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Old 02-23-2010, 04:20 PM   #1
v-ness
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percentage of those who respond to Herceptin

hi -

on a cross-country plane trip recently i read the book HER2. chalk it up to chemo brain and too many hours on a plane, but i didn't ever quite grasp what PERCENTAGE of women with HER2+ breast cancer respond to herceptin. when i started Herceptin i guess i assumed the response rate would be, i don't know, something like 80% since it is hailed as a miracle drug. i imagine that i picked that nice number out in my mind because that's what i wanted to think. my oncologist must think i am an ingrate because i told her today i "wasn't that impressed" with numbers i read in HER2. she was surprised and drew me a graph of how drugs usually affect cancer and then how dramatically Herceptin affected by comparison. she told me about ASCO and how when the results were shown there was a collective intake of breath by 18,000 people.

but i am totally ignorant! i only got introduced to breast cancer in august! before then i didn't even know there were different kinds of breast cancer, nevermind HER2. so to me a "Miracle Drug" would be one that saved like - my magic number - 80% of lives. she told me today that it works 50% of the time. again, i hate to sound like an ingrate - i mean of course 50% is better than what preceded it! i'm sure it's staggering to an oncologist. but to a woman who had it in her chest, i'd like better than 50/50 odds it will work. again, i want to stress that i am extremely grateful for it because when i first looked up HER2+ before i got to see an oncologist i had a panic attack complete with hyperventilating. then i heard about Herceptin and was hugely relieved thinking, without question, this will work!

so today i sat in the infusion lounge thinking, for the first time (i know, i am an idiot), wow there's a 50% chance this is not working for me and that was a scary thought. i have to tell myself "hey dumbass, remember when you were hyperventilating about 'poor prognosis'? this is a hell of a lot better!" i know, some of you are probably thinking 'how could you be so naive?' but i heard Miracle Drug and thought higher than 50/50. i am laughing at myself even now. when i got diagnosed i immediately thought Cancer = Death because my bob died 10 wks after diagnoses. i have SUCH a better prognosis being stage 1 breast cancer and with Herceptin, i have no right to feel scared over a 50% number.

if that number is even correct... is it?

valerie
__________________
8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
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Old 02-23-2010, 04:53 PM   #2
Patty F
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Re: percentage of those who respond to Herceptin

Valerie
I like you thought the percentage was much higher than 50%. Maybe I need to read the same book you have.
Does anyone here know the percentage?
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10/15/07: Diagnosed at age 46 lymph node removal (2)
ER/PR - Her2 +++
11/07: Port Installed
11/07 - 1/08: AC
1/30/08: Right Mast Stage lllC
2/28/08: Start Taxol and Herceptin weekly.
5/15/08: Finished Taxol
8/12/08: Finished 33 Rads
1/29/09: Finished Herceptin
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Old 02-23-2010, 05:42 PM   #3
Becky
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Re: percentage of those who respond to Herceptin

In the initial adjuvant Herceptin trials, Herceptin improved 2 year survival results by 50% (meaning that half the women who would have recurred didn't) but the 5 year results are a third which holds up for metastatic disease too (in general). We will see what the "over time" results really are because I think that like Tamoxifen, over time things wane.

So, for now, 5 yr recurrence free survival is 33%
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 02-23-2010, 06:00 PM   #4
whatz
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Re: percentage of those who respond to Herceptin

Wow. I too was hoping chances for no-recurrence in 5yrs was better than 30% (1 out of 3). But then again, we are all just guaranteed here and now. Everyday we drive our car or ride with somebody our time on earth may be up. So...getting caught up in the number game is not something I want to do :-) after all, my time is still in gods hands. I have to keep reminding myself that.
__________________
4/09 suspicious lump in left breast
5/09 biopsi lead to diagnosis ER/PR -
Her2+.Grade 3,full masectomy left breast,sentinel nodes clear,Stage 1
6/09 Adriamycin + Cytoxan 4 treatments (every 3 weeks) followed by Taxol + Herceptin, 1 treatment weekly for 12 weeks, followed by Herceptin for 40 weeks
MRI Brain 4/10 clear
CT Body 4/10 clear
PET Body 2/11 clear
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Old 02-23-2010, 06:21 PM   #5
v-ness
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Re: percentage of those who respond to Herceptin

i am mystified then by the Oncotype DX. my score was 56 = 33% chance of recurrence. chemo, herceptin and tamoxifen were supposed to knock that down to 12% - i could have sworn that was a 10 yr figure. so.... the 88% chance of no recurrence i was so grateful for was just meaningless? i am so confused and feeling negative about being positive.

i already drove a car into a telephone pole once and went headfirst through the windshield so i used up that favor from 'god'.

valerie
__________________
8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
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Old 02-23-2010, 06:33 PM   #6
Laurel
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Re: percentage of those who respond to Herceptin

Yeah, Valerie, I think we all get a little anxious over the stats at times. I refuse to hang on them, either way. What does it hurt to be an optimist? Nothing. I once had a friend who chose to see the glass half full...ALL THE TIME! Irritated the heck out of me, because I came from a long line of pessimists! When my friend got cervical cancer, she didn't despair. No, she believed she would survive to become a mother and she did. Today over a dozen years later she is the mother of two soon to be teenagers. She plans on living to be an old woman. Why not?

I watched her and decided she was on to something. What was going to be was going to be. I have no real control over my life, really. I do have control over how I deal with the adversities of life. I can choose to see the glass half full.

I do not know whether Herceptin will stay the cancer beast from my life indefinitely. I choose to believe it will. It's as simple as that. If I, God forbid, should recur I'll deal with that then. For now what does it hurt to believe in the best? Is that naive? Don't know. Don't care either. It lets me sleep at night and move forward with my life in the morning.

Of course, I wouldn't mind that 80% either......
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Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 02-23-2010, 06:55 PM   #7
chrisy
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Re: percentage of those who respond to Herceptin

I don't have the stats in my mind (or much else for that matter), but I think there is some misinterpretation here.

50% reduction in recurrence risk at 2 years doesn't mean there is only 50% chance you won't have a recurrence. It means that whatever that stat WAS (and it would vary by stage i.e. stage 1 would have lower risk than stage III)), that risk is cut in half by Herceptin.

So say a person's 2 year recurrence risk was 20%, with Herceptin that would now be only 10%. Or if it WAS 70%, it would now be only 35%.

Having said that, remember that nobody is a statistic, we are all individuals!
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Chris in Scotts Valley
June 2002 extensive hi grade DCIS (pre-cancer-stage 0, clean sentinal node) Mastectomy/implant - no chemo, rads. "cured?"
9/2004 Diag: Stage IV extensive liver mets (!) ER/PR- Her2+++
10/04-3/05 Weekly Taxol/Carboplatin/Herceptin , complete response!
04/05 - 4/07 Herception every 3 wks, Continue NED
04/07 - recurrence to liver - 2 spots, starting tykerb/avastin trial
06/07 8/07 10/07 Scans show stable, continue on Tykerb/Avastin
01/08 Progression in liver
02/08 Begin (TDM1) trial
08/08 NED! It's Working! Continue on TDM1
02/09 Continue NED
02/10 Continue NED. 5/10 9/10 Scans NED 10/10 Scans NED
12/10 Scans not clear....4/11 Scans suggest progression 6/11 progression confirmed in liver
07/11 - 11/11 Herceptin/Xeloda -not working:(
12/11 Begin MM302 Phase I trial - bust:(
03/12 3rd times the charm? AKT trial

5/12 Scan shows reduction! 7/12 More reduction!!!!
8/12 Whoops...progression...trying for Perjeta/Herceptin (plus some more nasty chemo!)
9/12 Start Perjeta/Herceptin, chemo on hold due to infection/wound in leg, added on cycle 2 &3
11/12 Poops! progression in liver, Stop Perjeta/Taxo/Herc
11/12 Navelbine/Herce[ptin - try for a 3 cycles, no go.
2/13 Gemzar/Carbo/Herceptin - no go.
3/13 TACE procedure
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Old 02-23-2010, 09:03 PM   #8
vlcarr
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Re: percentage of those who respond to Herceptin

I asked my onc before I started chemo what my odds were of recurrence. She said 15 - 20%. She said if I only had surgery it would be 55 - 90%.

So, I will choose to look at it that way--I have an 80% chance it will not recur. One of my dear friends is a survivor of metaplastic bc which only represents 1% of bc diagnosis. Like you, Laurel, her attitude is we just have to live our life--of course that is easier some days than others.
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Vicky
Age 47, TN, Diagnosed 05/09
Her2+, ER/PR-, Stage III, 2 tumors = 1 8cm tumor
Grade 3
Sentinel Node Biopsy-speck present in 1 node
Completed 3 month clinical trial of weekly Herceptin and 1000mg Tykerb daily
Tumor no longer present
Right mastectomy and lymph node removal 09/25/09
No cancer present at time of surgery, none in lymph nodes
Start TCH 10/15, every 3 weeks for 4 months followed by radiation
Finished chemo 01/28/10-YEAH!
Herceptin every 3 wks until end of June
Radiation begins 03/01, 6 1/2 weeks
Radiation complete--Yeah!!
Developed lymphedema after radiation
In hospital for 4 days with pneumonia:(
Herceptin done! 06/24/10
Port Removed 07/08/10
Still in PT for lymphedema and mobility issues
DIEP Reconstruction 05/11
I can be changed by what happens to me, but I refuse to be reduced by it~~Maya Angelou
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Old 02-23-2010, 09:53 PM   #9
Becky
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Re: percentage of those who respond to Herceptin

Chrisy is right. You are not looking at the statistics right.

Let's say at Stage 2 if given chemo (with surgery +/- rads) you have a 30% recurrence rate but if you're given Herceptin too, your 2 yr recurrence rate would become only 15% (as Herceptin halfs that) and then as time goes on, the rate would flatten out to about 20%. The difference is that you are assuming that all Her2s or all with bc recur and that does not happen, even if you don't get Herceptin. Herceptin just lowers the recurrence rate of those who would have recurred (and you don't know who you are until you do recur...). A Stage 1 woman has less odds of recurring and so on so treatments that lessen recurrence rates are most effective on those that are at higher Stages but those treatments do help all. A Stage 1 woman might only have a 10%-12% chance of recurring and taking Herceptin would lower that to 6% or so.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 02-24-2010, 05:50 AM   #10
whatz
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Re: percentage of those who respond to Herceptin

Thanks Becky and Chrisy for the clarification. And...just for the record :-) this is one more reason I love coming to this board. Wether we are a half full or half empty person, we can come here and ask our question and take each other serious without judgement. I love it :-) Thanks gals!
__________________
4/09 suspicious lump in left breast
5/09 biopsi lead to diagnosis ER/PR -
Her2+.Grade 3,full masectomy left breast,sentinel nodes clear,Stage 1
6/09 Adriamycin + Cytoxan 4 treatments (every 3 weeks) followed by Taxol + Herceptin, 1 treatment weekly for 12 weeks, followed by Herceptin for 40 weeks
MRI Brain 4/10 clear
CT Body 4/10 clear
PET Body 2/11 clear
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Old 02-24-2010, 06:35 AM   #11
Laurel
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Re: percentage of those who respond to Herceptin

Well now you all have me thinking (did you see the smoke rising in the east, or west depending on where you hail from?). To tag onto what Becky said it seems I recall where the response to Herceptin was also influenced by the amount of over expression of Her2. I was a 6.9 on FSH, so I'm quite the little over expresser!

This thread, and worrying about Ellie's news today, gave me a nightmare. In my dream I was in Sam's Club getting that call from the radiologist about my bx results. My knees nearly buckled when her first words were "are you driving?" I woke up with my heart thumping reliving that moment again. The fear of recurrence runs very deep and permeates our waking and sleeping moments despite our best efforts to contain it. It's the ultimate stalker.

Well, like Mr. Spock always says: LIVE LONG AND PROSPER!
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Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

15 Years NED
I think I just might hang around awhile....

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Old 02-24-2010, 12:04 PM   #12
v-ness
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Re: percentage of those who respond to Herceptin

thanks everyone. i actually am a 'half full' person most of the time and i don't know anyone who doesn't dip into the 'half empty' range sometimes, as i did last night. i ended up calling the HERsupport hotline last night and spoke to an oncology nurse. it was the first time in all these months i've called any hotline at all and am glad i did. she helped me understand things better and reassured me that my oncotype DX is specific to the genetics of my tumor and thus the most accurate reading where stats are concerned. a klonopin also helped.

i just hate math and statistics and i have no idea what prompted me to even bring the subject up with my oncologist. i do wish she would have said "in your case, valerie...." but whatever, i had my meltdown and recovered. i usually live like i haven't had cancer since it was removed on september 8 and ironically someone on another support board just wrote me the day before telling me how she admired me for being so positive, unconcerned with recurrence. but we all are at one point or another, particularly when presented with confusing information. it's the nature of the cancer beast. god, when bob had days to live we both still thought positively. we thought he was not only gonna get out of the hospital, but going to beat his cancer. i wouldn't have even had a meltdown if he was here to talk to. i get lonely and don't want to burden my friends or family with my intermittent fears. surely i'm not the only one screaming obscenities from time to time asking what the hell 'god' wants from me.

valerie

v
__________________
8/09 - IDC 1.8 cm triple positive, lumpectomy left breast
10/09 began chemo (taxotere & carboplatin) and weekly herceptin.
1/21/10 finished chemo, continued on herceptin every 3 weeks until 10/2010.
2/10 began 7 wks of radiation
6/10 mom dies of primary peritoneal ovarian cancer
8/10 got my last remaining ovary out
10/10 mammogram all clear
3/11 MRI shows 5 'spots' in right breast, largest 1 cm unidentifiable on US
needle biopsy proved the largest to be old inflamed cyst -phew!
7/10 switched to Arimidex
8/9 switched to Femara - allergic to arimidex
Femara made me lose hair quickly so switched to Aromasin
Aromasin made my hair fall out too and the bone pain was too much.
back on Tamoxifen 1/2013.
blood clot from trains and planes 5/2014 so on coumadin per onco for as long as i am on tamoxifen
tamoxifen was supposed to be up with my 5 yrs in may but my boyfriend was diagnosed with stage 4 colon cancer so i am staying on tamoxifen indefinitely because i want some ammo against BC, given the stress. lost my husband in only 10 wks in 2007 to stage 4 esophageal cancer.
cancer's screwing with another man i love
2/2016 - 6yrs in remission, off tamoxifen and off coumadin - yay!
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Old 03-06-2010, 07:17 PM   #13
bejuce
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Re: percentage of those who respond to Herceptin

Not to add more confusion to the mix, but I happened to catch Francis Collins, the director of the NIH, talking on our local NPR station on Friday (see podcast here), and he said that Herceptin's response rate is around 40 %.

I was expecting it to be much higher as well. I had read the HER-2 book a while back but my chemo brain probably made me forget about it.

In any case, I think there are a lot of inconsistent numbers out there, so I decided to call the HER connection support line. The nurse I spoke to wasn't entirely sure and she'll call me back on Monday to confirm, but the number that she uses is 50-52% reduction in recurrence rate in the adjuvant setting. She thinks the 40 % refers to the metastatic setting.

I'll post an update when I hear from her. I asked her to give me their latest stats.

Enjoy your weekend!

Marcia
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ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


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Old 03-08-2010, 03:31 AM   #14
adrien
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Re: percentage of those who respond to Herceptin

I'm still not clear on stats BUT I'm one on whom it does not work.
Adrien
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1999 IVDC oe+ grade 3
epirubicen, cysplatin, 5FU;
lumpectomy L breast, radiotherapy 6 wks, tamoxifen 3 mths, Examestane 5 yrs

2005 mastectomy (Left ) 10cm IDC in lymphatic system and blood vessels oe- HER2 ++;Taxotere, Herceptin 18 mths
2006 skin tumours below scarline Add Femera, 3 weeks radiotherapy twice daily (unsuccessful)
excision of tumours.
2007 jan skin tumour on L chest wall; positive Right axilla
Temerifen.
September Ca markers rise. Start Tykerb 3 wks radiotherapy
2008 skin tumours regrow. latissimus dorsal flap for excision of skin tumours March 08. HER2++++
Faslodex injections
CEA and Ca15.3 rising
2009
CT scan shows multiple mets in liver, lungs and inguinal glands. Stop Tykerb. Start Xeloda
CEA and Ca15.3 dropping like a stone. Skin tumours disappear.
Return 6 months later.
CT shows increase in size and number liver and lung mets.
Oct: Cyclophosphamide
Markers continue to rise. Change to Caelyx
2010
CEA marker in the 2000s Back to Herceptin
New tunour R Breast
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Old 03-08-2010, 03:02 PM   #15
curryalso
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Re: percentage of those who respond to Herceptin

What is the borderline number?
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Old 03-09-2010, 11:41 AM   #16
bejuce
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Re: percentage of those who respond to Herceptin

Hi everyone,

I spoke to a nurse at the HER2 Connections program yesterday (the number to call, btw, if anyone is curious is 1-866-449-4372). She told me that "response rate" is a term used only for metastatic patients, as in, how many of the patients when given the drug will show a response to it (tumor shrinkage). For those taking Herceptin in an adjuvant setting, the term they use is the "recurrence rate" or the rate by which patients on the drug would have a recurrence down the road.

So she clarified that the 40 % number is the response rate for metastatic patients, and the 50-52% number is the reduction in recurrence rate for the adjuvant patients. Note that these are the numbers officially provided by Genentech at the moment. I've seen higher/better numbers being given by oncologists elsewhere.

The lesson for me is not to focus on those numbers so much. Of course it helps hearing all the success stories out there; I try to tell myself that we're making history so to speak!!

Keep healthy,

Marcia
__________________
ER+ (30%)/PR-/HER-2+, stage 3

Diagnosed on 02/18/09 at 38 with a huge 12x10 cm tumor, after a 6 month delay. Told I was too young and had no risk factors. Found swollen node during breastfeeding.
March-August 09: neo-adjuvant chemo, part of a trial at Stanford (4 DD A/C, 4 Taxotere with daily Tykerb), loading dose of Herceptin
08/12/09 - bye bye boobies (bilateral mastectomy)
08/24/09 - path report shows 100 % success in breast tissue (no cancer there, yay!), 98 % success in lymphatic invasion, and even though 11/13 nodes were still positive, > 95 % of the tumor in them was killed. Hoping for the best!
September-October 09: rads with daily Xeloda
02/25/10 - Cholecystectomy
05/27/10 - Bone scan clear
06/14/10 - CT scan clear, ovarian cyst found
07/27/10 - Done with Herceptin!
02/15/11 - MVA-BN HER-2 vaccine trial
03/15/11 - First CA 15-3: 12.7 and normal, yay!
10/01/11 - Bone scan and CT scan clear, fatty liver found
now on Tamoxifen and Aspirin


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Old 03-09-2010, 11:50 AM   #17
Becky
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Re: percentage of those who respond to Herceptin

The 50% rate is for the first 2 years via the adjuvant trial. Follow up on those women at 5 years shows a 38% rate (31% if Herceptin is used alone).

There is lessening of affect because some recur later naturally. This lessening will continue over time but those getting Herceptin are better off than not but 50% no longer holds true and over time, the 38% won't either.

PS - After thinking, I feel I have not been very supportive in my message. Although my stats are correct, one must always remember that treatment of any kind is given to reduce the odds of recurrence, either local or systemic. For everyone, it is not a cure all but for many, it certainly is. Even after 5+ years out, I too think about recurrence as it certainly can still happen. However, every day and every year that passes, that chance does diminsh. I do remember the first 3 years out, especially the first one or two years, when the threat of recurrence is all you think about. It is normal but it is also not right. But many things are not right - like having to join our special club in the first place. All treatment works well and gives great stats in the get go but that does fade over time. Use that time wisely and put yourself in a good place. Enjoy yourself and your life. It holds true for everyone, not just cancer survivors. Keep thinking of yourself as a survivor because you are.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"

Last edited by Becky; 03-10-2010 at 08:49 AM.. Reason: Add a PS - Supportive message
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Old 03-20-2010, 08:41 PM   #18
Lisajean
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Re: percentage of those who respond to Herceptin

I feel sick. I am so scared and worried. I don't have a right to come here with that - I mean we are all going through this. I was diagnosed in March of 09, had 6 rounds of taxotere/carboplatin, bilateral mastectomy - Aug, 09, rads (were delayed by infection) completed by 12/09. I am completing the year long Herceptin now. Terrified to be going off of it. Terrified in general.

How does one get through this? Does one get through this. Sorry to be so grim. I just postponed reconstructive surgery because I am feeling too weak (body and mind) to have it right now. And, I just want to survive this - having "breasts" again seems so stupid right now, like I care about that.

I have just lost it recently - having trouble holding it together - so I came here and now, I am even more afraid. Any suggestions? Anti-depressant maybe? I don't know what to do.
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Old 03-20-2010, 09:33 PM   #19
adrien
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Location: Balmain Sydney NSW
Posts: 53
Re: percentage of those who respond to Herceptin

YOur post brought tears to my eyes because it is how many of us have felt and many still do.
You did just the right thing postponing your reconstruction. There's plenty of surgeons around who can do that when you're ready. This is the time to be kind to yourself, rest, heal, call upon your family and friends ( I really hope you have someone there for you). CRy lots and laugh lots, dance, walk in the rain, pick flowers. Do what you want as much as your circumstances allow you.
I'm sure you'll get much more practical advice from others here but I feel strongly this is your time for you to do what makes you feel goood. Anti depressants are quick fixes. While i wouldn't say don't take them-think-what else makes you feel better?
From one who's been there many times.
Love,
Adrien
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1999 IVDC oe+ grade 3
epirubicen, cysplatin, 5FU;
lumpectomy L breast, radiotherapy 6 wks, tamoxifen 3 mths, Examestane 5 yrs

2005 mastectomy (Left ) 10cm IDC in lymphatic system and blood vessels oe- HER2 ++;Taxotere, Herceptin 18 mths
2006 skin tumours below scarline Add Femera, 3 weeks radiotherapy twice daily (unsuccessful)
excision of tumours.
2007 jan skin tumour on L chest wall; positive Right axilla
Temerifen.
September Ca markers rise. Start Tykerb 3 wks radiotherapy
2008 skin tumours regrow. latissimus dorsal flap for excision of skin tumours March 08. HER2++++
Faslodex injections
CEA and Ca15.3 rising
2009
CT scan shows multiple mets in liver, lungs and inguinal glands. Stop Tykerb. Start Xeloda
CEA and Ca15.3 dropping like a stone. Skin tumours disappear.
Return 6 months later.
CT shows increase in size and number liver and lung mets.
Oct: Cyclophosphamide
Markers continue to rise. Change to Caelyx
2010
CEA marker in the 2000s Back to Herceptin
New tunour R Breast
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Old 03-20-2010, 09:44 PM   #20
Gerri
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Posts: 900
Re: percentage of those who respond to Herceptin

Lisajean,

Of course you have a right to come here with your fears, that is exactly what our support board is for. We have suffered so many loses lately, and it is a very sad time for us, but please know that there are many of us out here that are doing well.

I don't know that I have any great words of wisdom about how to get through this, just know that it does get better. Take one day at a time, and if that is too difficult break it into smaller parts. Make sure you are getting enough rest and are eating well....and don't forget to breathe...slowly and deeply, it will release some of the tension you are feeling. Be sure and mention to your onc that you are having a little trouble dealing with the stress - your emotional health is important too as you go through treatment and he/she may have some suggestions to help you cope.

Come here anytime you need support - we are here for you.

Take care,
__________________
Gerri
Dx: 11/23/05, Lumpectomy 12/12/05
Tumor 2.2 cm, Stage II, Grade 3, Sentinel Node biopsy negative
ER+ (30%) /PR+ (50%), HER2+++
AC X 4 dose dense, Taxol X 4 dose dense
Herceptin started with 2nd Taxol, given weekly until chemo done
then given every 3 weeks for one year ending on March 16, 2007
Radiation 30 treatments
Tamoxifen - 2 yrs (pre-menopausal)
May 2008 - Feb 2012 Femara
Aug 2008 - Feb 2012 Zometa every 6 months
March 2012 - Stop Femara, now Evista for bone strengthening
**********
Enjoy the little things, for one day you may look
back and realize they were the big things.
- Robert Brault
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