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03-13-2008, 09:32 AM
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#1
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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just checkin' in
Hi everyone, I think about you guys all the time and pray and pray and pray for us all. I think I've started premature inscanity. I have them on the 26th. I just worry too much about when t/x will stop working and what will have to happen next. It is so dumb, but I really don't want to lose my hair again so I keep looking for non-hair loss options. Having been dating someone for only 3 months it concerns me. ANd my kids will be making huge transitions to new schools next year and I just get sad and afraid that I won't be there to help them through that. It is the thinking about the future thing that gets me all jacked up about even having a future with these girls. I did not have them to leave them (I know you all are there with that too). oh man, now I'm crying.
My blood work has been perfect and I have another draw today as it has been 3 weeks. And I'm so grateful for that. I've had this crazy right side pain that has freaked me out for several weeks. The doc and the NP are not worried and I'm pretty sure it is muscle related.
How come when things are going so well I worry the most. I just don't want to give up good things. I left my daughter at her new school for next year this morning to shadow the class she will move into and she had big crocodile tears when I left and then I lost it in the kitchen there all over this woman I know. I felt like an idiot. I can't stand the thought of her facing things without me.
I, like everyone here, just want to show this disease up. I don't want it to take me so early. I just can't help but worry about when the options run out or when my body just says, "Enough!" I mean really how much toxicity can our bodies take? I'm paralyzed by this in that I can't even think of the future in a planning kind of way.
I guess it is just an emotional day and I'm so glad you all are here and i know people are facing bigger challenges than I right now and I don't mean to diminish that or be disrespectful to anyone. It is just where my head is these days.
Thanks for listening. When I sat down to write this I really didn't think that it was going in this direction-sorry, but it must have been needed. I love all of you.
__________________
with love and gratitude,
joy
dx stage I 2/2000*er/pr+; her- per IHC*lumpectomy*4 rounds A/C*30 rads*tamoxifen*dx stage 4 5/2002*huge mets to liver*tiny mets to lungs*stopped tamoxifen*5/02 taxotere/xeloda*her 2 checked with FiSH-her2+++herceptin *2/03 stopped chemo femara w/herceptin*zolodex*04 switched to aromasin w/herceptin*05 high estrogen tx*11/05taxol/carbo*7/06 stopped chemo; megace/herceptin*9/06navelbine/herceptin*5/07tykerb/xeloda great response*4/08 progression in liver; ooph/ faslodex /herceptin
6/08 began Herceptin DM-1
9/08 progression
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03-13-2008, 10:26 AM
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#2
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Senior Member
Join Date: Aug 2006
Location: So California
Posts: 223
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encouragement
Joy:
I always look forward to reading your posts. You are full of life and it jumps out from everything you write. I always celebrate with you, knowing you are enjoying life so much with your children, new boyfriend etc. Of course you get scared and have rough days as well. Please know that I am praying for you. Praying that your scans are good and you continue to enjoy your life the "Joy" way!!
Lisa
__________________
Leslie's Sister (Lisa)
Diagnosed 5/17/06
Left breast Stage II
5 cm. Her2Neu+++, ER-, PR-
1 positive node out of six,
double mastectomy 6/9/06;
TCH started 7/12/06
last chemo 10/25/06
herceptin ended 6-11-07
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03-13-2008, 10:44 AM
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#3
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Senior Member
Join Date: Sep 2005
Posts: 232
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Joy,
Stay strong and always remember that we are all praying for you.
Hugs,
Karen
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03-13-2008, 11:51 AM
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#4
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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A "JOY" filled on this board
Hi Joy,
I'm so happy to "see" you again. I always look forward to your posts....................You are honest............not afraid to let your feelings show..........but STILL............your "JOY" fills your posts.
Oh I understand how you feel when you say "why when things are going well do I worry the most?" Isn't that the truth. I think it's the "waiting for the other shoe to drop" thinking we get caught up in, right?
I'm so happy things are going as well as they are for you. I pray that your scans will be PERFECT and I will ask God for nothing less than PERFECT.
Love to you Joy and asking God for His peace and calm to fill you as you wait.
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
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03-13-2008, 11:54 AM
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#5
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Hi Joy,
I feel you. I am a mom with two young children myself and I am scared also. I think it is good that you can come here and let your feelings out. Don't feel ashamed if you lose it. We are on a very rough road and with young children to raise, it can be very difficult.
Remember that you are very strong. I read your signature and I am amazed by your fighting spirit. I am praying that you may have some peace today.
Hugs,
Tonya
__________________
DX 02/01/07
2.5 cm, Er/Pr-, Her2+++
18/20 Nodes
03/07 CT & Bone scan - Clear
AC x 4, Taxol x 4, Added Herceptin
Radiation until 09/07
Herceptin every 3 weeks until 06/08
01/10/08 local recurrence -IBC
01/28/08 CT & Brain MRI - clear
02/08 - Navelbine & Herceptin
05/08 -MRM
05/08 - Gemzar & Herceptin - didn't work
09/08 - Hyperthermia rads
03/09 - Tykerb/Xeloda
05/10 - Tram flap to fix wound
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03-13-2008, 12:02 PM
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#6
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Senior Member
Join Date: Sep 2006
Posts: 57
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Be strong
Hi Joy,
I have read your posts in the past and they have brought me so much happiness. I hate to see you so upset, but I can certainly empathize. I too have school aged children, I too am stage IV and I too feel overwhelmed at times. I feel such envy for those of us who got to see their children grown, married, graduated ...whatever. However, I also hold on every day as I know you do to the hope we will see those milestones and more. Every day as we wake up someone somewhere is working for our cure. Every day we read of their positive developments as they inch closer to our miracle. We have to do our job to stay strong while we wait. Just remember you are never alone in this. We are all here for you and our sisters. Hope it helps.
Missy
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03-13-2008, 07:04 PM
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#7
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Senior Member
Join Date: Sep 2005
Location: South Dakota.
Posts: 621
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Joy, why not try putting on one of the heat type patches to see if that lessens the pain any. I often do that with my aches and pains. I always keep those patches on hand, in various sizes.
Stay strong. You're doing great. Saying a prayer for you...
__________________
Blessings and Peace,
Barbara
DX Oct 02 @ age 52 Stage 2B Grade 3 Mastectomy
"at least" 4.5 cm IDC 1+node ER+61% /PR-
Assiciated Intraductual component with Comedo Necrosis
Her2+ FISH8.6 IHC 2+
5 1/2 CEF Arimidex
Celebrex 400mg daily for 13 months
Prophylactic mastectomy
Estradiol #: 13
PTEN positive, "late" Herceptin (26 months after chemo)
Oct 05: Actonel for osteopenia from Arimidex.
May 08: Replaced Actonel with Zometa . Taking every 6
months.
Accepting the gift of life, I give thanks for it and live it in fullness.
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03-13-2008, 07:27 PM
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#8
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Senior Member
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
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Joy,
If you can't "let it all hang out" here, then where? Nobody else can understand like the people here. When you get your wonderful news on scans, calm will once again descend and life will be peaceful once again---until scan time. Unfortunately, it seems to go with the territory.
You are in my thoughts and prayers.
__________________
Rhonda (Sassy)
dx age 45
DX 2/15/05 Stage IIb (at surgery)restaged IIIa
Left mast .9cm tumor 5 of 14 nodes
Triple Positive
4 DD A/C
12 Taxol/Herceptin
33Rads
Strange infect mast site one year aft surg, hosp 1 wk
Herceptin for total of 18 months
Lupron Monthly 4 yrs
Neurontin for aches, pains and hot flashes(It works!)
Ovaries removed 11/09 stop Lupron and Neurontin
Arimidex 6 yrs (tried Femara, no SE improvement)
Tried Exemestane-hips got so bad could hardly walk
Back to Arimidex for year seven
Zometa 2X Annual for 7years, Lasix
Stop Arimidex 5/13
Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa
5/14 Start Tamoxifen
3/15 Stem cell transplant to stimulate femur bone growth/healing
5/15 Complete fracture of right femur/Titanium rods both femurs
9/16 Start Evista stopTamoxifen
3/17 Stop Evista--unwelcome side effects!
NED and no meds.......
14 YEARS NED!
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03-13-2008, 10:05 PM
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#9
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Senior Member
Join Date: Sep 2005
Location: Ontario, Canada
Posts: 752
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Joy;
I understand exactly how you feel....and I am a single parent with grown children. It just shows that there is always lots to live for. My own parents are 89 and 87....very healthy, happy and mentally sound. I feel that even at my age I count on the support and love I receive from them. I worry about my children still and my parents of course worry about me. So....it never ends. I have learned to never look into the future without the company of an optomist. I always try to remember that many promenant researchers have said that within 10 years this will not be a disease that kills. So...all you have to do is live. Time will take care of us all. We just have to last it out and survive....and you will Joy....you really will.
Cathy
__________________
Cathy
Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18
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03-14-2008, 05:22 AM
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#10
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Senior Member
Join Date: Nov 2004
Posts: 190
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Joy,
I am just glad to see that you are dating!!!!!! It's hard enough to date without cancer.
I think you listed a lot of reasons to hold on for the cure. You have seen all the progress that has been made with this disease. Hold on for the cure!!!!!!
Kim
__________________
8/98 dx right breast
5/2003 tram flap right breast
8/2004 dx new primary left breast with inflammatory bc
er/pr-, her2neu+++
8/19 taxotere and herceptin
1/15/2005 Navelbine/Herceptin
4/2005 radiation and Herceptin
5/15/2005 Herceptin alone
2/12/2008 skin biopsy positive
2/14/2008 met to sternum, possibly right breast
2/27/08 Start omitarg, herceptin, taxotere trial
3/17/08 Kicked off trial because I started too close to my last herceptin
3/19 start tykerb xeloda
Right breast confirmed met
5/15/08 skin mets gone, no hypermetabolic activity in breast, sternum healing
8/24/08 scans still look good. sternum still active with scarring. No evidence of progression
10/08 Progression in sternum
12/08 Start TDM1 trial
1/09 Scans show stable
12/09 1 year on TDM1 still stable
10/10 progression in chest and liver
11/10 false positive of liver mets; tykerb and herceptin
4/11 Tykerb/Herceptin/Xgeva
4/11 Rads to Sternum
5/12/12 NED Herceptin/Zometa
3/16/19 still NED Herceptin/Zometa very 6months
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03-14-2008, 05:26 AM
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#11
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Senior Member
Join Date: Sep 2005
Posts: 589
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Joy,
I understand your fears and am sorry that you and so many others have to go through it. I think the key is to know that your fears are normal but they don't have to control you. I remember a saying I read on this site (please excuse me if I don't get it exactly right)...."cancer may be able to control how long I live but it can't control HOW I live". Easier said than done but try and remember that you have more power than you probably feel.
Enjoy your relationship and your kids!
Eric
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03-14-2008, 06:43 AM
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#12
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Senior Member
Join Date: Oct 2007
Location: Australia
Posts: 309
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Dear Joy - thank you so much for having the courage to share how you are feeling. I have the same concerns about being around for my bubbas as they grow. They are such gifts.
I hope you get good news on your scans Joy. I know I felt some relief when my catsan I had this week came back clear. And even though the cancer is still in my bones - at least it is under some control. It all means extra time with my babies.
All those precious moments. I hope and pray you and your children still have many more to come! All the best.
Blessings
Hermiracles.
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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03-14-2008, 06:43 AM
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#13
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Senior Member
Join Date: Oct 2006
Location: I live in Christmas, MI - located on the shores of Lake Superior.
Posts: 606
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Joy,
I sure can understand your fears....had a friend tell me not to be a worry wart, but I know it is hard. Just keep trying to stay positive.
I also always look forward to your posts. It is nice to hear that you are dating.
I wish you great scan results.
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03-14-2008, 06:55 AM
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#14
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Senior Member
Join Date: Aug 2006
Posts: 3,380
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Joy,
I don't think anyone here is unfamiliar with what you are describing. I am also reticent to plan more than 6 months ahead. This disease is much more about mental strength than physical endurance, something I never understood until it happened to me. Nothing is more awful than to have your future taken away. I, too, often find I am afraid to "let" myself feel too happy, because I can't bear the thought of having that happiness taken away again.
We just need to adapt to living in the moment as best we can, especially when scan and blood test times come around. Much easier said than done, but no use to start mourning in advance when you don't know what the outcome will be - it is a poor use of a perfectly good "present" (as in, "the present tense").
Best of luck to you with your upcoming scans. I'll look forward to your post letting us know how you do.
Hopeful
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