I finished my last taxotere at the end of August.
Take care everyone!!
xoxo
Lisa
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My3girls, I have been working with a personal trainer since June when I started radation. She did massage therapy and I started lifting 5# wts. I have increased now to 15#. I have been doing this very slowly. I have not developed lympodema. I had 6 lymps removed. The only problem I had was numbness to my fingers but that was from the nerves being irratated from surgery. I guess that I am doing ok. Hope this helps . Take care Blackjack
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Hi Everyone,
I start my first Tamoxifen pill tomorrow am and I am worried about the scary side effects. Anyone have any? I already am having hot flashes since chemo and I am 50 so I don't anticipate another period. Do the AI;s have less serious side effects? My last chemo was Nov 15 so my hair is not back yet, just some very white and fine stubble. I am afraid the Tamox will keep it from growing back thick like it was. Anyone have any advice on that?
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Hi ladies,
I started tamoxifen sept 10 it's been 3 months now and the side effect are not that much I'm having hot flash during the night and some during the day but it's not that bad.I had 6 chemo 3 FEC and 3 Taxol and for me Taxol was the hardest,for my muscles and joints,I still have some pain in my feet and hips in the morning when I wake up.
My hair is growing but not as thick as I would like but they are growing. My arm I have some stiffness and the football is still under my arm . I'm going to see my doctor to go see a physio maybe it will do good.
My last chemo was Aug 14 and I feel good, started to work Dec 3 and that's a good therapy.
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Dx 05/03/07,IDC,3.2cm,19nodes-,stage1,grade2,ER/PR+,Her2-
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So far my s/e's are MONSTER hot flashes (which means I'm metabolizing the Tamoxifen, I guess, so goodie!) and weight gain around the midsection. I have a gawdawful beer belly these days and I don't even drink beer!
It's diet and exercise time, I guess.My hair is coming back in - all gray. 100% gray. Eek! And it's a bit thinner than it was but not so you'd notice; I was lucky enough to have super-thick hair to begin with.
So far the s/e's are manageable; annoying, yes, but nothing that I can't live with. But I've only been on tamox a month so we'll see.
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Greetings, Tamoxifen sisters. I'll have put in a year in January. While my weight has stabilized, it's been tough to drop the remaining ten or so pounds I put on during chemo/rads. I'm beginning to think it's not worth the worry. I'm at the gym regularly, and make good food choices. Perhaps I'll never be back to my "ideal" weight, but my energy levels are good and I feel great. The hot flashes are a continuing problem, but I've figured out my triggers: a room with no air movement (don't make me close my office door, ever!), the occasional pint of Guinness or glass of red wine (but I'll occasionally have one anyway); and stress brings 'em on. I'm at the point of having to decide whether to switch to an AI but will probably put off that decision for another year to see what the newest research says. I had lunch yesterday with two other women from these boards in Sacramento. It was great to talk about how we now go days without thinking about cancer and treatment and decision-making.
Life is GOOD!
Trish
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Layne
Thanks for the success story! 70 plus years... WOW!
Keep those success/bc survivor stories coming!
Harley0 -
Oh Layne , thank you for sharing these stories with us. You made my day! I was wondering about Basha too. Basha , hope alls well.xx
Trish , I was amazed to find certain things trigger my hfs. All that you listed , plus emotional upsets. Like at work , as soon as my boss comes in , bam , hotflash. She is somewhat of the army sargent type! She thinks nothing can run right unless she is yelling commands at you. And I noticed the day she wasn't there , I only had two , compared to hourly when she is there!lol I can't stand not having "air flow" too. And I noticed temperature changes. Coming in to a warm house after being outside or vise versa. Other than the hot flashes , glad to hear your doing so well
.Hi Karen 1. I have been taking tamox. since Sept. My last chemo tx was Aug.1st. My hair is growing back just like it was before. I don't feel the tamox is hampering its growth so far.
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Hey all,
I found a new way to bring on a hot flash - shopping at the mall at Christmas time!! Walking briskly with packages being carried only with the "good arm" going from one side of the mall to the other - MAJOR HOT FLASH!! Must admit though, I love to shop at Christmas time so it was worth it.
Take care
Trish
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Hi Girls! I hope you have room for one more on the Tamoxi-Train!! I started back in February...then took a few months hiatus while on chemo, then started again in July. SE's were bearable...mostly hot flashes at night...
Trish- your comment made me laugh...I was out shopping last night as well and suddenly got very "hot"! :O LOL
You know what my biggest problem is??? REMEMBERING to take the DANGED pill... I looked at my little pill case (I had to buy one with the days of the week just so I knew if I took the pill or not) and Monday's pill was there! ARGH! I shouldn't have a problem...I managed to take birth control pills for years... Guess I was more paranoid about getting pregnant!!
Anyhow- look forward to getting to know you gals...
Virginia
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Virginia,
Welcome! There is always room for one more!I guess I remember to take the pills because I also take thyroid hormone every day.
Good luck!
Harley
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Hi ladies!! Welcome Virginia. I put my bottle of Tamox, right on the counter by my kitchen sink...so I see it everytime I am there..and I remember to take it. Maybe that would help you.
Layne..thanks for that wonderful uplifting survival story!! Boy do we need to hear those!
I hear you Trish about the weight and hard to lose it, especially in the mid section. I am running, eating less..for some reason..the tamox has lessened my appetite..but the weight is coming off very very slowly! I just want to lose about 10 before my surgery on Feb. 4th!
Blackjack..thanks for the info on weight lifting. I am worried...I shoveled snow..2 days..I know..I know..I should not have..anyhow, in the shower, I noticed that around my mastectomy it was somewhat swollen. I pray I did not bring lymphodema on!!
About the hair, mine has come in about the same..pretty thick...but now it is starting to curl up! It''s about 2 inches long so far...but it's all mine!!
Take care!
xoxo
Lisa
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Virginia,
I've always taken my birth control pills at night (so I wouldn't get nauseous {sp}). So now I do the same with my tamoxifen. I just leave the bottle on my bathroom counter where I can see it - it's a three month supply so it's a fairly good sized bottle, can't miss it. I then take it after I brush my teeth for bed. Hope that helps!
Take Care
Trish
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Thanks for the welcome Ladies! Yes, I need to just get my brain more focused... I swear I still have chemo brain (finished my treatment on 6/21). Either that or just early senility!!
Today I put the pill box on the vanity...instead of the drawer...
Maybe one day it will be an automatic habit!!
ARGH!
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Hi girls - crazy week so I haven't been checking in and haven't had a chance to read through all the posts I missed.
Harley, you asked how long I have been on Tamox. - just one month. I was on a longer chemo regimen than most - 6 months.
Someone mentioned an upset stomach. Every evening when I take my little white pill, I get an upset stomach about 15 minutes later. It lasts for about 10 - 15 minutes and then all is fine. It's pretty painful too. It's weird as you don't think it could do anything in 15 minutes, but it's like clockwork.
So, for those of you who have been taking Tamoxifen for awhile - do the hot flashes EVER go away? I know if you are going through menopause normally, they eventually go away so I'm just wondering if these will or will I have them for the next 5 years ( or 4 years, 11 months)! It's soooo annoying!
Have a great day ladies!
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Connie,
I have also been taking Tamoxifen for ONE month, exactly. I started on 11/18.
I will maybe only be taking it for 2 or 2 1/2 years, and then switching to an AI. I am concerned about my bones, or I would have been put on an AI from the beginning.Yes, isn't this such fun??
Hugs
Harley
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I started on the 15th, Harley. Yes, I may only be on for a few years too. My onc said after a couple of years if we are sure I am in menopause, we can switch to an AI.
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Ditto...If I am in menopause...I will switch too. But for now..5 yrs at least on tamox.
Speaking of menopause..has anyone seen Menopause the play? Oh my if not...I highly recommend it!! Funny, funny stuff! I laughed so hard..my face hurt all night!
xoxo
Lisa
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Ditto for me, re Tamox and AI. This seems to be the gold standard now for women who stay in menopause (2 or 3 years of Tamox followed by Femara or Arimidex).
I really really hope the hot flashes go away or at least simmer down after a while! Boy am I getting some monsters - it's like sitting in a furnace!
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Hi Ladies, Tomorrow is my Happy dance year with NED!
and also my birthday! It has been 7 years, and next to the good Lord, I Thank Tamoxifen!
Good luck and pm me if you should ever need me!
Problems are very small, considering the Reward!!
Gods Speed
Puppy
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I started the tamox for "real" back in July... I would say that the hot flashes (more like little waves heat) lasted for a month or two. I don't really get them any more. I know that some people think it's good to have SE's...means the meds are working. I don't really have any SE's and my onc said I was really lucky. I hope it's working!! :O
(I am pre-menopausal...went into chemo pause from May until October...but now am as regular as could be just like pre-chemo...I was kinda hoping I would go into menopause, but my onc is glad I didn't for bone health and a multitude of other things she rattled off).
Have a good one ladies...I'm glad to have joined your discussion!!
Virginia
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You people are all so brave. I feel like a whimp but tamox makes me feel miserable.
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