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Old 03-26-2009, 03:19 PM   #1
PetuniaJan
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Question MA31 Trial Anyone?

Hello everyone,
I am as green as they come....Went for a mammogram Feb 3/09...Mastectomy, left breast Feb 27/09.
HER2 positive, 23/26 lymph nodes cancerous. The cancer is metastatic in the bone. (few tiny spots elsewhere too) Waiting to see if the brain scan allows me to take part in this new trial...
My father passes away yesterday and I was able to have a real good cry.
I somehow feel detached from this cancer and am able to keep my thoughts positive and I am NOT ready for the bell curve of 18-24 months to live!!!!
Door 1 was quality of life, in door 2 was the Chemo Docetaxel with Herceptin and in door 3 MA31 trial... with Docetaxel & Lapatinib combo or Docetaxel with Herceptin. Anyone have any feedback?
Love
Jan
(mother's nickname for me is Petunia)
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Old 03-26-2009, 05:17 PM   #2
Laurel
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Petunia,

I am so sorry you are joining our merry band of Her2 pranksters! This site is an invaluable resource for information and support. Welcome.

I am certain you are quite numb at the moment. A terrible, wrenching diagnosis followed by the death of a parent, how utterly awful. I am so sorry, Jan.

It sounds to me as though you are very strong, a real warrior spirit. That is a good thing. You will need to call upon all your courage to fight this foe. I think I would recommend Door #2, the Docetaxel & Herceptin, because they have been proven to be effective and have a longer track record. Tykerb can be implemented later. I wonder if they are also considering carboplatin with your taxel/herceptin, TCH? I'd hit this monster as hard as I can, Jan, from the get go. BTW, a second opinion is always in order.

Mine is only one opinion. You will receive many others in the ensuing days. My prayers are with you. Stay close to this site. You will draw strength from these brave souls who populate this site.
__________________


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

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

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Old 03-26-2009, 09:13 PM   #3
chrisy
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hey tuney

heck of a month - thank goodness February only has 28 days...

Sorry you are here, but glad you are here. It's natural to be feeling numb and disconnected.

You specifically asked for advice on the choices before you. I agree, a second opinion is always in order; at least make sure your team includes a breast cancer specialist at a highly regarded cancer center. You deserve the best.

Obviously your real choice is between door #2 and #3 - and you don't necessarily "not" have quality of life by choosing one of these (don't claim side effects until/unless you actually get them).

Either #2 or #3 are good options - so whatever choice you make will be a good one. #2 is the proven combination and Laurel raises a good point about hitting it hard, maybe adding carboplatin.

From a side effect profile there is a bit of difference but both would be tolerable. Both lapatinib and herceptin have shown to be effective, so it's not a question of a completely experimental drug. As I said I think either one would be a good choice.

A big difference is that Lapatinib crosses the blood brain barrier, herceptin does not so there is some evidence that Lapatinib is protective of the brain. If I had cancer in multiple locations, I may lean towards the lapatinib.

Whatever you decide, it will be the right decision for you. Then save the other one for later. Forget about the bell curve, not only is most data prior to the availablity of Herceptin, but it is only a statistic, and you are not.

Hang in there, and let us know what you decide!
Chris
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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 03-27-2009, 07:50 AM   #4
Ellie F
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Hi Jan I echo everything said already.I followed the advice from friends on this site and sought a second opinion following a recurrence a year after diagnosis. Went to a centre of excellence in the UK and saw an eminent breast onc. Thank God I did. He has completely changed my treatment plan (my original onc said do nothing and wait and see!) and has recommended docetaxol and herceptin which he says is an excellent combo.Sorry you are having such a bad time.Keep us posted and let us know how it goes. Ellie
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Old 03-27-2009, 09:51 AM   #5
PetuniaJan
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Thanks!!
I am feeling a whole lot better today My father was in the hospital, so it wasn't a shock but it still is sad, I am almost finished with the arrangements. The great thing that happened the day Dad died was one of our dogs Lola(I didn't name her) had 4 puppies and they are too cute!!
I value the opinions of all of you, once again thank-you!! The carboplatin was in the first chemo cocktail they were offering me, I am not sure why they were taking it out. I am only able to take part in door 3 if my MRI comes back OK.
How does one put a photo on their profile?
Have a great day!
Jan
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Old 03-27-2009, 10:23 AM   #6
chrisy
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hi Jan,

I can answer the picture question! Click on UserCP on the top of this page, then click on "edit avatar". You can import an image from your computer or a url, but it has to be compressed to a small enough size.

Look forward to "seeing" you or your puppies, or both!
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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 03-27-2009, 12:08 PM   #7
PetuniaJan
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Thanks Chrisy,
I look forward to getting to know everyone and I really am grateful for all the
help from everyone
Love Jan
__________________
Feb. 3 /09 routine Mammogram,
Feb 27/09 Mastectomy, left breast
23/26 lymph nodes positive yikes!!
Her 2 positive
stage 4 metastatic (bones,lung and multiple regional & non regional lymph nodes)
Started New Trial NCIC MA.31 April 8/09
Docetaxel every 3 weeks + 5 Lapatinib daily ...so far so good...:)
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Old 03-27-2009, 12:44 PM   #8
Sparkles
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Wink Hi Everyone!

Petunia Jan is my sister. If anyone can overcome this foe it is Jan. She is the most amazing granola child you will ever meet.Jan has walked up mountains for years...(LOVE THIS PROFILE PICTURE! IT IS SO JAN..) an inspiration for everyone who knows her... She has a great love of life & people...more friends than anyone I know...which is good, as they will ALL lift her up during this difficult phase in her life. I KNOW she IS a survivor! I am so proud to say she is not only my sister..but my friend. Lucky me!
I am happy she has found this support group to be able to talk to other women who are going through the same thing. I agree with the comments that say don't claime bell curves, side effects or stats... Positive thoughts will see you through the dark hours... My prayers are with everyone ..and again Thank you!
Dawn AKA Sparkles the clown...Dawn was taken...lol
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Old 03-27-2009, 01:21 PM   #9
PetuniaJan
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Thanks Chrisy,
I look forward to getting to know everyone and I really am grateful for all the
help from everyone
Love Jan
__________________
Feb. 3 /09 routine Mammogram,
Feb 27/09 Mastectomy, left breast
23/26 lymph nodes positive yikes!!
Her 2 positive
stage 4 metastatic (bones,lung and multiple regional & non regional lymph nodes)
Started New Trial NCIC MA.31 April 8/09
Docetaxel every 3 weeks + 5 Lapatinib daily ...so far so good...:)
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Old 03-27-2009, 01:35 PM   #10
Sparkles
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Talking Tattoo

Last week I got a tattoo of support on my wrist for our "Petunia" .... think happy, good thoughts for Jan...
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Old 03-27-2009, 03:13 PM   #11
chrisy
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I love Jan's picture too!
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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 04-07-2009, 03:19 PM   #12
bcindc
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Hi Jan & Dawn. Big hugs for all you are going through. Based on that awesome picture alone, it looks like Jan is going to be around a heckuva lot longer than 18-24 mos. The first thing the support ladies will tell you is that those statistics are just a bunch of hooey since they don't really reflect how long all of us are living thanks to the dozens of treatments available now that didn't exist even a few years ago. Thank goodness I listened to them since I'm still here kicking around and doing great. Sending healing energy your way.
__________________
Diagnosed 12/03 HER2+ ER+ PR-
AC & T 1/04-6/04
Mastectomy 7/04 7in tumor, 5 of 9 nodes positive
Radiation 8/04
Herceptin 2004-05
Arimidex Zoladex 2004-07
Recurrence 12/07 liver mets, bone mets, pleural effusions
Navelbine, Zometa, Herceptin 12/07-8/08
Carboplatin, Abraxane, Zometa, Herceptin 9-12/08
Ixempra, Zometa, Herceptin 1-3/09
Avastin, Tamoxifen, Zometa, Herceptin 4/09-present
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Old 04-08-2009, 08:59 AM   #13
donalddonald
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Hi, just want to say "All you are great!"
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Old 04-08-2009, 10:46 PM   #14
PetuniaJan
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Smile First Chemo:)

Well the great news was no brain cancer and I was eligible for the MA31 trial, the random selection puts me in the Chemo Docetaxel & target drug Lapatinib . Today was my first CHEMO and I feel fine(fingers crossed it stays that way)
I was told my hair will fall out in 7-10 days...I look fabulous in hats!! ha!I guess that is lol in this language...
All the other symptoms are not so easy but hey it looks like I'm not the first....and many a brave , strong ,smart & beautiful..hey wait that is our hiking mantra..ha! ( and there is a story behind those words...)
Seriously my heart is so happy to be able to read others stories that have been to the moon and back and are here sharing their stories
with open minds, compassion and HOPE
THANK YOU to each and everyone that responds and shares
Love Jan
__________________
Feb. 3 /09 routine Mammogram,
Feb 27/09 Mastectomy, left breast
23/26 lymph nodes positive yikes!!
Her 2 positive
stage 4 metastatic (bones,lung and multiple regional & non regional lymph nodes)
Started New Trial NCIC MA.31 April 8/09
Docetaxel every 3 weeks + 5 Lapatinib daily ...so far so good...:)

Last edited by PetuniaJan; 04-08-2009 at 10:47 PM.. Reason: http://vimeo.com/moogaloop.swf?clip_id=2539741
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Old 04-08-2009, 10:48 PM
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