When do most recurrences for HER2 happen
Comments
-
Weety -- that makes sense. My Onc says she counts the years from time of completing chemo, so for me that is October 2009... which puts me still in year two.
0 -
OK - I'll have to "celebrate" my 3-year mark again at the end of July (end of chemo.) Can I have brownies again?
0 -
LOL
0 -
CoolBreeze- I'm so sorry to read your news. I'm praying you get NED really soon.
0 -
Here you go suemed
Instructions on how to eat: Freeze brownies. Take out desired serving and microwave for 20+ seconds. Do not totally cook. The outside should be hot but the inside still cold. Best way to eat a fudge brownie. No I was not stoned when I discovered this.
0 -
LOL Lago on "no I was not stoned"...
0 -
Thanks, Lago - Arizona recently passed medical marjuana, so I will file this incredible-sounding recipe in case of emergency
. Lilah - Puppy in your avatar is adorable!
0 -
Aw thanks Sue! She is a manipulative little cur but I adore her.
0 -
Hi ladies I was first diagnose about a yr, last Oct at that time I was told + for hormones only, I had 4x ac and 4 x taxotere, masectomy rads,, ovaries removed and then decided to get second opinion. They re tested all my tissue only to find out that I am her2+ now they will start me on herceptin, I just want to know if alone it will work I finished chemo in April... After chemo I had 8 nodes out 21 I guess I would have been clean if herceptin was given from beginning. But I'm praying it does help I can't find much about this.... Thanks
0 -
Coni -- I am not sure what the answer is. The Herceptin is usually started at same time as Taxotere.... but I can only think that your doctors feel it can work alone at this point (since you DID have the Taxotere and the AC already). Were you BRACA positive? Just wondering, since you had ovaries removed. What was the reason your doctors decided to retest the original tissue samples?
0 -
Yes I am brca 2 + that's why I took my ovaries I'm 32 its really hard going through menopause at this age but I wanted to do everything possible.
0 -
I have heard that Herceptin can work after Chemo as well............
0 -
Of course Herceptin has worked after chemo or they wouldn't be giving it to you. Just remember that no treatment is a guarantee even if you had it with chemo . Not all HER2+ spreads either. For all we know some of us don't even need Herceptin. Just most of us do.
0 -
Thanks guys! This whole thing really sucks! But I guess herceptin here I come. Does the port hurt I know they told me they just freeze the part where they put it...u think I would be use to pain by now but nope.... I need to vent out I'm just in a really bad mood all weekend I don't know if is body just is sick of all this or the letrozol. But so sick of ppl telling me oh don't worry u will be fine...it's all in the mind! Or don't read to much cause then it get in ur head.....grrrrr I'm just so mad!! Everything gets me mad now! I wanna punch something..yesterday I was cleaning the basement and it was one of those Days where everything went wrong I ended up just throwing things around lol
0 -
Coni,
We are in the same situation - I finished ACT in March, had a BMX in April. In May, they tested the residual tumor and (surprise, surprise), it was Her2+. Was my oncologist's face red! I was SO pissed! I started Herceptin in late May. I have the same concerns as you, but just remember, they used to give Herceptin after chemo and it still had a high effectiveness rate. It's still a great drug and will definitely improve your prognosis.
0 -
Sweetbean, Oh wow I guess this happens a lot my concern is I finished chemo April we are now Oct and I'll start it soon I'm hoping.. Well I'm praying it does help... I don't know about u but I'm so angry, trying everything and they screw up on this important detail!!!!
0 -
Hang in there Coni. BC sucks and the whole experience is an emotional roller coaster ride. I like what Lago said: they wouldn't give you Herceptin now unless they thought it would help. Assume it will help! The port shouldn't hurt. Mine was occasionally uncomfortable but I think it was installed near a nerve or something. It's definitely better to have the port! You didn't get one for the chemo? Anyway, the first infusion takes a longer time (if I remember right) -- they give it to you at a slower drip rate the first time. As I recall, once I finished the Taxol it was not bad doing the H every three weeks. Was pretty quick (like 1 1/2 hours on average) and the side effects were minimal (my joints got a little achy and my nose a little crusty). Most women tolerate H very well.
And as for being in a bad mood -- feel it! Nothing worse than having to be pleasant when you're grumpy.
0 -
My Herceptin only infusions were only 1/2 hour. They do the first one slowly to be sure you don't have a reaction. I don't think I had any real SE from Herceptin except my white counts were a little low. I finished my last Herceptin Sept 16th and I don't see any changes yet although my legs might be less stiff. It's hard to tell right now because I had surgery that included fat grafting on Thursday and the donor sites were my thighs so I'm a bit sore there.
Port was a little uncomfortable the first few months but you'll get used to it. I don't even notice mine now. Port surgery was pretty easy. You'll love the port.
0 -
Coni, I was PISSED. I still am. It's a major screwup and it's not like we are ordering drapes here. We are dealing with cancer and I need my oncologist to be WAAAAY more on top of it than that. I am sure that it will still help. Are you doing any complementary therapies? I'm doing mistletoe, low-dose neltrexone, and Avemar.
0 -
Thanks guys!!
Lilah I had piccline because in Canada they only give u port if u r her2 and since at first they though I was neg...piccline for me funny thing I left it after , mastectomy because I though incase I need more chemo...or incase my pathology report came back with her2+ (someone on my chemo thread went through that first neg and then +) so decided to keep it as soon as pathology came back and no more chemo needed picc came out ...
lago yes they said first 2hrs and then 30min every 3wks as long as I don't loose my hair not bad...
Sweetbean- the pathologist didn't miss it once they did twice!!!! If it was not for me getting a second opinion and the doctor saying he was not happy with the her2 it was inconclusive to retest I probably wouldn't have known ... After surgery I told my onc that someone had tested neg or heft and after surgery it was + he said that it was strange if first time was neg it usually stays that way...no he told me that cancer cells r like sibling they don't all look the same and as they spread they ay change??!! I know we are ordering drapes that if they. Screw up just change and move on!
I really dont wanna be angry or in bad mood but I honestly can't help it0 -
Lago - yeah I think you're right now that I think of it. How quickly we forget! I think they always started me on saline drip first, then the Herceptin... so it usually took about 45 mins to an hour... but still it's quick compared with chemo! And easy.
0 -
Elaine,
So sorry that you had a recurrence!
I assume you didn't have Herceptin since you were dx 12 yrs ago?
Any lymph nodes involved?
Can I also ask what type of chemo and or radiation you had?
Surgery?
Also, were you having frequent checkups or bloodwork, or did the docs just figure you were fine?
Sorry for so many questions!!! It is curious why some women recur and some don't.
tuckertwo
0 -
Coni, I've heard that sometimes the cancer isn't all the same - one part can be HER2- and another HER2+. It isn't common, but it happens sometimes.
Some of the initial studies used Herceptin after chemo. It is effective - not quite as effective as starting it along with chemo but you get most of the benefit.
0 -
thanks Bluedasher - maybe thats what happened to me some neg and some + its weird, but the whole thing sucks anyhow..
I get my port next tuesday..does it hurt? do they put you under? i think my doctor said only general anesthisia is given i hate needles, i hope they can give me something to relax me! I had a piccline for my chemo so all they need to do in connect me to the piccline no needles...how does this work? do you still get pocked with a needle?
0 -
Coni A little less than 25% of my tumor was DCIS. They said the invasive part was 5.5cm but if you included the DCIS then my tumor was 6.5cm. This is why they don't relay on the biopsy and do all the tests again after surgery. I know they tested my HER2 again… but they can miss. This is why they should test several sample areas.
Port was easy for me. I was put out with twilight. By the time the port surgeon came back to see me in recovery I was all dressed and sitting in a chair. I think he was a little surprised that I pretty much looked like I just walked in. I would say I was a little groggy/tired from the twilight so driving wouldn't be recommended but I was just fine.
0 -
ohhh bring on the drugs to put me under...or atleast to relax me! im putting emal creme all over my chest
0 -
Coni I just read some women are using that Emla cream down south because of painful intercourse. Hmmm not so sure feeling nothing is the way to go either but they seem to be cool with that.
Personally I have found the Emla cream pretty useless for me. Sometimes I used it when they accessed my port. I found when my chemo nurse accessed I felt nothing, other nurses I felt it.
0 -
hmmmmm weird i always use blood work, and iv always worked...even for tattos for rads! lol im a big wimp!! im lethering my chest for the port lol and asking for drugs to atleast relax me a bit lol
0 -
Well, 7 months post treatment and crossing my fingers, toes, eyes, and anything else! lol
0 -
Thank u, so much for your encouraging news! i was just diagnosed last week and just heard yesterday i was HER2 pos. It scared me to death! would like to hear more of your story! God Bless!
0
