TRIPLE POSITIVE GROUP
Comments
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bucky - ha ha ha ha!!! Your kitty sounds just as psycho as mine. I am a huge pet lover, but wow, this is one cat that I really don't like. It takes a lot for me to say that! I am definitely keeping an eye on it - yes, mine are superficial, but she bit DH deep a few months ago, and I was quite worried about that one. Fortunately it got better. Fortunately for DH AND the psycho kitty. And yeah, she's healthy and will probably outlive all of our other cats, too!
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Bucky...bahahahaha! I have a black cat but she isn't psycho thank God. Even if she were I would have a hard time getting rid of her too. When you've had them this long they become like children to you. Would the doc get rid of his kid if it bit him?
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Thank you SpecialK. I'd love to know what they say in light of the newest study/practice changes, what they recommend NOW as compared to two years ago
I do remember you writing about how outstanding your tx team was so I will look forward to the answer!Good news: My cousin only has 2 Herceptin left. WOO HOO!! She's a strong cookie.
Bad News: My 75 year old aunt was called back for a mammo redo Tuesday. They could see something so did an ultrasound. She said the tech was incompetent (heh), and they couldn't get an image of it on US. So they did yet a 3rd mammo, from one direction she could see a small circular white mass, but from the other direction it wasn't evident.
The radiologist told her he is 99% sure it is not cancer, but they want to wait 6 months and check again.
Gonna be a long 6 months.
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The only thing I took was the Acetyl-L-Carnitine. I had nueropathy (numbness) in my left heel and initially pins and needles in my fingers. Once I started I never had it in my hands again. My heel would go away then start up again each TX. By TX 5 in didn't go away. I still have it. Not too bad but it's been 1.5 years so it doesn't look like its' going away. I agree just one study and mega dose. Mega dose is different.
I have noticed that you gals that are grade 2 tend to be higher ER/PR. That makes sense.
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95% er and pr positive and grade 3 here - I never seem to make sense!
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rozem cancer doesn't make sense we just try to make some sense of it. There are always exceptions.
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Lago..I'm tired tonight, so be patient, my brain is only half firing, lol. Why does it make sense us having higher er/pr and being grade 2? Perhaps ours is so much more hormone driven, and thus a bit lazier?
I am leaving tomorrow to go visit my sis-in-law who was just diagnosed with ovarian c.
She is looking for me to be a sort of motivational cavalry....reaching for my bootstraps to pull us both up mighty hard this evening..0 -
Yeah, exceptions, I'm 98% ER and 20% PR grade 3.
I had my MUGA yesterday. How does 48% EF sound? Yeah, thought so. Sigh. Herceptin break. MO says get Echo tomorrow, should be above 50% so I could continue next thursday. So pray it nudges up just two or three points! LOL anyway, I went to infusion to get deaccessed, they did it pretty quickly so I could go home, but I am in the chair a nurse comes rushing in the room and says don't deaccess! As my nurse turns to her with the needle out in her hand. Sigh. LOL yep,.low on magnesium so needed an infusion. Was thrown by MUGA results or I might have said wait for the results, but no. So double stick time. Whew, am I having FUN yet?!? LOL0 -
Moon, mine was sortof like yours, 90%ER, around 20%PR (can't remember exactly) and grade 3
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I'm stage 2 and mine was only 40%er and 14%pr.
Ok, catching up...on the diet issue, I am sure glad I don't have to worry about what the free range, age free organic chickens ate. I spend enough time reading labels as it is. I have a vision of asking to speak to the farmer If there is soy in his chicken feed. Actually, it might be worth the question just to see his face.
Also was interested to read the sugar issue. I feel better about the half package of gummy bears and the 8 golden oreos I ate on my ten hour drive back today. Back on my healthy diet tomorrow.
Moon, sorry to hear about the echo results. I hope it pulls up. You might ask for another re-read. My onc says it is somewhat subjective by the reader. Mine dropped to 50-55 for the lowest I know of, down from the original 65%. That was at the 9 month mark. When I finished, it read at 55-60. Go figure. Three months out it was back to 60-65, and I will have another one next month.
I laughed out loud when Dance said to walk away from the path report. Everytime this board starts talking about path reports, I have to get mine out and re-read it. And then look up the definitions again. If I have a recurrence, that lower risk of recurrence rating won't mean much.
Gee whiz...sending you strength to help your SIL.
Bucky...I do feel much better since knowing. I have some pain under my shoulder blade and a spot on my rib that was tender, so I think that is what the Onc reluctantly used. I know that it doesn't give any guarantee, but at least for a little bit I feel better. It does drive me crazy to know that they are testing my circulating tumor cells in the study I am in, but no one knows what they are. Since I lobbied so hard for the petscan, and finally won,I am a little nervous about trying to get my onc to do the test. I may hold off on that for awhile. If it was critical, he could get at the results of the study, and at some point, it will be opened up.0 -
ok...going to bed soon but wanted to post a question
is being under 45 at diagnosis enough of a criteria to get tested for brac1/2? genetic counsellor says yes, onc says no. Problem is here in canada i have to apply to get tested and i don't think age will be enough for me to qualify. if i want it done privately its 3k
i am have the prophy bmsx but its the ovary removal i am struggling with. Obviously with a positive result that would be a no brainer
thoughts? experiences?
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wanted to add i have zero BC or ovarian fam history on either side
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rozem - Also being of ashenazi jewish descent can also be an indication for BRCA testing.0
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I never mentioned my hobby is bad poetry, did I? Well, if I write it, you get to read it. Blame chemo brain.
MUGA, MUGA,MUGA
Writhing through my brain
MUGA, MUGA, MUGA,
Driving me insane
Went to sleep at one o'clock,
Awake again at two
Just three percentage points,
What am I to do?
Gonna try an echo
Gonna try for more
Hope to catch three little points
To help bump up my score
Sound maybe a little depressed?
Well I guess that I could be,
Sick of "scenic detours"
With this d*mn BC!
Ok, I'll take a deep deep breathe
And try to sleep some more
Just wish that I had thought to take
A sleeping pill before!
Well there you have it folks. A Moonflwr special. I guess I really better try to go back to sleep, its already almost three o clock here. Much love and sorry for the rant, inventive though it be! LOL!0 -
Thanks, moon, im with you. Going for an echo myself on monday. 😞
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Good luck on the echoes today ladies
May your hearts be pumpin at full capacity.....or damn near.0 -
Moon, I hope it bounces back for you quickly.
Rozem, I don't know how this might differ in canada. Im treated in philly. I was 41 at dx with no family history of breast or ovarian cancer. But because of my "young " age, my BS and MO wanted the brca testing done prior to my surgery to determine my treatment. As it was negative and as I am taking tamoxifen (after having bmx, chemo, and still herceptin), oopherectomy was not recommended to me. I know we've had that discussion before - after getting second opinions from MO and gyn oncologist, im holding off at least for now. My insurance paid for the brca testing which I believe was about $4,000. There's 1 company that does the test (I think there's an anti trust suit pending over that). It wouldn't hurt to talk to your insurance about it - I think mine was approved solely on my age.0 -
Omaz posted this on another thread but I think anyone taking, or who HAS taken Herceptin in the last 5 years should read this....
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Moonflower - love the poetry special.
Fingers crossed for a good echo for you. No more detours allowed dang it! fluff - I think you are smart to pick your battles with your onc! Esp. since you just won a big one with the PET scan.
TonLee/Omaz - I read that article last night...pondering/digesting it...looking forward to discussion! Thanks Omaz!
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soltantio that was my thinking but of course it may not be true.
rozem I too have 0 history in my family for breast cancer. My BS wanted me tested after I brought to his attention that I'm Akshenazi Jewish (about 80% of all Jews are). It slightly increases our chances. I was 49 when tested. I tested negative so the ovaries stayed. My genetic counsellor didn't recommend I get it but she is "useless." Every woman I've spoke to who has had to deal with her feels the same way. None of us understand how she keeps her job.
Moon give it time. Seems a lot of gals bounce back. BTW cut poem
Tonlee thanks for the article. I have a feeling I'm still OK being so young (49-50) when taking it. But for now I'm just going to put on my seatbelts and not worry about what I can't change.
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shore1 i would like to get tested for more than just the ovary issue. The genetic counsellor said the same thing, i should be tested solely based on young age (42) I have a ton of female relatives (2 sons) so it would be prudent to know if we are carrying something. Im going to check if my hubby's private ins covers this
moon LOVE IT i have my muga today too!!!!!! i think this is the last one as Oct is the last H GOOD LUCK!
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tonlee that article is sobering, especially for those of us who had a anthracycline with our chemo. So maybe i spoke to soon about todays muga being my last. If there are signs of damage years out after treatment should we not get tested periodically? when was everyones last muga?0
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rozem - I haven't been followed anymore with echo since finishing. I am going to ask about it next week because I think their reasoning was that they were following the heart function to see if they can continue the herceptin. They are not planning to continue testing now that I am done. I started at an ejection fraction of 73% and ended at 55% or so.
Moon - Loved the poem!
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Great poem.
Thanks for the replies on the triple pos and grade 2 topic, and the wishes for my SIL.
TonLee that heart article just confirms what you have been saying all along. My EF dropped big time, low 50's. After treatment it has remained at 55. It has not bounced back up several years out. I do lots of cardio, hopefully that is strengthening me.
Good luck to the ladies in testing today!0 -
If I recall correctly, the Herceptin professional prescribing pamphlet recommends echo's going out 2 years post treatment.
The long term consequences of Herceptin are unknown. Those of us currently being treated are the stats of the future. This article makes a difference for someone like me who is in the middle of Herceptin and may need to make a judgement call about stopping should be EF drop. Thank you for sharing Omaz.
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Moon - awesome poem! Good luck to you and Rozem with your MUGAs today.
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geewhiz - sorry to hear about your SIL
moon - loved the poem! Hope you can get off the scenic tour!
My EF dropped during Herceptin, but never below the mid-50's, and last echo post Herceptin was 61. I plan to ask about subsequent echos next MO appt. I had BRCA testing done on the day of dx because I am adopted and have no access to family history. My insurance paid for it - no questions asked. It was ordered by the BS's P.A. because I was a lump candidate but a pos result would have moved it to a BMX. Ovaries are already gone. I was neg, the only happy piece of news during those first few weeks. I understand that my insurance no longer pays for BRCA testing under any circumstances - belt tightening.
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Thx, everyone for the good wishes. Rosem, good luck today, bc, good luck on Monday. It hit me a bit hard, because my last MUGA dropped only 2% and I didn't have a lot of wiggle room, I started at 59%. Also, with my pacemaker, I have always wondered if that changes anything. Well, if it goes up with the echo, I will have more Herceptin now. If not , a Herceptin break. I need Herceptin! Maybe only on my mind, bit because my moms circumstances were so close to mine, and she metzed 7years after her BMX, I feel she had her2. I comfort myself with the fact that I did chemo and she did not. Also, I am at the 6 month mark for Herceptin, had it with chemo, so if I can't go back on, I am probably ok, but I really feel like I need the year. Sorry, long post. BTW, Thx for enjoying the poem. I may have to subject you all to new, you have been warned! LOL. Better stop posting and get ready for the echo, gotta be there in 45 minutes. Much love
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The fact there were women who had no EF drop during Herceptin, but that it came within 5 years after imo should automatically put women who want it, with an EF test once a year. The Herceptin people recommend a baseline MUGA/ECHO and then be monitored with them for 24 months after the end of tx.
That tells me they were aware on some level that there is a subgroup of women who make it all the way through and then have cardiac issues later. So that part isn't news, the TIME is what is newsworthy.
Lago,
I don't think age has much to do with it. I'm younger than you and still had damage. But if you are good with not being monitored, then awesome. We each have to choose our own comfort level.
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TonLee I do see my NP in 2 weeks after my liver scan. I am going to ask her about it. I agree it would have been nice to get one when I was finished.
BTW I don't know if I mentioned this on this thread yet but today is:
❣ ❣ ❣ TWO YEARS NED ❣ ❣ ❣
I'm trying to guilt all my facebook friends to donate today and help me celebrate.
(doing the Strides Walk for ACS in Chicago) 0
