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Tonya98 View Drop Down
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    Posted: Jul 05 2014 at 2:49pm
I really hate to complain but here goes. I have been on the iniparib trial for close to four years. It has amazingly kept me stable but I am pretty tired after all these years. Physically I do fine but emotionally it is hard for me. I am at the clinic close to four days a week. Two days for treatment and the other two days for blood work and neupogen shots. I absolutely love my week off but get very depressed right before treatment begins again. I know I should be happy. I really wish I could stop but at the same time scared to stop. I don't really know how many options I have left.  I have a 16 and 12 year old so I really don't have a choice in the matter. Anyways, just needed to get this out. Those around me don't quite understand but I knew those of you here would.
 
 
2/1/07 -IDC 2.5cm node positive her2+ ACT&herceptin.

1/8/08 recurrence to skin -triple negative. 07/23/10 -chest wall. Parp trial 9/10 - present. Iniparib ending November 2015 Stable 9/19/2016
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sue View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote sue Quote  Post ReplyReply Direct Link To This Post Posted: Jul 05 2014 at 5:09pm
Dear Tonya98,

Though I have not been through what you have been dealing with, I am sure others here will answer soon. I hope you will continue to reach out here whenever you feel the need, no matter what the circumstances are, knowing we are here to listen and support you. Just wanted you to know you are in my thoughts. Hoping you will find some comfort very soon.

Love and Peace,
Sue
Dx 7/10, age 53. TNBC left breast, stage I, grade 3, IDC 0.5 cm, DCI 2.5 cm, 0/8 lymph nodes neg. BRCA-. T/C x4 finished 2/09/11, rads x34 finished 4/21/11.          
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jul 05 2014 at 7:30pm
Tonya,

Sending you a hug! Four years is a long time and it's understandable you get depressed. Four days a week at the clinic is grueling, but we know the options are limited. We understand and this is a good place to come and vent. Sometimes just getting the words out makes you feel better.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jul 06 2014 at 3:16pm
Dear Tonya,

I, like Sue, have not had the experience that you have had. I am so sorry you are having to face this every other week. 4 1/2 years is a long time, but I'm so thankful you have an option that is working for you.

I know that if I were in your shoes, I would get weary of it all too. BUT, I will pray that Our Heavenly Father will give you a new lease on life. That you will find the strength and confidence to face the days with HOPE... None of us know when we will be in your shoes, but we all know that we could be. So that is why I say, rant, get it off your chest and then go on..... WE UNDERSTAND.

Love and God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jul 07 2014 at 6:34pm
Tonya,

I just wanted to send you a big hug too.  Of course you are exhausted after four years of this! - anyone would be.   Could you take a little treatment holiday - at least the more cytotoxic components of the treatment?    Maybe the summer off?  It sounds like you could really use it.

Love,
Denise

DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Tonya98 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tonya98 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2014 at 12:45pm
Thank you for the hugs and encouraging words. My oncologist is refusing to make any changes to my treatment plan.  I understand where she is coming from although I really could use a break. I keep hoping that I'll be able to hang in there until treatments become more effective and less harsh. That is my wish for all of us.
It's my week off so I am going to try and not think about cancer for the next seven days. Very difficult but I have plans with the kiddos so hopefully I'll be distracted.
2/1/07 -IDC 2.5cm node positive her2+ ACT&herceptin.

1/8/08 recurrence to skin -triple negative. 07/23/10 -chest wall. Parp trial 9/10 - present. Iniparib ending November 2015 Stable 9/19/2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote bottkota Quote  Post ReplyReply Direct Link To This Post Posted: Jul 14 2014 at 6:38pm
Oh how I remember those days. I know how you feel. I am so happy the treatment is still working just sorry you feel crummy. Treat yourself good this week and enjoy the off time! Sending big (((HUGS))) your way!

Cathi
Stg 2A 4/2005 TN IDC
Stg 4 11/2009 TN
11/09-09/10Gem/Abrax/Avastin
11/10-12/12 Gem/Carbo/Inipirib
01/13-09/13 Iniparib alone
09/13-03/14 Gemzar/carbo
04/14-present veliparib (PARP)
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Post Options Post Options   Thanks (0) Thanks(0)   Quote btstark2003 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 07 2014 at 2:00pm
Hi Tonya,

Hope you are still doing well physically, and that you are finding some inspiration from somewhere (those precious kids!) to keep your hope and positivity alive.  

This is indeed a long hard slog, and I sometimes still can't believe that this is my life!  Living with stage 4 TNBC every day, likely for the rest of my life.  And so I just keep reminding myself that at least I have a life.  My kids are about the same ages as yours, and they need me.  And I can't imagine how my parents would cope if I die before them.  And I make a point to fill my life with lots of joyful people and events, and so I am able to keep going.  When it all seems like too much, I say a little prayer and just tell God that I need help and that I need to turn the burden over to him.  And then it always feels lighter for a while and I have some peace.  Lately I have been feeling a little overwhelmed again, worried about the coughing that seems to get worse and hoping it's not a sign that the lung mets are progressing, or that I am getting some infection or something in my compromised lungs.

I never had a treatment that required me to go the hospital 4 times a week - I thought 2 days a week (about 10 hours total) when I was on the PI3K/Taxol trial was a lot!  I only did that for 5-6 months before I developed a dangerous immune response and had to stop.  It knocked the lung mets down for a while, but they came back 5 months later.  Then I was in a study at univ of Chicago medical and travelled there for about 4 hrs at the hospital once every 2 weeks.  That wasn't too bad.  But I was only able to stay on that study for 5 months before I had some progression and got booted out.  So now I am on Xeloda, and I am grateful that it is so easy (just take pills every day for a week, then a week off), but I don't know if it's going to be enough to shrink these lung mets.  They were relatively stable after the first 2 months, so maybe we will see some regression when I have the next CT scan.

The only other suggestion that I have is to look for the gifts that the cancer has brought to your life.  I hope that statement doesn't make you want to punch me, but if you look, there will be some.  In my case, I have made many new friends, many of my relationships are deeper and richer, my work (at Pfizer) has more meaning for me, I found a firm belief in God again, I have been able to help some other people who have cancer, and I think I am a better and happier person. I hope I am a better mother.

Love and peace,
Beth  
2008 Stg1 TNBC, LX, FEC+T, rads
2010 2.5cm tumor BRCA-, BMX,CMF
2011 LN mets, Gem/Carbo, surgery, rads
2012 lung mets, PI3Ki/taxo
2013 anti-PD-1
2014/15 Xeloda, IMMU-132, eribulin
Aug 2015 Keytruda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote lmloya Quote  Post ReplyReply Direct Link To This Post Posted: Aug 11 2014 at 8:56pm
Dear Tonya98,
So sorry to hear of your struggle. Good news is you are able to continue to live some life with your family. I too have been battling this for 3 years in and out of treatment. It does truly wear you down. Like you, I wonder can I keep doing this long term. Some days I know I can, others I am not sure. Take one day at a time.

I pray you find the strength to continue your journey for your children. I too have two young daughters 6 and 9. They are what keep me going and many times the only reason I continue the rat race. I would continue to check for an extra break, even if it is just one week. Maybe plan a trip during an off week to have something to look forward to.

All my best to you. I will continue to pray for your strength.
12/10,11 cm mass TNBC, BRACA-, Gr3, TAC pCR, Lumpty {NED 6/11}
7/12 Skin Mets Carbo/Gem pCR
12/12 Dbl Mst
8/13 local skin mets Ixebipeline pCR. Hyperthermia Rad
5/14 skin mets Eribuline
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Tonya98 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tonya98 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 14 2014 at 12:24pm
I so appreciate all your words of encouragement.  They mean so much coming from people who truly understand this disease.  I had a little vacation with the family and it was wonderful. I rarely thought about the cancer and felt really good. We made some great memories.
Back at treatment this week and a scan next week. I am a little worried about an area of scar tissue on my stomach where surgery was done. There has been an small area of concern but it has never been biopsied. It remained stable so we didn't worry.  I also have a hernia in that area. Now the area feels hard so I'm anxious to see what the scan says.
Either way, I am resolved to be here for the kids as long as I can. I am so thankful to have a place to share my highs and lows with all of you.
2/1/07 -IDC 2.5cm node positive her2+ ACT&herceptin.

1/8/08 recurrence to skin -triple negative. 07/23/10 -chest wall. Parp trial 9/10 - present. Iniparib ending November 2015 Stable 9/19/2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Aug 14 2014 at 12:58pm
Hello Tonya98,
I am sorry you are having to worry so much. I do know that hernia's can feel hard. I pray that the hernia will be the fixable.
I am so happy that you had a happy time with family. Making memories are some of the best times ever.
I am praying for you to have no bad results from your CT.

Love and God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote RosePenny Quote  Post ReplyReply Direct Link To This Post Posted: Aug 18 2014 at 8:55am
I understand how you are feeling, and it is hard. I haven't been on any chemo treatments yet for my stage 4, other than surgery, but when I started this journey (stage 3a out of the gate),  I was on chemo; it was awful. I was on the week on, week off regiment for 6 months, with a neupogin shot every day for 7 days after my chemo...So I felt like every week there was something to dread..I found the shots very painful. Chemo effects were also bad. 
Hang in there, four years is a long time but look at your kids and try to find as many moments of joy you can. I try to be grateful every day I wake up..not easy to do but I try!
Wish I could make it easier for you, you have every right to complain and certainly this is the place to vent your feelings...Go ahead!


hugs Rose
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Post Options Post Options   Thanks (0) Thanks(0)   Quote katrinaS Quote  Post ReplyReply Direct Link To This Post Posted: Aug 19 2014 at 4:22pm
Hi Tonya,
It is hard to be on treatment for so long.  At least it has worked for you for many years.  The thing that came to my mind is for you to try to get the neupogen shots at home (it might free up one day a week for you).  I have actually given neupogen shots to myself and found it easy - they come in prefilled syringes with needles.  They do need to be refrigerated.  All I can say is hang in there. 
Katrina
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tonya98 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2014 at 11:11am
This morning I will get a CT scan and a biopsy on the area of my stomach that feels hard.  My oncologist felt it and wasn't too alarmed.  I should know result of the scan later today. 
2/1/07 -IDC 2.5cm node positive her2+ ACT&herceptin.

1/8/08 recurrence to skin -triple negative. 07/23/10 -chest wall. Parp trial 9/10 - present. Iniparib ending November 2015 Stable 9/19/2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 20 2014 at 6:42pm
Tonya,

Fingers crossed you get good news on your scan results.

Hugs,
Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Tonya98 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2014 at 9:57pm
Finally heard from the trial nurse today. The scan looked stable other then the area on my stomach which I had pointed out to the doctor.  It grew slightly. I was already scheduled for a biopsy the same day as the scan.  Today I got the news that the biopsy is negative. Just scar and fatty tissue so I stay on Carbo, gem and iniparib.   As much as I complain about this drug combo, I'm relieved that I did not have progression. Trying really hard to be here for my daughter's high school graduation. She starts her junior year on Wednesday.  So I guess I will sleep well tonight.
 
 
2/1/07 -IDC 2.5cm node positive her2+ ACT&herceptin.

1/8/08 recurrence to skin -triple negative. 07/23/10 -chest wall. Parp trial 9/10 - present. Iniparib ending November 2015 Stable 9/19/2016
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2014 at 10:28pm
Tonya,

Great news!  I know it's a struggle, but keep going.  Sleep well!

Hugs,
Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote RosePenny Quote  Post ReplyReply Direct Link To This Post Posted: Aug 26 2014 at 1:38pm
Tonya,
I am really happy for you! Celebrate that you are going in the right direction. 

Hug your kids and feel good today

hugs Rose
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Post Options Post Options   Thanks (0) Thanks(0)   Quote MomMom44 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 26 2014 at 2:54pm
Wonderful news Tonya! Celebrate!!
DX TNBC 1/14; age 66; Stage 1; Grade 2; 1.2 cm; 0/2 nodes; lumpectomy; BRAC Neg; 4 DD AC; Completed 12 weekly Taxol July 2014; Radiation August 2014
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Aug 26 2014 at 10:19pm
Dear Tonya,
What wonderful news. We can find the blessings in news that others would scoff at, can't we? How about looking forward to your daughters college graduation. Sleep well my friend.

Love and God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2018-12 yrs NED
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