TRIPLE POSITIVE GROUP

Howdy all - just dropping by for a minute to post this picture of me and SpecialK at the Bucs game yesterday. We lost - but it was a beautiful day and I got to see SpecialK - so it was a good day!!

bren - thanks!  We had actually met before, but so good to see Linda again -  so this was a reunion!  Sadly, not a good day for the Bucs but enjoyed the sunny day anyway.

What a great picture - how fun for you both!

There are two home games left and I have guest rooms! 

Happy Dance for you Mommato! You will lose it. I did.

Mommato I had my Estradiol levels tested for 5 months PFC because I went into chemopause. My MO started me on Anastrozole right away instead of Tamoxifen. She felt given my age and age of my mom & sister menopause that my cycles would not return… but wanted to be sure.

I was on Anastrozole about 3 months when I got these results: FSH 102.6, Estradiol <10.0

Appropriate and interesting topic that I am currently dealing with.

After 3 blissful years in Chemopause, I just fell out of it and got my period back last week at age 51! Exactly 3 years to the day I started chemo.

At first, I was terrified and went immediately to University of Penn ER fearing it was uterine cancer caused by Tamoxifen, but my FSH levels showed that I am not in menopause, and TV Ultrasound showed a functioning cyst. I am scheduled for a Hysterectomy next week to stop my period,and also take care of fibroids that I have had for years. Has anyone in our Triple Positive group experienced anything like this in their early fifties? Never a dull moment!

Ella I turned 50 two weeks PFC. I was in peri-menopause. But wow 51 and it's back.

I convinced my Onc to start me on an AI and not Tamoxifen even though I was still having periods going into Chemo, but I was 55.  He agreed, but checked my Estradiol levels for 5 months to make sure I stayed in menopause.  He told me those levels are difficult to evaluate (even though I go to the Univ of Michigan) and he said the best place to check those levels was the Mayo Clinic where mine were sent for evaluation.  I stayed in menopause.

Yay Linda and Special K! So wonderful that you guys get together and it is warm there. I'm not sure what I would do if the weather was warm at a football game... Mommato3, congratulations! You are looking fantastic! I joined Weight Watchers after Herceptin and I've lost ~22 lbs, but still have more to go. It isn't just food and sleep during chemo that makes you gain, but also the steroids. On to healing for you :-)

Ella, that is scray news for me.  I was not in menapause when I started chemo ealier this year at age 50.  Just started Tamoxifen and certainly hoping not to start my periods again.  Don't miss them at all!  Special, Linda, Mommato3, you all look great.  My hair is coming in pretty good now, but way more gray.  Of course I'd been coloring my hair for a few years so I didn't know how bad it was.  I'm still wearing my wig because my hair is soooo short.  I've had long hair my whole life so it's a big adjustment for me.  By the way, weather in Jax has been wonderful this week.  Lows in the 50s, highs in the mid 70s.  I could get used to this.

I'm a little freaked out after speaking to my MO a little while ago. Apparently her NP had my CA 27/29 marker checked when she ordered my regular blood work. It is slightly elevated at 50. My MO told me she doesn't order these tests unless you are metastatic because they are typically unreliable. But because she knows about it, she had to go over my options with me. I could have a PET scan done or just get retested every time I go in for my Herceptin to see the trend. I told her I'd wait and get retested when I go in on the 17th. She said she wasn't concerned because it was just slightly elevated, I just finished chemo, and I have no symptoms. She also said she hated to call me with the results because she knew the stress it causes. What are the chances this would be accurate after everything I've been through? I never had it tested before so this could be normal for me?!?

Pbrain and Lago and anyone else - come on down - said in my best Bob Barker voice. I have a spare room also - and since the Bucs are so good "NOT" it would be easy to get tickets and I have plenty of Buc's gear you can borrow for the game LOL. I am not going to the next game but will be at the last game against the Saints and SpecialK and I plan to get together then again. This forum is great but it is very nice to meet someone in person from here and I would love to meet all of you someday.

Update for you all - my liver enzymes are still elevated but trending down a bit so that is a good thing. Had tumor marker blood tests and they were in the low end of normal. about the same as they were when I was first diagnosed. My MO does not test for these normally but uses them as a tool if there are other reasons to run them - mine being the liver function. However, he now feels very confident that he and my GI have ruled out any other reason for the elevated enzymes other than my body not liking chemo and I am good with that.

Pbrain - my treatment center figured out how to give me the Herceptin without the preservative finally. I had to threaten to go elsewhere for them to try it. They will do it for at least the next three treatments and see if that helps improve my test results. We shall see.

Thanks Mommato - I hope your bloods test start trending down also!!. My enzymes actually got worse after treatment ended but are now on a downward trend - but I am 5 months PFC. I was freaking when they were going up. I would tell you to relax and be patient but that is really not very possible - at least not for me. We don't want to do needless tests as these all come with risks but if the stress gets too much then I think I might ask for tests to rule other things out. I think I am finally at that point where I can relax about they enzymes

Pbrain, we're here for you. I don't know how much help I can be, its winter in PA too, so I'm also pretty blah. I feel old and tired. Energetic people really annoy me lately and I'm not motivated to do as much as I used to like take classes or do volunteer work. Now, I just put in my required hours at work (no staying late or bringing work home), and I sit and veg with my husband and my critters. I believe some call this "relaxing", which was previously an unknown concept to me. Sometimes I think its my priorities that have changed and not my energy level. I may not be my old peppy self, but maybe my body needed a rest and I'm finally listening. I don't volunteer to take on a million projects, but now I have more time for myself and my family. I decided not to finish my Administrative/Principal Degree, way to stressful a job. I'm much lazier, but maybe its ok, I'm not sure yet, I'm still getting used to the new me. Sometimes I think depression is the wrong word because that conjures up the image of sadness. Its more like being in limbo and you can't decide if you are really participating in your own life or just watching it go by. I never tried counseling, so I can't confirm if it helps, but I don't think it could hurt.

I still don't know how to think about the future, so I don't. I don't want to dwell on the possibility of recurrence, yet I'm not ready to say I'm cured, so I just try to not think about the future at all.

Hope it helps to know others understand and are experiencing many of the same feelings. Wishing you peace.