Bottle 'o Tamoxifen

Erika09

Hi ladies, I went today for my pre-op ooph on March 8th. My doctor wants to do a full hyst/ooph, this way only one surgery and no worries about tamoxifen later. So, now I'm scheduled for a full clean up! The reason for doing ooph is because of a 2cm solid mass in the right ovary.

Do you know of any reason why I should not remove the uterus?  I was too focused on the ovaries and never thought about my uterus. He wants to remove cervical area also. I guess I'm going to be left with only my vagina now!:-)

I hope the cervical removal doesn't cause more sexual problems. As is I'm already putting that thought aside these days! I appreciate your input, Erika

Sparrow

Hey all, just checking in.  

Thanks, Kelly!  Boris is 2 1/2 years old now and weighs 75 lbs.  I miss my little puppy sometimes!  Well... I don't miss the chewed shoes and lack of house training so much. Everything is a trade-off, isn't it?  

We had a heater repair guy look at our heat pump Monday.  He replaced the heater motor...  and then the circuit board exploded.  He had to order a new circuit board.  >:(  They will install it Wed or Thurs.  Until then we have only 1 heated room.  Of course, the circuit board doubled the price of the repair.  Whatever...  I just want to be warm again!  

To add insult to injury, it snowed all day today.  Thank goodness it didn't stick on the roads.   

Pam, I'm so sorry you have to stick with Tamox.    I wish there was a better alternative!  

Erika, no advice but the best of luck to you!

Harley, almost 3 years cancer free, that is so great to hear!!!    

Have a good night, everyone! 

Hannahbearsmom

Erika09: Obviously, it's a very personal decision to make but I will say that my docs also recommended the ooph/hysterectomy(including cervix). After much consideration, I was comfortable with that because I wanted to cut out as much estrogen as possible. I also wanted to avoid some of the issues that can come with taking tamoxifen(bleeding,thickening,etc). I know that your situation is different because you have a mass but I want to reassure you that after having my surgery in Dec 09, I haven't really noticed a big change in how I feel--no increase in hot flashes. I did have robot assisted laparoscopic surgery rather that open or vaginal though. I did have to be out of work for 6 weeks because I have a strenuous job. I have no regrets and am very happy to not have to worry about having my period or cramping anymore as a bonus. I will be having my exchange surgery on March 8 and I will be thinking about you and wishing you well on that day.

TCK

Erika09

Hi TCK - I was thinking of contacting you again and was going to send you a PM. Sorry for being beating on the same story again! I guess at this point I'm in need of reassurance! The biggest step for me was the decision to remove both ovaries because I think it plays a bigger role in the body. Since I'll be in surgical menopause anyway, removing everything else seems like the right thing to do.

I also did some reading on Mayo Clinic website about total hyst and they recommend it for women in my situation, particularly because I'm already 49, never had children, bc history, and will not be using my reproductive organs at this point.

I am so glad it worked out so well for you and you have not had much side effects. And you can now concentrate entirely on your EXCHANGE! How exciting!!! I completely forgot about my TE's since my focus changed to my pelvis! I hope to get over this soon and that everything turns out OK so I can start dreaming again about new soft/squishy girls.

You'll be in my prayers and thoughts on the 8th. What time is your surgery? Mine will be at 7:30am

Sparrow

Erika & TCK, good luck with the surgeries!  

I haven't had to think about any of that yet but that may change when I see my new gynecologist Friday.  

On a happier note-  WE FINALLY HAVE HEAT!!!     It's going to take several hours for the house to warm up because we have a heat pump but I'll be so excited to take a shower in a warm bathroom.  It's the little things in life that matter.  

kcl65

Hi Everyone!,

 Just doing a quick "Susie drive-by"! HANNAHBEARSMOM~ It is so good to see you again!!! ERIKA~ I will be praying for you as you make this decision! SPARROW~ YAY!!!!!!! Heat!!!!!! I am really happy for you, nothing worse than constantly feeling cold!

Hugs to all,

Kelly

bcamnb

Hello All,

All seems on the up and up with major decisions being made, ice off roofs, heat in bathrooms. Now all we need is for some of the Barbie doll joints to improve and leaky drains to quit draining...

Thought you might need an "aw" moment - here he is with new bunny - 7 weeks old.

xo

C

(and they will be HERE for a visit in 3 1/2 weeks )

kcl65

OMGosh Caroline... he is just too adorable! I bet you can't wait to get your hands on him for snuggle time!!

Hugs Kelly

Hannahbearsmom

bcamnb:  Too cute!! I know that you can't wait for their visit!!

kcl65:  I've been reading lately but not posting as much--gotta keep up with my tamoxifriends.

Sparrow:  I don't know how you made it without heat!! I'm cold here in NC-- in my house that has heat!!!! And lately every time I take a shower I have to drag myself out because it is so warm and feels so good. Surely spring is coming soon??

TCK

Erika09

parrow & Kelly - Thank you for your good wishes and prayers!

peg119

Just wanted to drop in and say a quick hi.  Spent the weekend in Denver with my daughter.  Went to a country bar and line danced, Red Rock for sight seeing and got to see the Red Wings beat the Avalanche. 

I don't thnk they ever did a oncotype test on me so have no idea what my score would be.  Maybe because it was DCIS and very small.

Wishing the best of luck to those with surgery and surgical decisions to be made.

Anonymous

Erica---I  had a TAH/BSO (everything removed), but not really by choice--I had a large ovarian mass  (8 cm) and they were concerned about ovarian cancer. I had no problem letting the uterus go--I was all done with having kids so it no longer served a function--but I considered having him try to save the other ovary, so I wouldn't go thru instant menopause. However, I decided against it--I didn't want to chance it happening again (25% chance of ovarian cysts happening on the other side)--it was actually the right decision; it turns out I had cysts already forming on the other ovary and in the fallopian tubes as well and uterine fibroids too. Having immediate surgical menopause along with recovery from major abdominal surgery was rough though, especially the hot flashes and night sweats. It's been almost 5 years and I still have hot flashes, but they are much less intense. The thing that bothers me most is the stiffness/achiness that comes from the lack of estrogen, none of my docs have a good solution for that. (no improvement with glucosamine; now I'm trying fish oil).

Anne

CatbirdC

Hi Everyone,

Kelly~~   I'm here ......    SusieQ's  hiding.....  )    time for a drive by

Nancy~~  we'd be the same way here if a pipe froze under ground with all this ice.

Pam~~ my heart goes out to you. 

Sparrow~~ we had that with our heat pump where we replaced the motor and then the circuit board went ???  Don't understand those matters except for the $$$.   LOL

Caroline ~~  your baby doll just gets cuter and cuter.

My hot flashes are back for a visit.  Hope they leave very very very soon !!!!!!!!!  Some of you may remember my saying how my SE's seem to come and go come and go.  Does anyone else have that? 

Sending positive caring thoughts to all my buddies here.

Bonnie

MBCR

Sparrow: how's your hip? If walking is too much try biking or swimming or water walking. I did water walking for a while. It was great- no stress on the joints. I went to a weekly class at my local "Y".

Susie09

I am hereeeeeeeeeeeee! Hi tamoxibeauties!



Sorry I haven't been on much and I am sooooooooo lost in the posts that I won't even try to read them all. Just let me say that I hope everyone is doing well and that tamox is behaving with you!



I have had company and you know how that is. Just been busy and haven't had time to come on to post.



Just know that I am thinking of all of you and keeping you in my prayers!



♥ Susie

Chevyboy

Hello again all you beautiful Women!  Can you please help me with a question?  I am waiting for a call-back from my Onco Doc....I am not having any side-effects from taking Tamoxifen for 2 months....Does this mean I am not metabolizing it well?  I am waiting to hear if she will order the CYP2D test, to confirm that....But have any of you women HAD the test, found out you WERE metabolizing it well, & didn't have any side effects?    I still have the 3 bottles of Femara that I have been afraid to try....The Radiologist thinks I should have that test, & then I could KNOW if I should stay on Tamoxifen. 

I have read, & talked to women who have taken Femara or Arimidex, & their side-effects are somewhat debilitating!   One of my friends had to stop after 3 months on Arimidex, because she can hardly move!  Her hands, & feet are in so much pain...Doctor told her to take a month off to see if that helps.  

So if you can let me know what you gals think!  The ONLY thing I notice, is I seem to "dream" all the time...& my hips hurt when I'm laying in bed sometimes...But that cold have something to do with my AGE, Ha! 

Kelly, I'm going to answer your PM now....Love you girls!  xoxoxoxoxoxo

kimt

I have a question for you ladies about when you take your Tamoxifen - morning or night - and whether you have found it makes any difference.  I've been taking mine at night, sometime between after dinner and when I go to sleep.  But my night sweats seem to be getting worse, so I was thinking of switching it to the morning.  Anyone find it makes any difference?

Sparrow

Bcambnb-  what a sweet little angel!!!  

Bonnie, how funny that your circuit board blew up too...  well, not funny exactly.  These things are expensive!  When the heater guy left yesterday it was blowing cold air.  He said it would warm up in a few hours.  It's the next morning and it's still blowing cold air- so I guess the joke is on me.    They are coming back today and I hope they really fix it this time!  Every time I see that guy it's another $300 bucks...  

MBCR, thanks for asking.  My hips are all better now.  I just woke up yesterday and they were fine.  It wouldn't hurt to  start some kind of exercise plan, though.  Ugh, I hate exercise!  

Chevyboy, this post about Tamoxifen is on YSC.  It was written by Erica35 who is a doctor (but not an oncologist).  She says "Tamoxifen side effects are NOT clearly linked to the type of metabolizer you are or to whether your enzyme is being inhibited. You can't guess whether it's working by whether you have symptoms."

Here's a link to the full post which includes a list of drugs that interfere with Tamoxifen:  http://www.youngsurvival.org/blocks/_Forum/index.php?showtopic=24423  Ugh, I can't figure out how to make a link!  Cutting & pasting should work...   

ReginaR

Kimt, I take mine at night too. around 9pm , I have been on it for 4 weeks. I have notice more hot nights, kick off sheet  & wake up sweating in this last week. I have head ache to around 11am  for over a week. I thougth about either spiting half in am & half at night.

 I wonder if any one who take T in Morning are having these symptoms. 

Hope you all have a Beautiful weekend! Hugs T sisters!

Gina

Anonymous

I took tamox for 5 years and my SEs were no different if I took my meds am or pm.

anne

nwood450

Hi everyone

Had my long appt. in Boston yesterday.  WHEW!  Sigh of relief and happy dancing!!!!!  Mammo was clear!!!  WEEEEEEEEEEEEEEEEEEEEEEEE!  I had such a good night's sleep last night! 

Caroline - What an adorable pic of the baby!

Sparrow - so glad you have heat ... I had goosebumps for you!

Harley - three years cancer-free!  So great!  This seems like a silly question but when do you mark a milestone?  Is it a year from diagnosis, a year from start of treatment / surgery or a year after it's all done?

Erika and Pam - thoughts are with you ... Pam sorry you have had such a difficult time with tamox SE's.

Much love to all of my friends!

Nancy

nwood450

Kimt

I take my T in the morning.  Doesn't seem to make a difference with me. My hot flashes seem to subside for a while and then I'll have a few days of torture!  This morning I had a whopper and went outside in the parking lot at school for relief!  It was snowing lightly ... boy did that feel good.

 Nancy

Chevyboy

Thanks Sparrow!!!!!!! Yes, good job on posting the link!  Answered a lot of questions for me! 
So if my Oncologist doesn't call back, which is what I expect, I'm just sticking to the T. Pill!  I'm going to pick up the renewal pretty quick here!   I don't WANT the side-effects, but at my age, anything that happens is usually the norm, Ha!  Thanks! xoxoxoxo

MTG

Maybe it's something in the air. I've also noticed that my hot flashes/ night sweats have gotten notably worse lately - about every 2 hours at night so it's definitely interfering with sleep.  I've been on T for slightly more than 3 months. I'm wondering if it has something to do with my diet ? (Maybe that'll be my next research project...and you guys know that I LOVE research projects.)

Harley44

Nancy

Thanks...  I think there is some controversy over where to begin your count for such milestones.  I counted from the day my surgeon took IT out...  3/15/07.  My onc counts from the day I finished my tx, but since I think it should be from when they took the cancer out, I count from my bx...  when I got the pathology back from my bilateral mast., there was No Evidence of Disease in the tissue... WHOHOO!    So, my anniversary date is 3/15.

Hugs to all

Harley

CatbirdC

I'm with you Harley.

I count from the day I got it out.

Bonnie

Hood1980

When I complain about my HOT flashes to my onc, she says to stop sugar.  That sugar intake increases hot flashes.  I have a real sugar addiction so I have not ever been able to give sugar up, but was wondering if any of you have & if the hot flases diminished.  I would be more willing to go through the 12 Step process to give up my addiction if I knew on the other side I would truly benefit!    Anyone out there with any expereinces with this???

Harley44

Bonnie,

I guess I sort of understand why my onc counts from the day my tx ended... but I like my system better!!  I have so many dates... when I found the lump, when I had my mammogram, when my surgeon told me it was cancer... 

Hood1980

I have noticed that I get more hot flashes when I drink more Coke... so maybe it's true... 

Everyone have a great weekend!!

Harley

echosalvaje

My hot flashes have increased too. They have also changed a little. Aside from the instant heat and sweating, now I feel these little tiny pin pricks here and there randomly on my body. It's not all the time but definitely noticeable.

I am working at taking sugar out of my diet. I've stopped drinking mixed drinks that use soda. I am only having one small glass of wine in the evenings instead of sharing a bottle with DH. And I've stopped using sugar in my coffee, and I don't sweeten things like oatmeal anymore. The big thing for me has been to take dairy out of my diet. There is a lot of sugar in milk, which I love, but dairy is bad for cancer survivors too.

The thing about the hot flashes though is puzzling. Mine started back in June when I was unceremoniously tossed into chemopause. When I started Tamox in November, it didn't seem to change anything. Maybe it really does take this long to start having SE's. Sometimes my hot flashes come one after the other like a chain of small explosions. I think I'll start writing down the time and frequency of them just to see if there's a pattern.

don23

While I don't post a lot I come to this site quite frequently and do a lot of reading. I have a question for all you wonderful ladies. Has anyone had to have a biopsy of the uterine lining because of the tamoxifen? I have been on tamoxifen since July and have had no real side effects to speak of. I went to my gyne for a consultation on a hyster/ooph and she said I would need to get an ultrasound to determine what type of surgery she could do (laparscopic or abdominal). She called me and told me that she wants to do a biopsy of the uterine lining because it looks to be thickened and said she doesn't want any surprises down the road. Has anyone had to have this done and how did it go?