Appt today with my ONC - tamox or AI??
 

I am going to see my onc today, and I am going to talk to him about my ER+ going from 30 to 73 after chemo. Is it not a good idea to be taking tamoxifen because of the cross talk?? I might be better off asking me to check my blood to see if I am thru menapause then switch me to an AI??

Because of crosstalk can tamox be a bad thing for me???

Any thoughts??

Re: Appt today with my ONC - tamox or AI??
 

Hi,

If you're hormone positive you do need to be taking hormone therapy of some sort, your Onc can do an Estradiol test to determine if you're post or pre menopausal, however my Onc said periods can return up to two years after treatment so I had an ooph to enable me to take Arimidex, no regrets and I still take it almost eight years on!

Re: Appt today with my ONC - tamox or AI??
 

Hi Tricia, what has been your experience with any side effects from the Arimidex? I am 56 and gone several years without a period so I'm figuring my oncologist will put me on it once I finish my 6 rounds of TCH in March and continue on my Herceptin and Arimidex together, he has already mentioned it.

Thanks!

Carol Ann

Re: Appt today with my ONC - tamox or AI??
 

PS Love your kitty cat! I have two -- Sweetie Pie and Gregory. :)

CA

Re: Appt today with my ONC - tamox or AI??
 

I had an oo and hyster in 2010 out of concerns of other gynecological cancer due to family cancer history. Thought I'd be switched to an AI, but my oncologist continued to give me Tamoxifen.

Then the oncologist moved his practice to his home town (too old for the hourly commute? :) and was replaced with a young doctor. I'd taken about five years worth of Tamoxifen altogether by then and popped the question. He checked my record and prescribed Exemestane (Aromasin).

Re: Appt today with my ONC - tamox or AI??
 

Hi Jackie, what, if any, side effects have you had? Thanks!

Carol Ann

Re: Appt today with my ONC - tamox or AI??
 

Carol Ann,

Due to my very injured brain, I really couldn't tell which symptoms might have been caused by Tamoxifen. As my dear husband had retorted (when I blamed the delay of the diagnosis on him): "You are always tired - ever since I've known you ... :)

Tamoxifen did increase the thickness of the lining of my uterus (the surgeon said that there's hyperplasia found in the uterus). My request for a hysterectomy/oophorectomy was approved based on personal and family cancer history (I located the HNPCC cluster after putting in all the cancer incidents in my family when 2nd Brother was diagnosed with colon cancer - Mother had already had NHL) and the BRCA result.

Linn,

How did your appointment go? What did you all decide?

Re: Appt today with my ONC - tamox or AI??
 

Well,

He tried to make a fast get away and not want to answer any questions. And I said wait, wait I want to talk to you about taking Tamoxifen. I dont understand all of this but this is what I said and his reply.

Do you think Tamox could be causing my feet and hands to hurt?

Answer: It could be

Can I be switched to an AI

Answer: You are too young to be post menapausel....How old are you? I tell him 48 then said I thought Chemo threw me into menapause, so I guess I am confused. He said do you still have your period? I said no because I have a Mirena (IUD) for birth control and it stops your period. Then he said well having the IUD and taking tamox can cause higher risk of blood clots so nothing immediate but you need to probably have it removed.

I then said because my ER went from 30+ to 73+ after treatments is that a good thing??? I have read about the crosstalk, and I don't know if that is a good thing to take because of my change. He said, Oh that cross talk thing has been studied for the past 15 years on mice and rats and you don't need to worry about that. I said well when this all started I wanted to have Projecta and you said no so would I get it today??? He said absolutely I would!!! Well, I said don't you think you should take FSH, Estadial and one other kind of blood work test to see if I am post menapausal and an AI might be better for me???? He said we could do that but you are awful young to be post menapausal.

After saying I want this blood work done and if it says pre-menopause then fine I will stay on the tamoxifen I guess even if it causes my feet and hands to hurt (which maybe it isn't that a all)It could be neropathy from all the chemo drugs.

My thought was if Crosstalk is real, my big change in ER, and if post menapause then to make the best decision for me would change to an AI.

All he ever says when I see him is what are you doing for fun?? Are you going out and dancing and drinking....He doesn't want to discuss things that are most important to me. He is nice but I want to talk about these things and he just blows me off kind of.

However, after pushing I got the blood tests done and called Friday to find out what the results and she was supposed to call me back and didn't. I had my appt on Tuesday and they said I would know within 48 hours! Well, again Friday they should have definately had them and should have been able to look up on the computer.

I will call and have them fax them to me because I want to see if I am still pre or post!!

I just don't understand why he doesn't believe in crosstalk and how that is old stuff.....

On a side not about my port.....She scheduled to have me comeback in 8 weeks to have it cleaned. I said will I went 5 months this time, so why now 8 weeks??? Well, that is protocal and again it might be but it was not a concern before. I am not going to drive 40 minutes 1 way and take an hour off work becuase even though they close at 5 I need to be there at 4 to clean port. I said can't I just come in at 4:45 to clean my port and she said no they have to have time to do all the paperwork and 4 is the latest. Geez, it take 1 minute to flush the port.

A friend went with me and when we left she said....Wow, Chrystal you need to change doctors!! And after this blood test comes back I might just do that, but I just don't know where I will go either.

Re: Appt today with my ONC - tamox or AI??
 

Chrystal,

It sounds like a teaching hospital or an oncologist that is associated with a university would be a better fit for you. You are cutting edge.

I see Nurse Rachet really pissed you off as well.

I think your friend is right. It might be time to switch.

Re: Appt today with my ONC - tamox or AI??
 

I called the hospital and they had me sign papers to get blood work results. If I am looking at it right I am post menaposal.

<5 for estradiol

Luteinizing Hormone is 31.11

FSH is 57.52

So I think I need to be taking an AI and not tamox if they do have crosstalk.

Re: Appt today with my ONC - tamox or AI??
 

Silly question - but do you have a regular gynecologist to help interpret your results? And if you are in menopause, why not get the IUD out? IUDs never stopped my period (of course, that was decades ago, lol).

If you are ER+, you need to take some kind of anti-estrogen, whether it's tamox or an AI.

And you need to find a new oncologist! Another question and you can tell me to mind my own business: Why do you still have your port in if you are no longer receiving chemo or Herceptin? I had mine removed about 5 weeks after my last Herceptin.

I can feel your frustration and am sending a hug to you and a something less kind to your onc!

Janis

Re: Appt today with my ONC - tamox or AI??
 

I think they are waiting for two years NED

Re: Appt today with my ONC - tamox or AI??
 

Good luck on finding a new doc!

Re: Appt today with my ONC - tamox or AI??
 

I went to my primary doctor yesterday, and I just love him!! He hit the nail on the head when I told him my feelings. He said it sounds like he is being to "Cavalier" and that is exactly it!! He said go to Indiana Unversity or he could give me a referal to a doctor in Chicago. But I decided I have an appt with my PS on January 27th, so I will talk to him about an ONC at IU. IU is a teaching hospital so he felt they will be the one to have trials and be more on the cutting edge of things. Hopefully, I won't ever have to go their for a reoccurrance, but I want to feel like I am being heard and not taken for granted or a number.

When my feet and hands were hurting they did an echogram, and I asked the ONC why did I have that for my feet. His reply; I don't know, and I said but you ordered it???? Then he glossed over it and back to having fun. I realize he doesn't want me to worry, and I don't know that I am. However, I want to be the most proactive and preventative I can and NOT be the perfect word "CAVALIER"!!

My primary doctor said about my feet and hands.....He said oh yes I have had patients and that is more common then not having that trouble from Tamox. Then he said for some reason ONC's will act like NO that isn't it but when one of his patients went off it stopped. Also, he gave me a new Vitamen to take or try and he said it really helped another patient of his with her hands and feet!! I picked it up last night. :)

He took time, and I was heard!! My primary doctor and my PS are wonderful!!! Hopefully, soon I will have a new ONC that is the same.