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Old 02-06-2010, 09:09 AM   #1
Skip
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Location: Riverside, CA
Posts: 19
Life changed November 09

Last November my wife found out she had breast cancer, Her2+ grade 3 stage 4, its been a rollercoaster ever sense . I'm trying to keep her positive telling her that Herceptin along with her chemo will slow it down or stop it from spreading. I found this forum and she read some of the stories posted here and it seemed to help some. How can I help her to get through this?
Thanks!
Sorry about the bold print I keep turning it off but it goes to bold as soon as I start typing
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Old 02-06-2010, 06:23 PM   #2
Lori R
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Re: Life changed November 09

Skip,
By finding this forum, you are already of great help. I encourage you to continue to access this site as it is an amazing source of information and inspiration.

If my emotional outbursts serve as a bit of a guide, please be patient with your wife as she takes stock of her past and trys to absorb what the future might hold.

A book that was helpful for me was "The Power of Now" by Eckhart Tolle.

Finally...check out my history. I was diagnosed Stage IV 2 1/2 years ago. I was able to live a full and active life through chemo and currently am No Evidence of Disease (NED).

So, please take heart.

We are a fun loving group of survivors and welcome you to our shared journey!!

Lori
__________________
2007
Oct - Diagnosed - Stage IV
5 c.m. IDC - Left Side er/pr- Her2+++
Node + 2/14 - Single Liver Met
Double Mastectomy
Nov - Begin T+H
2008
Feb-Complete 6 cycles- T&H- NED
March - Continue - Herceptin Only
April - Rads for 6 weeks
2009
Continue Herceptin - Continue NED
April - Recurrance- 3 cm. Liver Met
May - Cryosurgery
June - November - Abraxane + Herceptin
Aug - PET/CT - CTC = 0 Back to NED
2010
January - Continue NED
July - Recurrance - 3 cm Liver Met CTC=1
August - Cryosurgery #2
August - November Navelbine
November - Back to NED - End Navelbine
2011
Feb - Recur - 4 cm Liver Met - Same Left Lobe
March Surgery it is -Couldn't get a clean margin
July - Confirmed continued liver involvement
August - Begin Herceptin + Tykerb
October - Mixed results from H+T
Add Abraxane + H + T - Nov - April
2012
January PET Scan - It's working!!
April - Back to NED
July - Recurrance
August - Begin TDM-1 Trial (Taxol + TDM-1)
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Old 02-06-2010, 09:11 PM   #3
chrisy
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Re: Life changed November 09

Skip,
Funny thing about the typing, it looks bold but in the end it isn't. Maybe it's the opposite of people fighting cancer - we don't feel bold but then we find we are after all.

You can read my "cancer bio" below, I was diagnosed with Stage IV in Sept 2004 and, like Lori, currently have no evidence of disease.

Part of the battle - maybe the biggest part - is maintaining hope. There is much reason to be hopeful.

For me, what helped most early on was being told (by a fabulous oncologist) that the game had changed for Her2 positive bc. That more and more, people are living well and much longer with this disease - and that there is a ton of research going on in this area (her2+ cancer).

See how your wife responds to therapy - getting some "good news" will be the biggest encouragement.

Be aware as you learn and do research on this disease, most statistics are still "old", before Herceptin, and not really applicable any more.

I first came to this support board in my search for realistic hope, and found a wealth of information and news about how research is progressing. There are a lot of very smart people working on this, and it is my hope, and belief, that answers will be found. My job is to hang on long enough to benefit.

Some books I found helpful were "There's no place like hope" by cancer survivor Vickie Girard. Also, check out the book "fight Cancer" by Richard Bloch. You can actually download it off the internet. This book has been around forever but has very useful sections for caregivers as well as patients. Bloch was diagnosed with lung cancer, told there was no hope, and then went on to live a ridiculously long time before dying of something else in his 90's.

Don't get me wrong. Fighting cancer is not easy, and although I try to be positive I have days (not as many as at first) where it's just too much. It will always be a rollercoaster, but you can and will learn to ride it.

For the most part, even though there have been ups and downs, I've been able to be fully in my life, and I love my life! I've continued to work, travel, and just be like a normal person.

The most important thing my husband did to help me was to let me know he loved me and was in it with me for the long haul. This is a marathon, not a sprint.

He also expected me to still make his dinner (except on chemo day)! He expected me to live and to carry on - and I did. Although I would have perhaps benefited from a little more pampering

Hang in there, keep faith. We are here to support you both in any way we can.

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

Last edited by chrisy; 02-06-2010 at 09:17 PM..
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Old 02-07-2010, 06:21 AM   #4
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Re: Life changed November 09

Thanks for the encouragement! Its good to know that others are living a normal life. Good news would be nice, every time we here something its bad. Her breast cancer had spread to her liver a CT scan found it. She is worried its spreading "all over". I tell her that after all the CT scans, MRI'S and xrays they have not found anything else.

This sight has opened my eyes on the research I've done. Most info is old, not current.

She had her first treatment last Thursday, Herceptin & Taxotere. It was rough on her, she had a lot of pain all over her body, is this common? We were told it was a side effect of Taxotere.

Thanks.
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Old 02-07-2010, 10:19 AM   #5
sloop
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Re: Life changed November 09

greetings
hang in there skip .i know what you are going thru .my wife was dx in july of 08 with metastic bc .since then my life has been upside down and inside out .in dec of this year she also had brain mets dx and since then has had wbrt ,steroids to reduce swelling and currently on tykerb and xeloda .she had lost a lot of weight but is slowly regaining it .we are hopeful that she will pull thru this .it is a battle that i would not wish on my worst enemy.keeping positive is hard at times but stay the course because this dog can be beaten into oblivion.your wife needs lot of hugs and love thru this and you just being there will help her a lot.but also take care of yourself as you are fighting this also .i found this as well as other discussion groups to be very helpful to me just by reading others posts .the people here understand what we are going thru and are very good at offering advice and encouragement.all the best to you and your wife and as i read somewhere else until every cancer cell is eradicated there will be no retreat and no surrender.
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Old 02-07-2010, 04:39 PM   #6
chrisy
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Re: Life changed November 09

Skip,
I don't know if you checked out my bio, but my mets diagnosis was in my liver (only) even though it was extensive. For some reason the liver is on of the places her2+ likes to go, so it is fairly common to have that be the first/only site. You do want to be sure what you're dealing with, so it's good she's had an MRI - you might check out a bone scan just for a baseline if she has not had that. But so far, it looks like she's only dealing with liver mets - and the liver is the one organ in the body that can regenerate.

I didn't have taxotere, I had taxol/carboplatin/herceptin. So I can't comment on the side effects. I do remember the herceptin loading dose also can cause problems. Make sure her doctor or nurse is aware of the symptoms, there may be something they can do to mitigate. Or they might get better on their own.

Skip, the beginning of chemo was really hard for me. Not so much physically as much as complete fear and dismay that this could be happening to me. But treatments can be very effective, and Her2+ cancer generally responds very well to the taxanes. You just have to view the chemo as your friend - strong medicine - and have faith it will work.

One tip on the taxotere, it can cause damage to the nailbeds so everyone getting that at my clinic put bags of frozen peas on their fingers and toes during the taxotere infusion. It sounds goofy, but I actually saw a study confirming this does help (the study used something more controlled than frozen veggies, but the point was, it was cold!) One lady had a wonderful spouse who came with her and rubbed her feet afterwards - everyone was quite jealous.

Hope she feels better soon. Remember, however bad she feels, the stupid cancer cells feel even worse!
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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 02-07-2010, 07:22 PM   #7
Skip
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Location: Riverside, CA
Posts: 19
Re: Life changed November 09

Thanks for the tip for the fingers!

She has had a MRI,bone scan and a ct with contrast, the bc has only spread to her liver as far as the test show. Her 27-29 count was around 200.

We see the Onc. On the 10 and have quite a few questions for him. My wife is not happy with him so we are going to ask for another Onc. She just is not connecting with him. This is something I feel is important, she has to connect and trust her oncologist!


Next round of chemo is the 18th of this month. We are more prepared and have a better idea of what to expect and have the right meds at home to combat the side effects she has to deal with

Thanks for all your good wishes and information its a big help
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Old 02-08-2010, 05:01 PM   #8
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Re: Life changed November 09

Skip,

Please read Ginger's Story:

http://her2support.org/community/mem...8-ginger-empey

Ginger is still alive and doing well in Bakersfield, CA.

My wife was originally diagnosed in 1990, was treated, but had a recurrence in 1999 that included brain mets.
She was treated with Herceptin and radiation and is now
cancer free 11 years later.

If you don't mind traveling, I would suggest Dr. John Link or Dr. Waisman in Orange County.
http://www.breastlink.com/centers.htm They are both great oncologists.



Warmest regards to both you and your wife.

Joe
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Old 02-13-2010, 12:01 PM   #9
Westcoastgirl
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Re: Life changed November 09

Skip, I think that taxotere and taxol are similar. I got what I called spaghetti legs with it and lots of pain but with each infusion the pain and the spaghetti legs were less. I knew that the symptoms would leave eventually so was patient during the time but it was very hard on my husband. I also did not like my onc but what I did to feel more in control was sign a consent to release info to myself and have kept a binder of all results. I read and ask questions. It helped me to feel like I had some say in all of it.
__________________
12/17/08 biopsy after two 6 mos mammo recalls
12/30/08 diagnosed high grade IDC & DCIS
ER/PR +, Her2 (+++) post menopausal/age 57
1/15/09 double mastectomy/skin sparing; no evidence of vascular/lymphatic invasion, 8neg/8 nodes (tumor 8.0mm)
2/16/09 given portacath/removed 4/30/10
2/18/09 "surprise" 2.0mm tumor/positive borders~
completed 28 rads 10/09.
2/23/09 until 4/19/10~treatments every 3wks (4 Cytoxan + Adriamycin, 4 Taxol + Herceptin, 13 Herceptin alone)
8/09 osteoporosis diagnosis/Zometa 3 yrs of 1x/6 months
Chemo side effects; Deafness, kidney function loss
11/09 began Aromatase Inhibitor (Femara)/Feb2014, stopped Femara early/after 3 mos began Tamoxifen for 8 mos to complete 5 years
11/10 Reconstruction, directly to silicone implants
12/11 nipples by skin graft/Right breast size reduced

I have heard th
ere are troubles of more than one kind

Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have trouble with me!
Dr. Seuss
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Old 02-14-2010, 12:34 PM   #10
Skip
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Posts: 19
Re: Life changed November 09

After our last visit with her onc shes more at ease with him, he talked to her like it came from his hart not a script. So she's not going to replace him.

I hope her side effects subside some it will bring her some peace.

Thanks.
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Old 02-15-2010, 12:37 PM   #11
StephN
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Wink Re: Life changed November 09

Hi Skip -
Getting comfortable with the onc is also akin to getting used to the fact that she has a disease and must fight it. Sometimes we have to learn not to "shoot the messenger." This may not be the case, and maybe he was really having a better day and seemed more humane.

The main thing is that you know that you have Loma Linda and other places for second opinions not too far away.

I have now been living 10 years with cancer. I had a major and fast invasion of my liver only 3 months after taking my initial treatments. My liver did not just have a couple of tumors; it was shot through with small as well as quite large tumors - covering about 60% of my liver in total. I was able to get some good drugs which stopped and quickly reversed the cancer. I have never had another tumor show up from my neck down since 2002.

Had 2 brain mets that showed up a couple years later, but I was being screened just in case and the tumors were successfully treated. That was 5 years ago.

You will see by my signature the rest of the details. When I had my breakout of liver mets, I was pretty scared as the stats in 2002 were way against me. But, I am here to encourage you and your wife to just accept the treatments as "life saving" drugs and not merely something that makes her feel even worse. I held that "life saving" carrot in front of me and asked the good Lord for a successful Search and Destroy Mission while on my way to each treatment and every night.

Your wife has a very high probability of chasing off her liver tumors and living a normal life span.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 02-17-2010, 07:21 PM   #12
Bill
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Re: Life changed November 09

Hi Skip! I'm glad you found this site. It's an awesome source of answers to almost any question, and limitless parayers (LOL, I did it again, I always mis-spell "prayers"). There are so many long-term survivors out there, but most don't choose to continue to post on cancer support websites. They are out there living their lives. And like you said, my friend, most information that you read regarding cancer and treatments is dated. You guys hang in there. Let us know how we can help.
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