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04-24-2007, 09:08 AM
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#1
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Need some TLC
Okay friends, I cry as I type. I am a stage 4 single mom of an 8 year old boy and work full time. Sometimes I feel like I just can't keep all of the balls in the air and today is one of them...yesterday, also as a matter of fact. I went through inScanity (a couple of weeks ago) and results were better than expected...so far. Brain MRI (clear),Cervical Spine MRI fine, CT and Bone scans fine. Perhaps some increased activity at T2 (shown on top of Cervical Spine MRI) still waiting to have Thoracic and Lumbar MRIs (scheduled for next week). Liver continues to improve.
What's wrong? Well I have this new little pea size lump just at the bottom of my port incision. Just came up. My CA 15-3 was 200 when we started and went down as low as 12 with Gemzar. Well in the last 3-months it has gone from 20 to 40 to 38 and now 50. That and the little lump on my neck is scaring the sh*&%t out of me. My doctor felt the little lump and said it is not a node. She doesn't know what it is and it is so tiny that she doesn't think it will show on the PET - it didn't on the other tests. Now she she has added a PET scan. She said that we are fine and she want to measure the active disease again. She said that perhaps we just have to switch off of Faslodex and add Lapatinib to the Herceptin. Perhaps not and we just continue with Faslodex and Herceptin depending on the PET and MRI results. She told me to take it easy and tried to convey to me that it is okay.
I know that this is nothing compared to the worry I felt about the Brain MRI and liver results. But these horrifying distinctions are lost on me sometimes. This fear and sadness feels cumulative sometimes. I just want this to GO AWAY. I want to wake up and have this be some really bad dream.
I am physically strong and I know that I should be gratefull for that every day. But, the mind part of this fight is sometimes overwhelming.
Sorry to dump here but this is how I feel right now. Thank you for listening.
Carolyns
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04-24-2007, 09:20 AM
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#2
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Dumping is just one of the things we are here for, Carolyn!
I don't have any wisdom regarding what you are describing, I wish I did. Try and stay distracted as much as you can today... worrying about it will not make it go away, so try not to lose your whole day to worry! Do something that you love and makes you feel calm. Best wishes and lots of love.
__________________
Brenda
NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)
Nov'03~ dX stage 2B
Dec'03~ Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~ Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~ micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~ micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg
Apr'07~ MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~ Started Tykerb/Xeloda, no WBR for now
June'07~ MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~ MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~ PET/CT & MRI show NED
Apr'08~ scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~ MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~ dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~ Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~ new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~ new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~ 25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.
"I would rather be anecdotally alive than statistically dead."
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04-24-2007, 09:25 AM
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#3
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Senior Member
Join Date: Nov 2006
Location: London, England
Posts: 96
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Carolyns,
I'm sorry, I only have a couple of minutes then I have to go, but I just wanted to let you know that I read your message and felt for you. I don't know what to say that would help. Some days are just so horrible, when everything seems dark and frightening.
I know you'll find a way through, and hope you can find someone you can lean on today. I guess that's what we're all doing here, some days more than others.
I don't want to sound flippant, but hang in there, something will come along to help make you feel stronger and better able to face things.
You're in my thoughts - sending a sisterly hug to you
__________________
Caroline
Diag. March 10th 2006, aged 46.
Invasive ductal carcinoma, 2cm + multifocal. Stage 2, Grade 3
HER2+++, ER+/PR+
Right mast. May 2006. 6 of 20 nodes positive
FEC x 4, taxotere x 4; port implanted after 6 cycles
Rads x 25
1 year of Herceptin ended Nov 07.
Arimidex 5 years
Considering reconstruction, maybe soon...
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04-24-2007, 09:31 AM
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#4
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Thank you Caroline and bhutchinson,
It helps so much to hear from you. No one else could understand this feeling but I have to get it out. Thank you for listening and making me feel like I am not alone. I know that this feeling will pass (it has to before my son comes home) and so I can get back to work. But for now I am trying to pull myself together. Thank you for your kind words.
Carolyns
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04-24-2007, 09:50 AM
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#5
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Senior Member
Join Date: Nov 2006
Location: London, England
Posts: 96
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Carolyns,
Was about to close my computer down and dash off, but felt I had to respond to your second message. My own eyes were a bit shiny as I read it. I've longed so many times for this all to be a bad dream - there are times when I genuinely can't believe it's actually happening, and there's this overwhelming horror which I desperately want to escape from, and can't. I find coming here is the best thing in the world when I'm feeling so afraid and alone - like you said, here is where I feel most understood. I'm so thankful for it.
It seems to me that if you can't feel better by the time your little boy comes home, well, then that's how it is, and not surprising. You're only human, and there are bound to be times when it feels just too much to bear for a while. Maybe it'll be a time when you have a cry and big bear hugs together, so neither of you feel you have to pretend for the other that you're feeling brave.
__________________
Caroline
Diag. March 10th 2006, aged 46.
Invasive ductal carcinoma, 2cm + multifocal. Stage 2, Grade 3
HER2+++, ER+/PR+
Right mast. May 2006. 6 of 20 nodes positive
FEC x 4, taxotere x 4; port implanted after 6 cycles
Rads x 25
1 year of Herceptin ended Nov 07.
Arimidex 5 years
Considering reconstruction, maybe soon...
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04-24-2007, 10:59 AM
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#6
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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Dear Carolyns,
I just read your post and I wish I could make it all go away.
Raising our children is difficult enough without having to deal
with breast cancer. It is very diffiuclt not to think of doom
when your spirits are down.
The only thing I can offer is the thought that we never know
what will happen from day to day. Just last week here in the
States a madman shot a campus full students in Virgina. Many
young and beautiful people were gunned down and killed in the
prime of their lives. My point is our life is fragile and we know
best since we fight this nasty hateful disease each day.
Do not give up and feel helpless - please understand that each
day new drugs are being tested. Just look at how herceptin has
changed the entire her2 population of bc patients alone.
Please continue to dig deep in your soul for hope.
Enjoy your son and cherish each day. Please know we are also
here to help lift your spirits. It is not easy - but you are not
alone.
Will keep you in my thoughts and sending you a big hug,
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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04-24-2007, 11:17 AM
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#7
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Senior Member
Join Date: Jul 2005
Location: Ft. Collins, Colorado
Posts: 546
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must be in the air, huh?
I know, I know, I know how you are feeling and I'm so, so sorry 'cause it hurts. And these riduculous, ugly lumps and bumps can really throw us. Maybe I could move to S. Florida (it's really icky here right now) and us single moms could give each other TLC when we need it. I'm really good at it when I'm not miserable.
Let us know how you are feeling and what any tests say and know that you and your son have a lot of love coming at you from every direction. I have an 8 year old girl and she cracks me up. I hope your punkin' will bring you some good old fashioned chuckles too.
__________________
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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