HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Today's Posts

Reply
 
Thread Tools Display Modes
Old 04-15-2009, 10:43 AM   #21
Linda
Senior Member
 
Join Date: May 2006
Posts: 143
Oh...I misunderstood

Oh, now I understand your herceptin question, Maureen. I'd assumed that H was also part of your six mo neoadjuvant treatment, adding up to a year. Sorry about that.
I'd agree with others about doing a consult, or two or three, if you have any doubts -- although it certainly seems like you are with cutting edge top docs. And you'll have over six months to figure this out, so I wonder if you could even consult other experts by mail/email.
Thank you for taking part in this trial. You are helping other women and hopefully helping establish a successful new protocal that will give you great results.
best
Linda
Linda is offline   Reply With Quote
Old 04-15-2009, 10:52 AM   #22
Mary Jo
Senior Member
 
Mary Jo's Avatar
 
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
Hi Maureen,

I really have no more to add than what this wonderful group of women already shared with you. Yes, we have all been their....and coming here to share was just the right thing to do. ONLY those of us who have been their can truly understand.

I went through what you are going through around the same time after my diagnosis. I remember it being a rough, scary, constant worrisome time for me. I thought I had a recurrence on a daily basis. That may strike you as funny reading this but TRUST ME when I tell you there was nothing funny about it at the time.

I'm happy to read that you are seeing a counselor. That was a smart move and I'm sure that will help immensely. Have you thought of joining a local breast cancer support group in your area?

Maureen I ask God to surround you with His peace and thank Him for a dear "sister" like you. It was good you felt led to share your heart with us here. I am sure you will find some comfort and understanding from all the women shared with you.

Surrounding you with prayer Maureen,

Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10

Dx. 6/24/05 age 45 Right Breast IDC
ER/PR. Neg., - Her2+++
RB Mast. - 7/28/05 - 4 cm. tumor
Margins clear - 1 microscopic cell 1 sent. node
No Vasucular Invasion
4 DD A/C - 4 DD Taxol & Herceptin
1 full year of Herceptin received every 3 weeks
28 rads
prophylactic Mast. 3/2/06

17 Years NED

<>< Romans 8:28
Mary Jo is offline   Reply With Quote
Old 04-15-2009, 11:45 AM   #23
mmoons
Senior Member
 
mmoons's Avatar
 
Join Date: Oct 2008
Location: Detroit, MI
Posts: 205
oh my...

All of your sage advice and loving words makes me so glad I finally "dumped" my emotions and posted to you all. I am so touched...and so grateful. Reading each of your posts is like a balm and I will come back and read them over and over...and maybe be less weepy each time...I am so moved all your loving words!

Jean, you asked an excellent question. I called my oncologist, who, as terrific and well-respected as she is, has no ego issues. She explained that the 6 months of Herceptin is the final leg of the clinincal trial. We can and will adjust the treatment plan if needed. She assured me that we would be watching and scanning...and she will not take her eyes off me. Lovely.

I feel better today....lighter. And all of your kindness and loving support is a huge reason for that. I CHOOSE to live and cherish in this moment. I may slip now and then but right now I feel good. My most heartfelt thanks, sisters!

Maureen
__________________
Maureen


My loves

IDC & DCIS, HER2+++ Diagnosis: October 1, 2008
  • Tumor: 6.8 centimeters, never showed on mammograms
  • ER-/PR-
  • November 2008: Sentinal Lymph node surgery. 6 out of 9 lymph nodes with cancer
  • Stage IIIc
  • Lapatinib Clinical Trial start: November, 2008
  • Surgery: May 5, 2009
  • Started Herceptin: May 19, 2009
  • Started Radiation (33 rounds): June 10, 2009
  • September 2009: Moved to Michigan to be closer to family
  • 12/09 - still on Herceptin until May 2010
  • August 2010: Port out, port out, port out port out port port port out port ooooout...da da da dant! (to the music of the Pink Panther)
Blog: http://moonsfamily.blogspot.com
mmoons is offline   Reply With Quote
Old 04-15-2009, 01:47 PM   #24
schoolteacher
Senior Member
 
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
Maureen,

Hope you are feeling better today.

Amelia
schoolteacher is offline   Reply With Quote
Old 04-16-2009, 11:06 AM   #25
Gabrielle
Senior Member
 
Gabrielle's Avatar
 
Join Date: May 2006
Posts: 46
Light at the end of the tunnel

Hi Maureen,

I'm in my 10th year of survival; Stage III, 9 positive nodes out of 21; IDC, 5.2 cm tumor, Her2-Neu, estrogen negative.

I was 44 at diagnosis; my kids were 9 and 12, then. Now, I'm writing this from work; my oldest is getting ready to graduate college and my youngest; high school.

You sound like you're getting great care. I didn't get reconstruction until my 6th year; no rush on that.

After your 6 months of Herceptin are up, request another 6 months. Our docs are life-lines but they're not gods. Fight like your life depends on it! You're entitled. You don't get any points for being a "good" patient.

Very ok to rage, rage, against this disease. No points to be had, either, for being overly docile when anger is appropriate.

But, do put the cancer into the mental small box it deserves and look to the future. You'll be part of it.

Hugs,
-Gabrielle
Gabrielle is offline   Reply With Quote
Old 04-16-2009, 12:18 PM   #26
vickie h
Senior Member
 
vickie h's Avatar
 
Join Date: Jun 2006
Location: san luis obispo, ca
Posts: 1,150
Hi Maureen,
I've been thinking of you and hope you are feeling better today. I just read your post and agree that rage is necessary at times...without it we become way too complacent. Rage all you need to and then come back to your inner self and let the healing love flow around you. Everyone here has been there- full of doubt, anger, sadness and hopelessness at times in their journeys. There is much to learn and we have been given this disease with no operating manual or instructions. What we do have is the experiences of those around us who have traveled this path before us, our doctors, our loved ones and God (or a higher self).
I am here, holding tightly to your hand, breathing deeply with you, sending you love, healing, and prayers.
Love, vickie
__________________
Love and Hugs, Vickie

Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.


Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
vickie h is offline   Reply With Quote
Old 04-16-2009, 09:35 PM   #27
Sherryg683
Senior Member
 
Sherryg683's Avatar
 
Join Date: Feb 2006
Posts: 1,014
Going through the chemo for me was just the beginning of the battle. You are right, it's the days, months and years that follow that are hard. I felt like a vietnam veteran, totally shell shocked and paralyzed with fear that is was going to come back. The nights were always the hardest, and when I looked at my young daughter who was 7 at the time of diagnosis, I would just hold back the tears. In the past 3 years, I have watched friends and my bother pass from cancer and it just made things even worse. I think I finally reached a point where I decided that I would not let this beast take away my living and joy of life any longer. It has only been in the last 6 months that I have decided that I will not allow myself to be drug down into that hole of hell that I have been in. I could live another 20 years and do I want to look back and say that they were all in fear...definately not. Do I still worry, of course. Am I still fearful...of course..but when it gets out of control, I tell myself to STOP...change my train of thoughts and say I WILL NOT GO THERE. I try to stay busy and do as many enjoyable things as possible to keep my mind busy on the positive. You are just beginning your battle . Please be easy on yourself and you will find your own path to take. If you feel like crying ..do so, it relieves the stress. It is hard for you with 2 young ones and no supportive spouse. But if you just allow yourself to go through whatever feelings you have to go through to heal yourself physically and emotionally, one day you will wake up and cancer will not be the first thing you think of. You will regain your life back, it will just take some time. I am glad to hear you have sisters that you can lean on and who will listen to you when you need someone to talk to. To me that was the thing that bothered me most, no one wanted to hear me talk about my fear of dying or hear me talk negatively. I was trying to sort through things and everyone just wanted to pretend it was all OK and going to be fine. Cancer is a life time sentence that does not end with chemo, but it doesn't have to take the life out of us while we are still living. Hang in there and like I said, give yourself some time...sherry
__________________
Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
Sherryg683 is offline   Reply With Quote
Old 04-17-2009, 12:15 AM   #28
sarah
Senior Member
 
Join Date: Sep 2005
Location: france
Posts: 1,648
dear Maureen,
Yes, we've not only all been there but unfortunately revisit that place from time to time.
It will pass and you will be able to enjoy life again.
Like you, my cancer is not visible on xrays.
Since you have children, you have an added worry.
You are brave and you will soon be through your treatment and be able to feel once again in charge of your life.
hugs and love
sarah
sarah is offline   Reply With Quote
Old 04-17-2009, 06:23 AM   #29
MJo
Senior Member
 
MJo's Avatar
 
Join Date: Apr 2006
Location: Wilmington, Del.
Posts: 1,126
Maureen - I am amazed at how beautiful women look bald. I think you look beautiful. I think I looked beautiful. My survivor friends all looked beautiful to me. I loved not having to dry my hair after a shower. Of course, I am happy to have my hair back, now.

If there is ever a time to pamper yourself and put yourself first, it's during cancer treatment. Even with two precious babies to worry about, I hope you can treat yourself very well.

I didn't have a spouse to help me through treatment either. My mother and brothers acted so frightened and helpless that they began to irritate me. People at work didn't contact me, and now when someone at work is touched by cancer, I make a point to ask them how things are going.

It's hard to believe it now, but the trauma will fade. My last Herceptin treatment was December 2006. Last week I bought one of those pink wrist bands to wear because I am getting back to bad habits. I needed a reminder to be vigilant, care about my health, stress levels, etc. I needed a reminder that every day is precious.

The aggressive treatment they are giving your Stage III cancer sounds amazing. It should wipe out any rotten little stray cells. I think Tykerb is turning out to be a great drug.

God bless and keep writing. You can write anything. We are here for you and we've been there.
__________________
MJO

IDC, Stage I, Grade 2
Oncotype DX Score 32
Her2++ E+P+, Node Neg.
Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
2 years of Arimidex, then three years of Femara
Finished Femara May 2011
MJo is offline   Reply With Quote
Old 04-17-2009, 08:44 AM   #30
chrisy
Senior Member
 
chrisy's Avatar
 
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
Dear Maureen,
See, you have deep wisdom after all. To be able to feel and then share as you did is, I think, part of what helps us heal.
__________________
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
chrisy is offline   Reply With Quote
Old 04-18-2009, 04:33 AM   #31
Joan M
Senior Member
 
Joan M's Avatar
 
Join Date: Oct 2007
Posts: 1,851
Maureen,

It's normal to feel anxious and you have a lot on your plate especially with your children.

Even though you completely trust your onc, you could get a second opinion as well. That might help you in your decision about how long to take Herceptin.

Hugs and peace of mind to you,

Joan
__________________
Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!
Joan M is offline   Reply With Quote
Old 04-24-2009, 11:16 PM   #32
Believe51
Senior Member
 
Believe51's Avatar
 
Join Date: Jun 2007
Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
Posts: 2,999
Thinking about how you are feeling today. Sending you a refreshing bolt of healing thoughts and prayers.>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
Believe51 is offline   Reply With Quote
Old 05-04-2009, 10:53 PM   #33
Believe51
Senior Member
 
Believe51's Avatar
 
Join Date: Jun 2007
Location: RHODE ISLAND (Ed getting me a latte on 2nd Cancerversary Cruise 2008) 'BELIEVE': To accept as true or real, To have faith in, To presume ALWAYS BELIEVE
Posts: 2,999
Hey Maureen, how are you doing? I wanted to let you know that you and the family are in my prayers. Sending healing energy to you and hoping this post finds you well. Please update us with your treatment, I am wondering how 'Maureen' is.>>Believe51
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
Believe51 is offline   Reply With Quote
Old 05-05-2009, 07:04 AM   #34
Vi Schorpp
Senior Member
 
Join Date: Sep 2005
Location: OH
Posts: 385
Hi Maureen

I hope your surgery is behind you this morning. I'm sending good thoughts and wishes for you today and also prayed for your surgeon and everyone involved with your surgery.

Vi
__________________
Diagnosed 4/03/03, age 50
3.5 cm, 0/19 positive nodes
Stage IIA
Her2++, ER & PR++
RB Mastectomy, 4 AC,
Vi Schorpp is offline   Reply With Quote
Old 05-05-2009, 07:58 AM   #35
PetuniaJan
Member
 
PetuniaJan's Avatar
 
Join Date: Mar 2009
Location: Fort McMurray, Alberta
Posts: 13
Sending you loving healing thoughts. My left breast was removed Feb 27 and today May 5 I have full range of motion and a scar that is healing beautifully. Yesterday our 5 year old neighbor said" Can I be bald too? "as he was helping me in my garden. If we can see ourselves through the eyes of a child we will be on our healing way
Take Care
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...:)
PetuniaJan is offline   Reply With Quote
Old 05-05-2009, 09:03 AM   #36
schoolteacher
Senior Member
 
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
Maureen,

Hope you are doing well. Blessings and prayers coming your way.

Amelia
schoolteacher is offline   Reply With Quote
Old 05-05-2009, 12:49 PM   #37
TSund
Senior Member
 
TSund's Avatar
 
Join Date: May 2007
Location: DFW area (TX)
Posts: 431
Maureen,

I'm sorry I've not been on earlier; we live near you and would love to offer support. I scanned your blog (terrific writing!)and think you are having your surgery today and your sisters are here with you? Please shoot me an email when you're up to it and especially when you are alone again.

Ruth had many of the same elements and decisions that you've had, large tumors, pre-surgery chemo, no reconstruction due to post-surgery radiation and other factors. AND Dr. O. is our doctor also and we adore her.

The pic of you and your kids is beautiful. Please don't hesitate to ask for anything.

Terri
__________________
Terri, spouse of Ruth, Dallas/Ft. Worth area
Ruth dx 05/01/07 (age 50) Filipino
multifocal, several tumors .5 -2.5 cm, large area
Breast MRI showed 2 enlarged nodes, not palpable
100%ER+, 95%PR+, HER2+++
6x pre-surgery TCH chemo finished 9/15/7 Dramatic tumor shrinkage
1 year Herceptin till 6/08
MRM 10/11/07, SNB: 0/4 nodes + Path: tumors reduced to only a few "scattered cells"
now 50% ER+, PR- ???
Rads finished 1/16/08
Added Tamoxifen,
Finished Herceptin 05/08
NOW is the time to appreciate life to the fullest.
TSund is offline   Reply With Quote
Old 05-05-2009, 01:17 PM   #38
norwegian
Senior Member
 
Join Date: Jan 2008
Posts: 41
Dear!
Luckily, we cannot cause more cancer by thinking of it. It is a too heavy burden to carry; that it is our own fault if cancer comes back. Then we would feel guilty - like you,- and that is not only unfair, but also wrong.
This is my opinion, anyway.
Love to you!
__________________
Norwegian

Diagnosed Dec 06, tumor 1.3cm. 1/10 node. PR/ER-, Her2+, DCIS, Mascetomy right side. FEC100 x4, Taxol x4, 25 Radiations, Herceptin finished in June 08. Lymphedema right arm
norwegian is offline   Reply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 03:21 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter