Calling family members with "Drip Dry Lapels" .... PLEASE...
All of you know I was dx on May 20th IDC... tumor 1cm... not under not over..all test come back "grey" swinging the treatment plan back and forth like a damn pendulum... well today it was more of the same and I am feeling as frustrated as hell...here we are over 2 months from dx and I will be waiting an additional two weeks for the final drum roll...
Here's what I found out at today's meeting with Onco...It seems that I am one of the 6% of the population whose test results show that my body will not matabolize Tamoxifen (sp?)... So, once a month I get to have a monthly injection of Zoladex (this is to surpress my ovaries) this will go on for 6 to 12 mo then will go to every 3 months... coupled with a daily dose of Femera...... Okay family.... I need all the details on these two... for the last 2 months I've been researching Tamox... no I need the info for these two.... HELP!!!
My tumor is one tenth of a centimeter too small to qualify for the TaylorX Trial...(see I should have waited another week before going to get it checked)
My onco has decided that he isn't real comfortable with the HER2 results... three tests... three differnt results... so he is sending for the slides from the pathology group that performed the first two, and having KU Med Center run it themselves in their lab... then he is taking my results and all of my records to the .......READY FOR THIS ONE.... to the panel....here he will present my case and they will pretty much vote on which way to go....
4 rounds of AC (that's right isn't it??)... or straight to RADS...
This is all dependent on how the MRI turns out that I will have done on Monday.. he doesn't like the discharge from my good boob... so MRI this friday at 10 am.... He wants me to go ahead and do a consult with a radiation oncologist but doesn't want me to schedule anything more than that until we find out which way the final pendulum will swing on Aug 12th...
I'm really not handeling today's appointment well.... I just want to be "NORMAL" .... okay I have breast cancer.... IDC.... why can't it just be standard for me too???? why all this... okay... enough computer is getting ready to short curcuit...
~t
(notice the little t... feeling really puney today)
Comments
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Poor taleena ;(
Wow, I feel really bad for you. You have been pulled back and forth from the beginning and not even by your own doing!! Not like your fighting the treatment they are suggesting. Rather, they are having a difficult time suggesting a treatment plan!!
However, I do see some positive (I know, I know....if you were close enough you would probably clobber me right now!).
Well, for one, they have what I think is a better idea of which way to go. Sounds like they are being very thorough and very careful in their final decision (and in checking your other breast!). Now there will be a whole panel of them that will decide collectively and thats a good thing! That means if you feel comfortable and trust them that you can rest a little easy now knowing that in 2 weeks, you will know for sure!!
If they say Tamoxifen is a no go for you....I would ask if the enzyme test HAD been run to check for that, since you were not aware it had been. Double check that those results belong to you! I wanted the test done, but my Oncologist said it is not publicly available yet. So now I am wondering how sooo many people have managed to get it? Is it by clinical trial only? Or does she mean my insurance will not pay for it? I may ask my GYN when I see her next week what she thinks about running it? Maybe my Onc misunderstood what I was asking?
Hang in there sweetie, take a few deep breaths, dry those eyes! We do not need your keyboard shorting out, not now!! I know it is frustrating, but waiting is what we do best on this crappy journey we call BC. I tried like heck to let you catch up!
You could have done it MY way, but noooooo, you had to go do it YOUR way!! Oh wait, but you won....never mind.
Today has been a crappy day for alot of us. I say we all sleep on it and hope that tomorrow will be better.
Sending hugs and good vibes your way. Now if you like, you can go get a pillow and beat it up. But don't blame it on me if feathers go flying eveywhere!!
Pammy 0 -
Yes, the enzyme test is theAkiss4me said:Poor taleena ;(
Wow, I feel really bad for you. You have been pulled back and forth from the beginning and not even by your own doing!! Not like your fighting the treatment they are suggesting. Rather, they are having a difficult time suggesting a treatment plan!!
However, I do see some positive (I know, I know....if you were close enough you would probably clobber me right now!).
Well, for one, they have what I think is a better idea of which way to go. Sounds like they are being very thorough and very careful in their final decision (and in checking your other breast!). Now there will be a whole panel of them that will decide collectively and thats a good thing! That means if you feel comfortable and trust them that you can rest a little easy now knowing that in 2 weeks, you will know for sure!!
If they say Tamoxifen is a no go for you....I would ask if the enzyme test HAD been run to check for that, since you were not aware it had been. Double check that those results belong to you! I wanted the test done, but my Oncologist said it is not publicly available yet. So now I am wondering how sooo many people have managed to get it? Is it by clinical trial only? Or does she mean my insurance will not pay for it? I may ask my GYN when I see her next week what she thinks about running it? Maybe my Onc misunderstood what I was asking?
Hang in there sweetie, take a few deep breaths, dry those eyes! We do not need your keyboard shorting out, not now!! I know it is frustrating, but waiting is what we do best on this crappy journey we call BC. I tried like heck to let you catch up!
You could have done it MY way, but noooooo, you had to go do it YOUR way!! Oh wait, but you won....never mind.
Today has been a crappy day for alot of us. I say we all sleep on it and hope that tomorrow will be better.
Sending hugs and good vibes your way. Now if you like, you can go get a pillow and beat it up. But don't blame it on me if feathers go flying eveywhere!! Pammy
Yes, the enzyme test is the result I received today... making me one of the 6-7% of people who produce the enzime that cannot take Tamox... go figure... And since I have a copy of the report (Thanks to my dr.. who I still really like... it was actually performed at the Mayo Clinic... don't think they mixed me up.. name checked yep mine... DOB... yep...it's right.. patient ID yes that's mine... age yep 42) lets see...
"Predicted poor metabolizer"... (Quoting from the report) "This patient has a genotype associated with enzyme activity. Caution should be exercised when treating this patient with drugs metabolized by CYP2D6" (This sounds like star wars)... drugs metabolized by other pathways must be considered"... it goes on to say a bunch of other stuff... so no it isn't part of a study..The test says Rapid DNA Extraction: CYP2DD6 Genotype.... seems I have two copies of this gene... makes me a no no for tamox..
I guess the good news in all of this is that my BRCA test came out negative...
yeah sleep...maybe that will help... eyes are getting puffy...
~t0 -
Taleenataleena said:Yes, the enzyme test is the
Yes, the enzyme test is the result I received today... making me one of the 6-7% of people who produce the enzime that cannot take Tamox... go figure... And since I have a copy of the report (Thanks to my dr.. who I still really like... it was actually performed at the Mayo Clinic... don't think they mixed me up.. name checked yep mine... DOB... yep...it's right.. patient ID yes that's mine... age yep 42) lets see...
"Predicted poor metabolizer"... (Quoting from the report) "This patient has a genotype associated with enzyme activity. Caution should be exercised when treating this patient with drugs metabolized by CYP2D6" (This sounds like star wars)... drugs metabolized by other pathways must be considered"... it goes on to say a bunch of other stuff... so no it isn't part of a study..The test says Rapid DNA Extraction: CYP2DD6 Genotype.... seems I have two copies of this gene... makes me a no no for tamox..
I guess the good news in all of this is that my BRCA test came out negative...
yeah sleep...maybe that will help... eyes are getting puffy...
~t
I am sorry for all the grey. but thank God this is all at a very early stage. and the BRCA test is neg. it could be so much worse. I am praying for you that your DR.'s come up with the very best plan for your long survival.
Hugs, jackie0 -
T
just read this new post. I am sorry for all of this-am praying that they will figure out what to do so they can treat you and you can be on the mend!
Love,
Patty0 -
I am so sorry that all this
I am so sorry that all this has come down on you. As far as the TailorX study, my tumor was only 1 cm also but my grade was 2 so maybe that was why I was accepted for it. It is such a bummer that there are more tests but it's good that they want a clearer opinion on the Her status. And then not being able to do Tamoxifin. There are lots here that have done the Femara. They all have some SE and you might not have any of them. But don't you feel good that they are going to submit all your diagnosis to a panel and that you will have a group helping to decide the best course of treatment.
Try to take a big, deep breath and let it out. And cry all you need to, tears can be good for the soul. And know as everyone has said that we are here for you and we will hold your hand, dry your tears, hug you and do whatever we can to help you through all of this. Glad to know that they are taking a good look at her other breast and I am hoping that it is nothing serious.
We love you T (and you are always a big T) and you will get through all of this. Take it one day at a time. And yes, I wish you were in Washington instead of facing any of this.
Stef0 -
Awww T~ don't cry
I know the waiting is frustrating but there is some really good info in your post. For one I applaud your onc for testing you for Tamoxifen. Alot don't and women take it for 5 years and have no idea whether it is working or not. A popular train of thought is that if you have se then it's working but I've seen many women with horrific se and were poor or intermediate metabolizers. I'm an intermediate metabolizer and the se were really bad for me. So at least you don't have to waste your time with that. Femara is the one AI I haven't tried and probably won't. I haven't had much luck with any of the them and the aromasin is dumbing me down pretty good.
One thing I picked out is it seems your onc is really looking after you and is determined to do the best thing for you. That's worth alot Maybe even a little patience??
I think it's really good he is carefully and wants to check everything out thoroughly. This will give you the best tx and more success for your future. Grey is good. It means not completely bad, possibility of good results. The 12th seems like a long way off but it will go by quickly.
Hope it all works out for you.
hugs
jan0 -
T
Okay honey I know its hard, its confussing and you want it done and over with. There is nothing any of us can say to make it better. However if you reach out your virtual have you will find all of us reaching out for you. Your not alone remember that, each and every one of us are here for you.
Hugs to you my friend
tjhay0 -
Late Answer...sorry!
I just saw your post~ that's another thing with these boards, isn't it? We can go from
Top O'The List almost immediately to page 2 or 3 in a heartbeat! I am so sorry you were having a tear-filled day, but also very glad you had us to come in and "talk" to. Even when we can't remedy the circumstance, it is a safe place to land, isn't it?
I have nothing poignant to add to the strong,compassionate voices you have already heard; just know you are being well cared for by the medical team who wants to ( AND WILL!) find the treatment plan for you, and you are supported and loved by your family here on the boards!
Hugs,
Claudia0 -
T, I am so sorry that youchenheart said:Late Answer...sorry!
I just saw your post~ that's another thing with these boards, isn't it? We can go from
Top O'The List almost immediately to page 2 or 3 in a heartbeat! I am so sorry you were having a tear-filled day, but also very glad you had us to come in and "talk" to. Even when we can't remedy the circumstance, it is a safe place to land, isn't it?
I have nothing poignant to add to the strong,compassionate voices you have already heard; just know you are being well cared for by the medical team who wants to ( AND WILL!) find the treatment plan for you, and you are supported and loved by your family here on the boards!
Hugs,
Claudia
T, I am so sorry that you have to wait longer to be able to jump off the fence, but I am also very happy that they are asking for a second opinion, if they are not sure. I had second and third opinions several times, with my tumors finally sent to Vanderbilt for more review. Although the waiting stinks, you can be assured that the results weren't done hastily and that something might have been missed.
You've been so courageous through all of this, continuing to work and take classes, along with your family responsibilities. You have been a great example for many. I know that all you want to do is fight the beast, and the tests will be done soon, and you can really go to battle.
Joyce0 -
T,jk1952 said:T, I am so sorry that you
T, I am so sorry that you have to wait longer to be able to jump off the fence, but I am also very happy that they are asking for a second opinion, if they are not sure. I had second and third opinions several times, with my tumors finally sent to Vanderbilt for more review. Although the waiting stinks, you can be assured that the results weren't done hastily and that something might have been missed.
You've been so courageous through all of this, continuing to work and take classes, along with your family responsibilities. You have been a great example for many. I know that all you want to do is fight the beast, and the tests will be done soon, and you can really go to battle.
Joyce
I am so sorry for your
T,
I am so sorry for your frustration and tears! All the tests and waiting for results I know is unbearable. Your dr sounds like he is making sure they give you the best possible care and treatment and this is a good thing.
I pray this part ends for you soon.
Hugs,
K0 -
Thanks Jackie... I amrjjj said:Taleena
I am sorry for all the grey. but thank God this is all at a very early stage. and the BRCA test is neg. it could be so much worse. I am praying for you that your DR.'s come up with the very best plan for your long survival.
Hugs, jackie
Thanks Jackie... I am feeling better today.. breathing a little easier.. I guess knowing that a panel of oncologists will decide which treatment option is right for me will at least make me feel more confident no matter which way the pendulum swings.
Hugs...
~T0 -
Thanks Stef... I am gladfauxma said:I am so sorry that all this
I am so sorry that all this has come down on you. As far as the TailorX study, my tumor was only 1 cm also but my grade was 2 so maybe that was why I was accepted for it. It is such a bummer that there are more tests but it's good that they want a clearer opinion on the Her status. And then not being able to do Tamoxifin. There are lots here that have done the Femara. They all have some SE and you might not have any of them. But don't you feel good that they are going to submit all your diagnosis to a panel and that you will have a group helping to decide the best course of treatment.
Try to take a big, deep breath and let it out. And cry all you need to, tears can be good for the soul. And know as everyone has said that we are here for you and we will hold your hand, dry your tears, hug you and do whatever we can to help you through all of this. Glad to know that they are taking a good look at her other breast and I am hoping that it is nothing serious.
We love you T (and you are always a big T) and you will get through all of this. Take it one day at a time. And yes, I wish you were in Washington instead of facing any of this.
Stef
Thanks Stef... I am glad that they ran the test rather than having me on it only to find out it didn't work...that would have been much worse.
Hugs and gratitude.
~T
okay... I put my "big girl" panties on.0 -
Thanks Jan... your right...phoenixrising said:Awww T~ don't cry
I know the waiting is frustrating but there is some really good info in your post. For one I applaud your onc for testing you for Tamoxifen. Alot don't and women take it for 5 years and have no idea whether it is working or not. A popular train of thought is that if you have se then it's working but I've seen many women with horrific se and were poor or intermediate metabolizers. I'm an intermediate metabolizer and the se were really bad for me. So at least you don't have to waste your time with that. Femara is the one AI I haven't tried and probably won't. I haven't had much luck with any of the them and the aromasin is dumbing me down pretty good.
One thing I picked out is it seems your onc is really looking after you and is determined to do the best thing for you. That's worth alot Maybe even a little patience??
I think it's really good he is carefully and wants to check everything out thoroughly. This will give you the best tx and more success for your future. Grey is good. It means not completely bad, possibility of good results. The 12th seems like a long way off but it will go by quickly.
Hope it all works out for you.
hugs
jan
Thanks Jan... your right... today I feel much better... I do recognize that at least this way I will know that whatever treatment they decide on will be truly what is best for my specific case... not cookie cutter here... lol..
Hugs,
~T0 -
To all my family ofKayla1 said:T,
I am so sorry for your
T,
I am so sorry for your frustration and tears! All the tests and waiting for results I know is unbearable. Your dr sounds like he is making sure they give you the best possible care and treatment and this is a good thing.
I pray this part ends for you soon.
Hugs,
K
To all my family of warriors... thank you so much... today I feel much better, frustrated yes...but no longer an emotional basket case...
I always knew I was an odd ball.... but really geezz you've got to be kidding... on top of everything else I can't take Tamox... that just took the cake.... I couldn't write this in a book and have anyone believe it..... it is almost comical and now I find myself laughing at the entire situation... If I wasn't living it... I would think ... "Unbelieveable"..
Hugs to all of you my dear friends..
~T0 -
So sorry, Ttaleena said:To all my family of
To all my family of warriors... thank you so much... today I feel much better, frustrated yes...but no longer an emotional basket case...
I always knew I was an odd ball.... but really geezz you've got to be kidding... on top of everything else I can't take Tamox... that just took the cake.... I couldn't write this in a book and have anyone believe it..... it is almost comical and now I find myself laughing at the entire situation... If I wasn't living it... I would think ... "Unbelieveable"..
Hugs to all of you my dear friends..
~T
that this has to be extra-special difficult for you. It's hard to revel in being unique when the uniqueness makes treatment decisions so much more challenging. But it sounds as though you have a VERY thorough doctor, and for now you just have to trust him.
Hang in there. As you see above, you are well-loved here. I'm glad you're doing better tonight. I'll keep you in my thoughts and prayers, my friend adn sister.
With love and hugs,
Debi0 -
glad to see the puney t hastaleena said:Thanks Jackie... I am
Thanks Jackie... I am feeling better today.. breathing a little easier.. I guess knowing that a panel of oncologists will decide which treatment option is right for me will at least make me feel more confident no matter which way the pendulum swings.
Hugs...
~T
glad to see the puney t has been taken back....
T,
thinking of you....you have been so strong for others....hang onto the good news
jojo0 -
Thanks jojo... yes that punyjojo elizapest said:glad to see the puney t has
glad to see the puney t has been taken back....
T,
thinking of you....you have been so strong for others....hang onto the good news
jojo
Thanks jojo... yes that puny t really doesn't become me does it... Thank you for your kind words.0 -
Glad you're feelling better todaytaleena said:To all my family of
To all my family of warriors... thank you so much... today I feel much better, frustrated yes...but no longer an emotional basket case...
I always knew I was an odd ball.... but really geezz you've got to be kidding... on top of everything else I can't take Tamox... that just took the cake.... I couldn't write this in a book and have anyone believe it..... it is almost comical and now I find myself laughing at the entire situation... If I wasn't living it... I would think ... "Unbelieveable"..
Hugs to all of you my dear friends..
~T
I'm so sorry I didn;t post sooner, i don't know how I missed this post. (I'll just ahve to blame it on the pain meds:)
Anyway at least you've got your spirts up now. I know the really frustrating part is the waiting, you expected to come back from vacation and find out what the plan was and that didn't happen. The good news is that you really are getting the best care out there for you personal and individual situation. And that the right tests are being run for you. It would of been really frustrating to find out in the middle of treatment, that it wasn't working for you. The panel thing actually sounds wonderful, because you're getting the benefit of several doctors and thier opinions with out having to see each one separately.
Hang in there T you'll get through the waiting and start fighting this beast before you even know it and then you'll really be able to sit back and Laugh. Just think of all the experience you'll be able to share to new survivers who don't have an A typical experience!
God Bless
Aurora0 -
Taleenataleena said:Thanks Jan... your right...
Thanks Jan... your right... today I feel much better... I do recognize that at least this way I will know that whatever treatment they decide on will be truly what is best for my specific case... not cookie cutter here... lol..
Hugs,
~T
That is a good way
Taleena
That is a good way to look at this. You are being treated as an individual and your treatment will be designed with the best outcome for you in mind. Happy the Big T is back.
Stef0
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