Bottle o Tamoxifen

Jules (((((((((((HIUGS)))))))))))))))) too many x-rays, etc.

Ruth my 10 year recurrance is 14% with taking tamox.  I thought it should be lower as well as was bummed but DH reminded me that I have a 86% chance of not having a recurrance in 10 years.

Hi Ladies,

Nice to welcome some new faces. Great group of women here, you have become my support group. Thanks! Wish i was high tech enough to contribute photos of yummy food ( or in Sherry's case, yummy Texas cowboys.)



Jules, good to know that you are keeping nerves in check. Smart. Sending you hugs.



Guys, what is biotin? My nails are thin for the first time and my hair is shedding. I have really thick hair so not so noticeable but it is also much more unmanageable, Bride of Frankenstein look. Now that i hobble around in a cast, sweat profusely and have delicious frizz for hair, i am quite the looker.



Sherry, good luck on your banquet. I am having an evening at my house next week that 80 women are coming to and i am a bit hysterical. It all started a few mos ago when i decided to try and start a charity for very needy women w BC to cover non medical expenses during the first few months. Calling it a breast cancer emergency relief fund. There are some incredibly poor women here and i couldnt imgine worrying about rent, utilities on top of everything else during those first few awful months. Have met w the social workers at the breast center who will recommend the women and partnered w a local charity who will help administer. Had brochures and invites printed and sunday eve is the kick off. I sort of came out of the closet for this and thats been a bit hard. I didnt tell many about my situation for a year almost and now theyre a bit shocked. Had very mixed feelings about doing this for that reason as i liked my privacy. Some people have odd reactions. Am

Combining the event w the 50th bday celebration i missed last yr, asking people to give to the charity in lieu of gifts. So I know i will be surrounded by good friends who will be there for me and this good cause, but it is suddenly feeling sooooo overwhelming. Like what the hell was i thinking? Hubby gave me the gift of someone to help w the food which is great and friends are helping. More just the idea of the big public event and being out there. Too late to go back. Sent out an invite entitled, 'Turning lemons into lemonade' and my 14 yo daughter is making us all wear yellow. I better get w the program! Need to paint my cast yellow, too...



Ruth, i hear you re your thoughts on future risk. I think that what they might be saying is that though there could be a recurrence even w early stage, that now we are being monitored so closely that any recurrence would be caught early enough. Could that be what they mean by, you won't die from this? Ive been thinking about the same thing lately. Get mixed messages. Prognosis is good yet risk of recurrence isnt so low. On the other hand, sounds like your stats put you at about the same risk as the general pop for getting BC?



Paula, thanks for your good advice.



Jo you are always so reassuring.



To the new ladies, go for the tami, no question! You can always stop but worth the try. Ive found the SEs to be manageable. Annoying at times but worth it to me.



Hang in,

Love, shari

Juliet or Julie?

I am heading back to Wales this October.  My sis and her husband do the drive Swansea to London every weekend. She told me last week a lorry got stuck under the bridge and there is quite a bit of damage and traffic is a nightmare.  Hope is it cleared by the time you go home.

Florida!  Smart move, I'm in Washington State. How long have you been in the states?  25 years for me.

Night night zzzzzzzzzzzzzzzzzzz

been here in states since 88, flying into cardiff  but go around the tunnel to get home, don;t envy your family having too drive to london weekly!

Paula - I am having the same hot flash / cold sweats... I had two after waking this morning, and before getting out of bed (true, I was postponing getting up but it was only about 15 minutes).  My co-worker cracks up because I will be fine then soooo hot... it feels like some one is blowing hot air out of my scalp.  I get hot flashes like 12 times a day now... hanging on for them to abate - been on the Tami for only 16 days... I had a UMX with NSS so I still am not wearing a bra, so when the cold sweats come on (especially in the air conditioning at work) I have the one headlight...  gotta love the BC BS... On the up side, I finally have no oozing from any of the surgery wounds or drain sites!  That IS a plus... guess it makes sense to start oozing from my sweat pores!

Jules ~ thinking of you.  Please keep us posted.  I too have something in the lung they are watching.  They said it is a small nodule.  I go Monday for a 3 month follow up ct scan and see my oncologist.  UGH !!!

Hang in there !

Welcome to all the new girls ~ may your side effects be to a minimum.

Shari ~ what a wonderful thing you are doinging.  I am sure everything will go smoothly although it sounds like quite an undertaking. 

June ~ good luck with your bra fitting !!!

JO, Swansea and all you great girls ~ HUGS ~

Hi Alicia!.. good luck with your follow up scan too we will bethere right next to you in spirit!!!! hugs

Shari what a wonderful event you are throwing for such a wonderful cause.  I can imagine that is overwhelming but when it is all done you will be so glad you did it. OH and Biotin is a supplent that helps with skin, hair, nails etc. It seems to be working for me.

Paula and Vhshea hang in there with the hot flashes maybe they will die down.  Mine did after a couple of months.

I have been so busy this week, can't wait for the weekend.  It is lunch and I am taking a break.

Dear Jules and Alicia, sending you good thoughts re your scans. I've heard of cases where these things are nothing, but of course everything rattles us now.



Sherry and June, thanks for the words of support re my 'event' this Sunday night. I am pretty nervous but at this point will try to just enjoy. Another challenge will be trying not to cry (blubber) while I'm making my speech. Everything makes me cry now (tamoxifen? Breast cancer?) so how much worse will I be talking about all of it. Anonymity and denial suited me rather well! How do you post a photo here? Maybe I'll try to post some of the evening if I get my act together.



June, congrats on your new bras. I haven't done reconstruction yet. My fall project...I hope.
How has it been?

Swansea, good luck with your tests in September.



So I am trying not to gain weight on tamoxifen. So far so good but exercise was key. Now that I have a busted foot, walking is out. Biking, too. Dr said I could swim, tried tonight but now my
SHOULDER is hurting me. I blame this on tamoxifen. Part of all these joint aches. Anyone else have shoulder problems? ?



Thanks, Shari





Jo, hope you're enjoying your kitchen

JustLaura I am right there with you.  We seem to have similar stories and timing.  I did have one sentinel node and fortunately my Oncotype DX score was only 11 and I was able to avoid the chemo since research seems to say the the hormonal therapy does most of the work for ILC.  Tamoxafin should be the key and I just started my tamoxofin on Sunday.    So far so good-just hope it stays that way.  I have heard that accupuncture can do wonders for some of the side effects so I have someone lined up for that if necessary. 

heftLefty good to know about the dry skin I've already been lathering on the lotion because I was also told that to avoid lymphedema you wnat to make sure your arms stay moust so they don't get dry and crack (espeically in the winter).  Probably need to add to it now to take extra precaution.  i'm wondering if misturing with baby oil is also a good idea???

aww Misszed that all sounds wonderful ~ thank YOU !

Heartnsoul - Try tonic water for the leg cramps.  The quinine in it does something that helps them. Drink 1/2 cup before bed if you're getting them through the night.  It helped me then after about 4-6 months I stopped having the charliehorses in my calfs.  I still have other aches in hips and feet.  I had them prior to BC.

I know we are all big girls here so Im gonna go ahead and ask.  My hubby and I have always had a very active sex life for years.  Then the BC hit.  Everything was fine until of the surgery, chemo, now the Tamo.  I have lost alot of the urge.  Has anyone dealt with this and will this pass?  I hope it does because I am only in my 40's and I still have alot of life left to live and this is one thing I want back.  I hate the feeling of this.  He hasnt been complaining because he understands whats going on, but Im getting tired of it.  Please tell me this is just one of the temp SE please!

I have been on Tamoxifen for 4 days now (started on Monday) and I'm just taking it with the rest of my vitamins in the morning. I read the literature that came with my prescription and it just said 'take with or without food'.  I was wondering if I should be taking it at a different time then my vitamins. Was anyone been instructed on this?

CML - You are right! Our stories are so similar! It is rare that I see someone with an early stage of ILC, or ILC at all since it is so hard to detect. And both not needing chemo is very unusal. I hope your Tamoxifen journey goes well. So far mine is!

JustLaura,

I take vitamins twice a day and I take my tamoxifen with my evening dose of calcium, ginger root, and glucosamine. My oncologist says that tamoxifen doesn't fight with any vitamins or medications and you can take it at any time, with or without food. I know some people have been told differently but I choose to believe the no-stress approach as all of this is stressful enough.