Bringing in 2014 with Tamoxifen!

rettemich

Oops sorry did a double post. 

I was thinking about it today and was wondering if anyone knows what their estrogen levels were before, or after Tamox or any other nasty? They say it will reduce it by blah blah but I personally would like to see how much. Just wondering.

RedReading

I was a 76%

Louanne

Rette, my oncotype was 99.9 for estrogen, just started Tamoxifen about 3 weeks ago.

RedReading, or anyone else, have you ever had a CA 27-29 test? I had one a few weeks after surgery and it was in the high normal range.

Mouche

I am 99.9% positive for estrogen, on the big T for three weeks now and not sure how much my levels will be reduced.

rettemich

Thanks guys for responding. I just had a blood test done, for another issue, but never thought to ask about the estrogen level.

Rosiesride

So is the estrogen level test the same test to see if you are in menopause?  I would assume so...I will go Monday for labs to see about hormone levels and menopause...also, does it say on the pathology report if you are ER+ and PR+ or negative??   Thanks. Rosie

RedReading

I am ER+PR+HER2- Rosie. And I have met people who have 2% and those who have 95% estrogen.  

Louanne what is a CA 27-29 test?

Louanne

RedReading, here is a link for it. CA 27-29. 

Stenokim

louanne, I had the 27-29 test also about a month after surgery. Mine was a 22, which it said you want it below 38.  I wish it would've been 0, but idk if anyone's is ever 0. I did read some docs don't like that test, it can rise even if there is no cancer going on.  What were you told about it?

DawnCT

Rettimich - I may be mistaken,  but my understanding is that tamoxifen does not reduce your estrogen but rather,  it blocks the effect of estrogen on your body.   

Louanne

Stenokim, just that it was in the high normal range, and will it be tested again? It was another Dr. not the MO who tested it. I didn't know about it, obviously the result was sent to my other Doctors. It was done around 2 1/2 weeks after the surgery. I don't have another apt. with the MO until November. I'll be seeing my BS in two weeks though and will definitely discuss it with him. 

Hope all of you ladies have a wonderful weekend!

mema4

I've been on the brand name Arimidex  a short time but the gastro issues have gotten worse. Seems the stiffness and muscle pain is something I can deal with, it doesn't bother me. It's the other stuff that has gotten bad enough that I've cut back to 1/2 a pill Thursday and nothing Friday. I was just weak from not being able to eat without diarrahea (misspelled) happening during the meal then loss of appetite (prayed for that a long time). My MO suggested changing to Fareston. I see some of you are on it. What do you think of the drug?  

rettemich

Dawn, yes it does block the estrogen, I was jut curious if I resulted in any change. I know that the tests are different. The one that has the Es+- is a test of the receptors. Mine was at 98, of course. The other is a test of how much estrogen is in the body. I thought it would be interesting to see what the amounts for each was. I wish I could have the receptors tested again after starting this lovely therapy. May ask my MO about that at my next appointment in a few weeks.

Curious I have never had the CA27-29 test done. Maybe because it sounds like there may be to many variables. I will check on that too.

Rosie, yes your path report should have the ER Pr results on it. Have them give you copies. I get copies of all my records. All the Dr.'s notes surgical notes, labs tests. I even have cd's of my mamo and ultra sounds. I still need to get a cd of my rad treatments. These are your records you have every right to them. You should not have to pay for these they are yours. I think they may charge if you want the copies of the actual mamo and such films, but nothing if it's on a cd. I have a zip up binder with everything in it. LOL.

rettemich

Does anyone know if there is another way to test for ER PR besides tissue sample? Like to compare before and after.

justachapter

rettemich, what do you mean before and after?  The ER PR status is from the tumor, so they couldn't really do a before and after.  Tamoxifen binds those receptors sites so they can't grow.    At the point we use it, it is a preventative as the cancer is gone.  Hoping it stops any new cancer from being able to grow, especially in the other breast.

I was 92% ER+ and 9% PR+ and then 92% ER+ and 1% PR which was considered negative. (biopsy and then surgery) and my oncologist said that I was basically ER+ and PR-.  She said you don't see many ER+ high and PR low or negative.

Headeast

rettemich, results will vary each test. It does not mean that the medicine you take changes the ER or PR.

Memma, I do take Fareston and I am very happy with it. Almost no SE. The ones I have are so minimal I don't even care: stiffness of joints in the am, headache, only sometimes and very mild. No depression (i never knew what depression was until Tamox) no fatigue.

RedReading

I'm very interested in this Fareston. I wonder if it is an option for me. I'm going to have to ask my doc because my SE's are really affecting my quality of life. On two consecutive days my DD then my mom sat me down to ask me to please contact my doctor about them. So I'm going to write to her.

Louanne, thanks for the info on CA 27-29. Interesting.

lisa2012

Rettemich and RedReading- thanks so much for the encouragement. I am seeing my MO next week. I guess my question for him

will be- if I hurt like this on Tamoxifen, similar to AIs, and AIs are more effective at preventing cancer, then maybe I should change back to an AI. It's hard for me to think that I can really shake the SEs. I've done two years. Ruth, I know that some stuff just would happen as we get older. Our estrogen does go down… My menopause was terrible, 9 years ago. I guess I am the sort of woman whose body really loved estrogen and struggles without it. But I am alive and mostly OK.

Louanne

RedReading, you are welcome! Hope you can get the SE's straigntened out.  

rettemich

lisa, I can so relate. I went through 9 years of hell with menopause. And just when all the bs finally begins to stop I have to start this stuff. My biggest issue with the AL's is the bone loss, aches and such. I have been on such an emotional roller coaster the last few days. I really don't know if it's the Tamox or the Effexor. I'm Just So tired of it all. I see my MO next week but I really don't want to go to an AL if I can help it.

Kruise

hi everyone - I am trying to catch up on reading some posts but there are heaps! I haven't commented much any more because I haven't gone back on tamoxifen. I really had to decide whether the se's were worth it. However on saying that I am still suffering terrible aches and pains all over and especially my back. It is helpful to see many of you are also but I know I will need to get it checked out as it isn't something easy to live with. It's hard to stop my brain thinking the worst when it feels so uncomfortable and not right! But I know some can be menopause related and that's where it's hard to know what's what! 

I have been to a local bc support meeting finally the other night and am also starting a course soon called 'Living Well' run by the Cancer Society. Hopefully some helpful info there. 

Love to you all x

L2girl

kruise, 

Glad to see you back! Too bad about all your aches and pains. Get it checked out by your doctor, just to be safe, and you'll feel better. I have had some pain issues recently, too. I don't think they are related to tamoxifen? One weird one is tailbone pain. My primary care Dr. did an X-ray, and found I have some arthritis in my lower back. I am doing Physical therapy for it, and for shoulder bursitis. But, boy was I relieved that the back X-ray did not find mets! I know after BC diagnoses, our minds all go there! 

Will you be taking something else instead of tamoxifen? Enjoy your living well classes.

Kruise

L2girl - nice to see you again!! And the tailbone pain.....yes that is definately me!! Plus a bit in my right hip too. I am so glad that yours turned out to be arthritis related (lol..well you know what I mean) and it makes me feel lots better about getting my issues checked out.

It has made me decide once and for all that I need to get stuck in and lose weight and eat healthy - in other words - look after myself better! I joined up weight watchers also this past week....some accountability each week on the scales will be great for me!  

I so wish I could wave a magic wand around and make all us lovely ladies on here well again! 

On a completely different note - has anyone read any of Louise Hay's books and her ideas about subconscious thought patterns behind different illnesses? I started reading one the other day called 'All is Well' co-authored with Dr Mona Lisa Schulz and it was really interesting. It's too detailed to go into on here but one part that rang true for me was learning to express all my emotions to others - whether they are good or bad. And how important it is to keep your thoughts positive with affirmations. And keep saying the positive thoughts several times a day (setting your phone alarm to remind you) so that eventually you truly believe them. The positive thought affirmation for cancer is "I lovingly forgive and release all of the past. I choose to fill my world with joy. I love and approve of myself" and the positive thought for breast problems is "I am important. I count. I now care for and nourish myself with love and with joy. I allow others the freedom to be who they are. We are all safe and free". 

I reckon it's worth a go using the positive affirmations too - but you have to 'believe' you are healing yourself while saying them. It's no good if you keep thinking the negative afterwards - so you need to train yourself and I know it's harder to do than it sounds. Anyway just thought I'd share in case it reasonates with others too. We are all on a healing path - whether we like it or not! And I truly believe it's not just physical healing - it's mental and spiritual too!

Xox

L2girl

oh my gosh, kruise, I didn't mention it, but the third area I am going to PT for is also my right hip. Talk about synchronicity! I was walking 4 miles a day, which was great for weight loss. I lost 18 lbs. since January, but that was the only exercise I really did. In PT they are telling me my muscles are weak, that I need to stretch more and strengthen my core. I had to cut way back on my walking, too. 

Also, I have a Louise Hay book, "I Can Do It". I actually forgot all about it. I should dig it out again. I always try to keep a positive outlook. I guess I always think how lucky I am, how grateful I am, how beautiful things are. I am thankful to God for all my blessings, every day.

Yes, I agree healing is physical, mental, and spiritual, as well.

RedReading

Welcome back Kruse. I took the Living Well course. It was great. I shared some of it a few months ago. Congrats on weight watchers and deciding to eat better and exercise more. It makes a difference I think. {{{hugs}}}.

Kruise

that is such a coincidence L2girl - fancy that! Good on you with the 18 pounds. I got weigh in 2mrw so hopefully I've done alright the past week. (**crossing my fingers behind my back**).

Glad to know you found Living Well good RedReading and thanks for the welcome back. Appreciate it :-)

rettemich

Since my surgeries and following treatments, I have had NO willpower. I have been doing yoga 3 times a week at the center and working with a wonderful guy Sam to help me with meditation. It really has helped me reduce my stress. But not my weight. I am meeting with a nutritionist today, hopefully I can get a better game plan. I really don't eat horrible. And I need to exercise more, but it's hard to get motivated on your own. sigh  

RedReading

Rettemich, you should see if your cancer center has a Well Fit program. Mine was at the University in town for 12 weeks. It's twice a week for one hour each. Very doable. And nice to exercise with other women who are going through what you are.

justachapter

Rettemich,  It is hard to move forward.  I was talking to my NP oncologist a month ago and we talked about being mindfulness.  

Mindfulness is a state of active, open attention on the present. When you're mindful, you observe your thoughts and feelings from a distance, without judging them good or bad. Instead of letting your life pass you by, mindfulness means living in the moment and awakening to experience.

We were having a discussion about often if you are depressed you are living in the past, if you are anxious you are living in the future, and if you are at peace you are living in the present. (Obviously medical issues/traumatic situations can cause these on a short term basis, but the focus is to move beyond and live in the present). 

With that in mind, I keep myself busy!  I have a trainer at the gym, go to classes and after being home for 12 years with my kids I am heading back to work on Monday.  It is what I need to do, to keep me in the here and now.

Good luck, but I think many of us go through this with the "what now".

sloyd66

Hi Ladies,

I take my tamox everyday at 1pm. So far so good. Only one  the weekends I may take it after 1 like 3 or so. But only cause i'm running around. I'm learning everyone's body is different when it comes to meds. I have not had any SE and been on it since Feb. (knocking on wood) So as what was said you have to experiement the different times that's good for you.