TRIPLE POSITIVE GROUP
Comments
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Pbrain, question for you. If I am already getting Herceptin (5 more to go), can Perjeta be added to it or can i get It afterwards if needed?0 -
Pbrain,
Your well-thought-out and clearly expressed explanations are a pleasure to read, and very much appreciated.
A.A.0 -
Ah thanks AA, you are too sweet. I am trained in clinical pathology and I see so many people running out to get the latest blood test that really doesn't tell you anything. I just want to save everyone time and money. In my old job I'd get phone calls from people who had found my contact through the hospital website and had done, say, hair mercury testing for fetal abnormalities and they wanted me to interpret the results. I'd tell them my interpretation was that they wasted their money and that their baby was fine. :-)
Rhonda, if you do have a recurrence, then yes, make sure they consider Perjeta. Make sure your MO knows it is very recently FDA cleared for early cancers, not just metastatic. You are a good candidate. They will give you that with the herceptin and you'll probably have to have a chemo agent like taxotere with it. But remember, this is only IF it is a recurrence. My BS told me she has very rarely seen a her2+ patient recur while on herceptin, so my fingers are crossed for you :-)
Thanks too for asking about my head. Getting the staples out yesterday hurt like a mofo. I was tearing up (ok, I was sobbing but trying not to). They can't get the skull numb, so my lidocaine cream did nothing. But they are out and I'm glad to have them gone!
Connor, get that iPad and streaming Netflix. I was one of those people that would get sleepy from the benadryl (I loved that stuff) but not enough to sleep. I was too dingy to read. So I just watched junk TV forever. I watched the entire 11 (?) seasons of Frasier and laughed my butt off. It is great being slightly stoned and watching Niles being a raging nut. :-) So sorry about the super long commute! Can you get some of your treatments more locally now that you've proven you don't have any immediate reactions to the compounds and their solvents? I'm so excited to see you blazing that trail for us! I'm betting you are not going to be too sick, but take the anti-emetic anyway!!!0 -
This is really exciting to see a new Her2 positive lineup! A year ago (I was diagnosed October 4, 2012) I would never have dreamed that I would use the word exciting to describe a chemotherapy regimen but this really goes toward that one oncologist's prediction regarding the forecast for Her2 in the next ten years (I can't remember how it was worded but something about practically nonexistent).
Rhonda, in April 2013 I had an ultrasound on my axilla that was BiRads 3 (probably benign). The radiologist said it was nothing to worry about but it was a BiRads 4 that put me where I am today (a year out from bc diagnosis) so it was definitely weighing heavily on my mind. I had another ultrasound on September 20 and whatever was tipping it towards a BiRads 3 rating in April was apparently no longer present. I bring this up mainly in support of what Pbrain said regarding biopsies and the percentages of them that are benign. My axilla wasn't biopsied but in that short of a time period there were changes in the area. Also, I used to be one who was called back for cysts. I'm sure they are much more careful with us once we've had the C word. Also, your breast has been through a lot in the last 10-12 months, i.e. surgery (lumpectomy), radiation, etc. When I was originally diagnosed they thought my tumor had a tail and was much larger. It turned out it was a blood product leftover from the biopsy. Sending positive thoughts and prayers your way!
ETA: P.S. - glad to hear your head is feeling better and ouch regarding the staple removal!0 -
oconnor2450: I am so excited that your first chemo went well!!!! We'll worth the trip:) please keep us posted on how the perjeta/Herceptin combo goes. I am supposed to start that in mid October (1 more dose of AC this Thursday and then onto the new regimen!).
By the way, have to confess, I went to the mall today and bought cute Breast Cancer T-shirt. I also bought a breast cancer bracelet from Avon. Hard not to get sucked up in "pinktober" but I felt the need to support research that we will all benefit from. I think I will wear it to chemo this week.0 -
I am sorry I did not find this thread a year ago. i have laughed and cried (and had chips, hot sauce, and beer) and feel like I have made new friends. I think pbrain wrote about newdrugs post Herceptin? I cannot have any more Herceptin (EF went to 35% after 20 weeks) but am good to go for a clinical trial or anything else.
Netflix. I strongly recommend Orange is the New Black. Watched it over a w/end when i was homebound from some chemo crap.
An introduction. Susan Golden. Live in Roswell NM. Transplant from West Texas via Southern California Baltimore North Texas beginning in Iowa. Been a nurse since the dead sea was just sick. Pediatrics, womens health, psych. Taught in Roswell for 9 years, moved to nursing program director for 2 years, now Dean of Health. Moved to Roswell for now ex-husband. He walked out the day I had my port placed after $%$%$^&&#%^& from the 2nd year we were married. I am glad that cancer is gone. He was morbidely obese. Had a gastric bypass. Lost 186 pounds. Had a penile implant and is now prancing through the southwest. Beware of tall skeletal male.
I used to like October. Bought lots of breast cancer pink shirts, pens, paper, caps, socks, and panties. Now i want breast cancer pink off my ice cream and potatos. I am somewhat grippy.
Thank you for welcoming me.0 -
Hi Susan, sorry u'r here, but happy u'r a nurse. And when the dead sea was sick to to funny .Even being a nurse these ladies are a super sourxe of info and nice too.
I'm sorry I missed a couple of days they go by so quickly when u'r having fun sitting on the toilet most of that time--so I've been a little off that's all. I have a lot to catch up on U guys talk a lot, so I'll try to catch up.0 -
<<Had a penile implant and is now prancing through the southwest. Beware of tall skeletal male.>>
LOL! We just moved to the southwest (from Southern California to Arizona). I'll keep an eye out!0 -
Oconnor2450,
Question...
So you haven't had surgery yet? Unless I misunderstood perjeta was approved for neo adjuvant therapy. Did they hold you up waiting for approval?0 -
Good Morning.
I just realized Susan said she lived in the infamous Roswell, NM. Holy crap.0 -
LOL! Feeling better Camille?
Can't seem to post to the forum from my IPad since the BC.org update. Just when I become accustomed to my tech... someone messes around!0 -
Hi I Ashla, I had a mastectomy (left side) in Dec 2010. The surgery showed multi focal DCIS with 2mm of invasion. It was recommended that I needed no further tmt. So, I went on my way with my new boob and carried on as if I broke my ankle or something, in other words! I was in a bit of denial it was in fact cancer AND I felt very suspicious I was getting off so easily, no chemo, no rads... Lo and behold in May of this year after some strenuous-exercise! I felt very sore on the mx side. I dug around and felt a tiny pea thing that set off alarm bells. I waited a bit to see if it would go away. In June I saw the the surgeon, did a biopsy/ lumpectomy and confirmed it was a .6mm +++ . I couldn't believe it and neither could the surgeon...but that's another story. Now I was definitely heading for chemo & rads. It was breast tissue, so the speculation was because it was so near the 2mm inv that it was likely present microscopically at the mx. I went to Chicago ( I live in Maine, beautiful but nowheresville medically) to a HER specialist at RUSH that my online friend from this board hooked me up with! Shout out to lago!!!! DR in Chicago gave me the new protocol of herc, perjeta & Abraxane. So far. So good.... So glad the first one is over...
I'm sorry that's such a long winded explanation.0 -
thx oconnor,
Fascinating . Things have a way of unfolding that you can only understand with the benefit of time. There are no coincidences .
You go girl!0 -
Camillegal. Yes Roswell. Moved here in late '99 for the %#%$ ex-husband. A very small town that is supported during the Alien Convention (really-come visit the first week in July), bits of industry, and bits of the university. Not even a Dillards.0 -
Well 2 more taxol treatments! Then surgery/radiation&finish herceptin! Getting hysterectomy& homorone pills...Anyone ask there doctors to get the new drug before surgery? My doc seems like they dont want to give it! Im calling up CEO Monday & seeing what is going on! For 12 weeks before surgery says it does good! But that perjeta only helps with the her2 not the estrogen part!0 -
goutlaw, sine u only have 2 more taxol treatment to go, i dont think your insurance would approve for this new drug. i have 2 more TCH to go, my onc told me, the insurance will not approv of it. unless if i only had one treatment of TCH then its easier for him to switch to new drug.0 -
Hi Susan, welcome, glad you enjoy the group here. My DH spent a couple of months on assignment in Roswell around 30 years ago, and it doesn't sound like it has changed much since then. Glad you are rid of an obnoxious companion as your journey continues....0
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Hi Susan!
I missed your hysterical post this am. I'm in tech meltdown at the moment gotta read posts on IPad and post to the forum on this teeny little iphone.
You are well rid of him but .... Beware....a lot of them seem to find their way home!0 -
Susan. Hilarious! Sad youre here but glad you found us. And just remember that skinny guy is still a fat ahole inside.
Much love to all.0 -
Does anyone know if it is safe for those of us who have completed chemo within the past year and about to undergo radiation can safely get a flu vaccine, especially the more powerful one designed for seniors? Will call my MO tomorrow but would nice to know sooner.0 -
Well, the Bra Crawl Indy was a big success. Lots of fun. I believe we had our pictures taken more than anyone else. There were 8 of us. three came as the Quack Pack with a duck dynasty theme bra and duck calls, my DH was the Birthday boy with a fully decorated birthday bra, our friends who own a dog hotel had the the dog themed bra with something about barking mad about BC, my son the Financial Analyst had the counting on a Cure Bra, and my friend and I had fancy bras with a real estate focus with Hot Homes for the Hot "Girls." Money went to the V Foundation and ACS.
Trying to post a picture but having no luck. Makes me crazy.0 -
o that stinks!0 -
honeybair - ask to have a CBC to check your white count, if it is OK then the flu shot is most likely ok too. On some of the current chemo threads the onc are telling them to get flu shots - in the middle of chemo, or just before.0 -
my onc told me to get my flu shot before I started my chemo and after for the next year. I got one this year after my surgeries.
Fluff that sounds like a real fun time!
I spent my weekend putting up my Halloween decorations. My DH was home to dig them out of the basement and haul them upstairs. I realize I have 4 huge containers LOL. Last 2 years I didnt go all out. B ut I am glad I did it.
Much love to all.0 -
Susan, welcome! You crack me up! I hope the skeletal, penis-enhanced ex is having the time of his life (not!) What a dickweed.
Q--I bought the Florastor for building up my intestinal flora (and fauna ;-) ) after it was wiped out by chemo and the label has a black box warning that says not to use with a central line. No biggie, but then it says don't use with a port-a-cath. There is the potential for colonization. Any thoughts? I'm going to ask about it at Herceptin this Tuesday.
I want happy poops!
Oh, and I've never had a flu shot in my life until last Fall. My MO told me to get one before I started chemo, so since they are free at Roche, I wandered over and got one. I agree with Special K, as long as your white cell count is normal, go for it.0 -
A question or two (or more) regarding estrogen inhibitors. If I recall correctly, SpecialK is on Femara but I know several here are on Arimidex.
My new oncologist said he would write the prescription for whichever one I preferred. I saw the discussion regarding some weight loss on Arimidex (Pbrain and ashla) so I went in leaning toward Arimidex.
First question: those of you who are on Arimidex - are you on the name brand or the generic?
Secondly, did you choose Arimidex over Femara or did your MO make the choice for you?
I was just reading a study regarding one over the other. Here's the link:
Letrozole is Superior to Anastrozole in Suppressing Breast Cancer Tissue and Plasma Estrogen Levels
http://clincancerres.aacrjournals.org/content/14/19/6330.long
Did any of you take this study into consideration when you started on whatever it is you're taking?
I have the prescription for Arimidex or its generic equivalent but I find myself being very apprehensive about this - mainly because there's a choice and choices can drive OCD people crazy.
Thanks in advance for any input on this!0 -
LeeA - I have been on both Femara and Arimidex. Onc chose Femara for superior perfomance so I did that first (Mylan brand) and had trouble with a trigger thumb after 6 months, so switched to Arimidex. After a year had numerous triggers - particularly left ankle, knee pain severe enough for a cortisone injection, and a bunch of joint aches, so decided I would switch back to Femara since the onc favors it anyway. When I filled it again I received Teva brand - much better - far fewer SEs, at least so far.0 -
LeeA I did not take that study into consideration. Mostly cause I didnt know about it. However reading it I just dont get why the amounts were different for each drug. Perhaps it was based on what a normal dosage was. But that would be my question. Perhaps Pbrain could clarify.
Anyway, I let my MO pick the one to start with. I trusted him for all the other stuff I went through so I went with his recommendation. I figured he had the experience to pick the one that would work best for me. He knew I had a reaction to chemo, to Herceptin, had to get two transfusions, was hospitalized with renal failure. I figured he took all that into consideration when he suggested Anastrozole. Sometimes you gotta go with the person with the most experience.
Just my 2cents worth. LOL
Much love.0 -
hi all!
I'm back from Dublin; had a great week with my family. Lots of laughs, and a few tears as well....went every day to visit my grandmother who's in respite care, the rest if the time my mum looks after her. She has Alzheimer's, so most of the time she doesn't recognize us, but she's really happy and content. She makes me smile every time I see her!! Caught a glimpse if the granny I knew - she told me my hair looked terrible short, and why didn't I keep it long???! If only she knew.....
Trying to catch up on all the posts I've missed, so can't comment on anything at the moment. Will try and get up to date today. Have the MRI on my knee this afternoon, so should be able to read some while I'm waiting around!
Nicky0 -
moon - the amounts of drug used for each in the study are the standard amounts prescribed - it just happens that letrozole is standardly dosed at 2.5mg and anastrazole at 1mg. They are not the same drug so it is not a case of a larger dose of letrozole vs a smaller dose of anastrazole - they are both at the therapeutic dose.0
