TRIPLE POSITIVE GROUP
Comments
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great article Ashla!!!0 -
Ashla! Wow! I was wondering where they were with this. Great news.
Chick, when they photographed my poor boobs for mapping, I told them I felt like it was time for my cover girl shot ;-)0 -
Ashla, great article! It's a huge comfort to read about advances that are being made!
ChickaD, hope you fly through rads with no se's!
Nicky0 -
OK sorry I've been MIA, I was on a trip an old fashioned one--high as a kit--Not really that high. Anyway I'll try to write what I remember.
And good results--happy about that
And Nicky how did u travel with a knee like that and someone else I thing knees are so painful to have cuz of walking.
And all of u still amaze me the conversations u have useing the alphabet, altho I know every letter in the alphabet I don't have an idea what u'r talking about, that's why I have opinions, not facts.
Chicky I'm glad u enjoyed u'rself so--and I signed up also.
Shasha u will really be the biggest help to u'r sister than anyone, glad she has u.
Ashla again Kudos for all u'r info.
And Moon I think u were talking about u'r knee and I wish u had that done sooner too. It doesn't seem to get better.
Hi SpecialK, as usual u give great advice--oh that could have gone with diffent words so badly--I know how disgusting I am.
Well I want to welcome anyone I missed as newbies, u will love it here not one question goes unanswered and everyone cares so much--a good group of women. but I don't answer questions I just remark.
Well I go for a new specialist Monday and u all know how I hate Drs. at this point---I've been kind of laid up for over a week but I'll get there. with some energy this time, just to have him drain it from me. LOL
I know Lago is super busy now expecially this month, she gives a lot of herself for this, I give her a lot of credit.
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nice to see you back Camille!! Will he thinking of you Monday, I hope it goes well. Is this to do with your moving internal parts?😉
Yes my knee was sore - in fact when I got the results of the MRI I looked at my DH and said "told you it was sore!!!!"
Story is it needs an operation, orthopedic is contacting onco to see if there's any restrictions. Hopefully it'll all get sorted soon, but first I'm going back to Dublin with the kids and DH for the mid term break! I'll take it easy with my mum, then come back and get my knee sorted. That's the plan anyhow!
Nicky0 -
You ladies are just too funny --- LOVE IT !!!!
Chemo/RadIation Update.....
So Radiation was long yesterday.... what weird positions they put you in... I have 9 new tattoos..... woohoo.... but nothing exciting... just dots, but they hurt pretty good lol. I go back next week for chemo and the next day I start radiation for 5-7 weeks depending on how my skin holds up... they gave me magic lotion to smear on everyday to help the skin survive.
Today I had another heart MUGA scan so hopefully my numbers will be at least 50% or that will be bad....
Also saw neurology for my neuropathy in my hands and feet today.... they are changing my medication and adding some new ones to try and make sure it does not remain a permanent side effect for me.
Also apparently I now have lymphadema in my legs and arms... I will see a specialist for that soon too... gee like I did not have enough doctor appts already... Can't wait to wear those sexy compression stockings.... I'm a mess....LOL0 -
Chick,
I didn't know they tatoo you for rads? permanently ? May I ask you why radiation with a mastectomy and clear nodes? I was under the impression if you had a lumpectomy radiation was mandatory to the breast, but with a mastectomy for early stage it was not. I would like to learn if you were told differently. I see Oncologist tomorrow for first appt post surgery.
I do know a little about LE specialized therapist, they are very good at teaching you massages/exercises that help remove the excess fluid. I've only personally had one, 3 weeks post first surgery and it helped with the surgery swelling and movement, but I saw another lady arrive with a marked increase in arm size and I saw the improvement afterwards. Im looking forward to returning.
I wish you well,
Vivian0 -
Hi Ladies,
Biopsy results are in and it is Benign. Whew, thank goodness! I had an ultrasound guided vacuum biopsy last Tuesday and the doctor vacuumed it all up. I'm hoping anyone else going thru the dreaded test and wait period will get good news along with a sigh of relief. Thanks for all the great information and support. You ladies ROCK!0 -
Oh ChickaD, I am sorry you feel like you are such a mess
Hopefully you can get some of these issues straightened out. They do have some pretty cool lymphadema sleeves out there, not sure about the stockings. But no matter haw cool they look, no one really wants to wear them.
Rhonda, great news!!!0 -
Rhonda, Oh Congrats!!! B9 is FINE!
CHICAD, girl you are a mess!!! Now cut it out and get better. You are on one of those Scenic Detours Ive been on and some I havent and never want to go on. I want you to get off that train and get on the EXPRESS train!!!! And I can see you playing connect the DOTS when you are sitting there waiting! LOL!!! I hope your EF remains above 50 for you. . CAMI, we sure missed your fun inputs but it looks like you had your own fun.... LOL! Yeah, ive had bad knees too long. Its in the middle if the severe category. Bone on bone nothing in between. If you are walking next to me, you can here the clicking. If I turn you can hear the grinding. I am glad to be partly deaf so I dint hear it all the time. LOL Nicky sorry you are having problems with your knees that is not fun. But I hope you have fun in Ireland. And, yes, SpecialK does give, um, good advice.... LOL Pbrain, you could DO a cover shot! LOL Ashla, wow, thst is good news. Thanks for posting the article.
Today I had to get a another magnesium infusion. O joy. But on the slo mag I didnt get the big D but once this week. So YAY. Sometimes its just the small things.0 -
Rhonda - Yay!!!0 -
Rhonda Great news.
Nicky my app;t has a little to do with that but other things too. UGH
Chicke tats I remember asking for my tats to have some personality like little lines around it like the sun and various other things, and he said he wasn't allowed to do that GRRR I want some cute things.
Oh I think I told u gals we're getting AT&T tom. changing from Comcast--Comcast is shmucky aroun here, well my DD said to ME make sure u'r room is clean, cuz the cable guy is coming tomorrow--Excuse me I'm going to make sure it's clean---to impress a cable guy--like I really care what he thinks of me or my room, and like I'm a kid-h I told her if it bothers u u clean it--she did LOL cuz SHE SAID she wasn't thinking. How old am I 8? I know the brat meant it tho. Clean right me??? Ha0 -
Greetings from beautiful Winston-Salem. Had my injection for the AE37 vaccine trial that Special K and I are participating in. Now my thigh is just itching like crazy and I have two big angry red welts. Was talking with the program manager regarding updates, etc., and it seems like results are good, particularly with people whose tumors are lower expressing her2 positive.
http://www.abstracts2view.com/sabcs11/viewp.php?nu=P1-13-01
Rhonda-good news. My second biopsy was ultrasound assisted vacuum. I ended up with the worst hematoma. Glad things went ok for you.0 -
fluff - I wonder if they have something like that abstract for the GP2 peptide arm of our trial? I know the AE37 has gotten more attention because the peptide is "promiscuous" (I love that!) and benefits a broader spectrum of people, and they have been recruiting lower expressing (technically Her2- from a Herceptin perspective) Her2 patients. Where did you get this info?0 -
holy long thread batman! I get busy with rads starting, kids back in school and other random life stuff and look what all you guys have done. Just spent the last two hours catching up. I haven't laughed that hard, thought that much, felt such joy or been that scared in such a short time ever!
(So - I made a post it of thoughts as I read through - but now I can't remember everything and I'm on my ipad so I can't go back and re-read. Please forgive me if all these don't make sense).
OConnor - yay for new treatments. We'll all be watching with a great deal of interest. So excited to know someone who's getting the latest and greatest!
PBrain / AA - I totally would have volunteered for a Herceptin only trial. Actually argued at length with my MO about this before I started treatment.
Hutchins - I'm young, too (38 last month)! It is scary to look at your kids and wonder if you'll be there for them. But - we're the lucky ones. So many treatments out there - and I've met many survivors who were diagnosed at our age and are still here!!! Come join us on the 30s board.
Girlstrong - I had a mastectomy and radiation. (That was your ?, right) close margins or positive nodes can land you in radiation land.
PBrain - so glad your head is better.
Nicky - glad you were able to figure out the problem. Hope all goes well with your travels and that your knee behaves itself until you get it fixed.
Hugs to you all. Must get some sleep so I can get up and drive through all this crazy rain to rads in the morning.0 -
Rhonda, happy days!! What an enormous relief!0 -
camillegal, I hope you're doing okay. Best wishes for the upcoming procedure.0 -
Vivian......rads because my tumors were close to my chest wall....and some radiation depts use markers and some permanently tattoo......just little dots that look like freckles.0 -
Special K, I just found it in a search. The nurse manager of the program here didn't have a lot of updated info, but honestly we were having so much fun catching up I forgot to ask. last time down, she did say it was moving into phase 3, and that Genentech was the owner of it now. She said that in phase 3, they will be giving it while patients are getting herceptin, not after, and that she wasnt sure Wake Forest would be doing the Phase 3 trial. I'll assemble my questions for when I go back in three weeks for bloodwork.
Maybe you can et some info from your folks!0 -
SpecialK, is that not pretty much what our study is? I was just looking at it again, and then the original info from the study folks. it looks almost identical, but I definitely do not have a medical degree. Let me know if I am not putting accurate info up.0 -
I was HLA negative so I would be in the AE37 arm, not the GP2. We're you positive?0 -
ok, found this from January.
Phase II trial of GP2 and AE37
http://www2.mdanderson.org/depts/oncolog/articles/13/1-jan/1-13-1.html
The GP2 vaccine works in much the same way as the E75 vaccine. Like E75, the GP2 peptide is 9 amino acids long and binds to MHC class I molecules to stimulate CD8-positive T cells; thus, the vaccine works only in patients who are positive for HLA-A2 or HLA-A3. In contrast, the AE37 peptide, which is longer than the E75 and GP2 peptides, binds to MHC class II molecules and stimulates CD4-positive T cells, thereby eliciting a more robust immune response. Although MHC class II peptides can be HLA-restricted, AE37 is a promiscuous peptide, meaning that blood cells of almost any HLA type can present it. In addition, the AE37 peptide is paired with the Ii-Key protein, which enhances the presentation of the peptide to the immune system.
Both the GP2 and AE37 vaccines are being investigated in an ongoing phase II trial to determine whether the individual vaccines can prevent the recurrence of node-positive or high-risk node-negative breast cancer. Patients are sorted into groups depending on their HLA status and then randomly assigned to receive the appropriate vaccine plus GM-CSF or GM-CSF alone (as the control).
The AE37 trial’s planned interim analysis revealed that at a median of 22 months, the recurrence rate in the vaccinated patients was 10.3%, whereas the recurrence rate in the control group receiving only GM-CSF was 18.0%. The difference represents a 43% reduction in recurrence rate.
“These data are encouraging,” Dr. Mittendorf said. “Obviously, we need longer follow-up, and we need to finish accrual in the trial, but the data suggest that it is reasonable to look forward to investigating the AE37 vaccine in a phase III setting.”
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fluff - yes, I am in the GP2 arm because I am A2+, that was why I asked. The info on that link seemed to be more about the AE37 arm, which is the only one of the two that is beneficial for lower expressors of Her2. Nobody that was low expressing and A2+ got into the trial when they expanded phase II.0 -
Thanks for the info fluff and SpecialK.0 -
Lee Thank you. I have nothing to add cuz I don't know what the hells is going on. Thank God.0
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hi everyone! Quiet here lately. Do hope that it means those of you still in treatment are doing so well that you don't need guidance!
Good news for PBrain who works for them and hopefully for all of us. Roche the drug maker for herceptin, kadycyk & perjeta hiring lots of people. Hope there are lots more weapons in their teasing pipeline!
http://mobile.reuters.com/article/idUSL6N0I404U20131014?irpc=9320 -
Hi all: Playing catch up again on all the posts. Looks like some more good news. Did anyone hear about the silly link to peanut butter. Many of us grew up on peanut butter so go figure.0 -
Hi Ashla!
I agree - very quiet here at the moment! Hoping that that means everyone is doing well 😊
Me and Portia; we're off to the hospital in the morning for a dose of herceptin.....
Arlene,
If only the answer was as simple as peanut butter...
Nicky0 -
Camille,
How did it go today? I've been thinking of you!0 -
Hi everyone! Long time reader, first time poster. I was diagnosed as triple positive June 26th 2012. I completed TCH in December & finished my year of herceptin. What I am now looking for are FACTS about the triple positive diagnosis. I am sorry if they are here in a very simple place to find but my stupid chemo brain wont let me find anything! Any help would be much appreciated.
PS....Also just wanted to say a big thank you to all who post here! I am sure there are many of us "silent followers" who much appreciate you all!0
