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08-31-2012, 12:21 PM
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#1
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Oh yeah, and about that bad leg...
Hi all,*
I never posted news about the MK2206 trial running out of steam for me, nor about the persistent leg injury (torn muscle/tendon in leg which over the past weeks, and past few days has grown increasingly alarming.
The trial failure, Perjeta issue and interim plans were to be the main topics of discussion at my office visit with Dr Rugo yesterday morning.
So the NP and Dr Rugo took one look at my leg and the acute issue is that, whether it is a blood clot (now ruled out) or an infection around the injury. Either thing lands me in the hospital with an IV drip. *Now we know it's an antibiotic to,hopefully fight the infections, plus a unit of blood just for kicks.*
Well the day took a major turn and has now ended up as a Labor Day weekend at the always luxurious UCSF Parnassas hospital! *Actually, this is the best place for me to be, one of the best hospitals in California.
I just hope I don't have to listen to a timeshare presentation. *
But it's probably a several day ( or more) stay.
I believe this is a blessing, not *even disguised. *I knew there was something terribly wrong with the leg; now I feel there is a competent team looking at it from all the necessary angles...or maybe angels. * No way I could have pulled that together. *
I am an interesting and unusual case (go figure!) and have already had 6 doctors/surgeons looking at it trying to figure out what to do. *More on the way, too. They are trying to decide whether or not do do surgery to clean out some of the fluid/blood/infection. And have me NPO which is Latin for no putting anything in your mouth.
So i hope they decide soon, although the surgery sounds scary and painful, too.
I've recently relearned from a dear friend how powerful prayer can be...so am boldly asking for as many as can be floated out there...
Thanks for the love, my friends
__________________
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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08-31-2012, 12:41 PM
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#2
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Senior Member
Join Date: Jul 2010
Location: South Jersey
Posts: 516
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Re: Oh yeah, and about that bad leg...
Prayers, prayers, prayers....
__________________
...but he said to me, “My grace is sufficient for you, for power is made perfect in weakness.” I will rather boast most gladly of my weaknesses, in order that the power of Christ may dwell with me. (2 Corinthians 12:9)
Penny
July 2010 IDC grade 3 stage 3 er-/pr-/her2+++, BRCA2
Skin mets 11/10
1/12/11 Surgery path - complete response
Rads 2/11-4/11
Liver mets 11/11 now stage IV
Xeloda & Tykerb 12/11
Allergic reaction to Tykerb 12/11
Xeloda only 12/11
Added herceptin January 2012
Progression February 2012.
Started Veliparib (parp inhibitor) trial 3/5/12.
4/30/12 Liver met shrunk in half! Praise Jesus!
6/18/12 another 25% shrinkage, down to @3x3. Thank you, God!
8/8/12 Brain MRI - clear! Praise to You, Lord Jesus Christ!
8/27/12 Thank You, God - another 20% decrease in liver met! Now @ 3.2x1.9.
10/5/12 stable-ish
11/21/12 allergic reaction to carboplatin
12/10/12 stable & progression
12/31/12 liver ablation
2/6/13 ablation successful but new tiny mets in liver. May or not be cancer.
Another ablation scheduled 2/28/13. Cancelled.
2/20/13 started taxotere & herceptin. Pretty toxic. Oncologist says start tdm1 4/3/13. From her lips to God's ears. Praying for no allergic reactions/adverse side effects.
3/28/13 increase in liver mets - number & size
4/3/13 started TDM1
6/25/13 Praise God! Scan shows only one viable lesion and it's smaller.
10/8/13 MRI shows 1 large and two small tumors.
10/11/13 Ablation of tumors. It's in God's Hands.
10/23/13 Jesus and TDM1
12/19/13 Started trial of palbociclib & herceptin after scan showed growth of liver tumor and a questionable spot on rib.
2/6/14 CT scan - previous suspicious spot on rib probably damage from radiation - Praise God! MRI - over 200% growth in cancer in liver.
2/19/14 started Navelbine, Perjeta, & Herceptin combo.
5/2-5/4/14 hospitalized with very high liver function numbers, plus skin and eyes are yellow, plus urine is orange. Feel ok, so doctor not sure if liver failing due to cancer, chemo, or infection. Hospital gets numbers to go down and sends me home. MRI done in hospital reveals cancer shrinking - praise God!
5/6/14 - 5/8/14 hospitalized with no white blood cell count. Released when they go back up, @ 6 days after doctor gave me a neulasta shot.
5/16/14 - informed blood cultures done in hospital are back and that I contracted hepatitis e. Have to take ribavirin (anti-hep med) until liver function numbers are back to "normal" before re-starting chemo. Will probably go on veliparib and temodar this time.
5/26/14 - my birthday - GI doctor informed me that the hepatitis e was completely gone - I didn't even need the anti-viral meds! This is a miracle from God!
5/28/14 - started veliparib and temodar (compassionate use)
8/18/14 MRI shows 90% growth in liver tumors
8/20/14 start Perjeta, Herceptin, & Navelbine. Thanking & giving Glory to God for each moment.
9/22/14 - 9/24/14 Hospitalized with 102.2 fever and neutropenia
11/13/14 ER for high fever and fast heart rate. Got both down with IV antibiotic and fluids. Sent home same night. Thank You, Lord!
12/2/14 MRI shows progression in liver. Grateful to God that I still feel good.
12/11/14 Simulated SIR-spheres. Successful. Real thing (1st lobe) scheduled for the 23rd. Also starting Xeloda on 22nd for 2 weeks because it's synergistic with the spheres.
12/23/14 SIR-spheres in left lobe of liver. On Xeloda 12/22/14 - 1/4/15.
1/7/15 Receiving Perjeta & Herceptin while awaiting next course of action.
2/9/15 SIR-spheres in right lobe of liver. On Xeloda for 2 weeks (started 2/8). Still on Perjeta & Herceptin. Don't know what's next for me. :-)
3/25/15 Final read on MRI report - there are new and multiple lesions in both lobes of liver. Sigh. Praise God I've made it this far!
4/1/15 Started Gemzar & Herceptin. 1st week G&H, 2nd week G only, 3rd week off. Thank You, Lord, for this option.
4/15/15 Labcorp - liver enzymes in 200's. Appointment 4/22 with oncologist to discuss. Also, "radiation recall" in previously treated area? Very itchy. Need to discuss.
4/22/15 Enzymes came down. Received reduced dose of Gemzar only. No herceptin. Will get labs at lapcorp next two weeks since taking break for vacation purposes. Treat radiation area.
5/9/15 ER for severe abdominal pain. Constipation. Sent home with meds and advice to follow up with oncologist regarding jaundice and bilirubin.
5/11/15 Hospitalized for rising bilirubin and jaundice. CT scan reveals larger and more constricting tumors in liver.
5/13/15 Met with my oncologist. Bilirubin came down. If still down by Monday, I'll get chemo. If not, than I guess I'll see you all in Heaven. Praise God. Please pray, pray, pray.
5/18/15 Bilirubin jumped up. Trying lowered dose of Ixempra, with Herceptin. Oncologist is surprised that I'm functioning so well, given the high bilirubin. I have anywhere from 2 weeks - 2 months to live.
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08-31-2012, 12:50 PM
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#3
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Senior Member
Join Date: Oct 2005
Posts: 215
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Re: Oh yeah, and about that bad leg...
Prayers coming your way Chrisy, jeanette
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08-31-2012, 01:02 PM
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#4
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Senior Member
Join Date: Jun 2007
Posts: 2,210
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Re: Oh yeah, and about that bad leg...
You have already paid more than enough for the Timeshare!! Seems like you might have signed up for a few. That happens when you get carried away.
Seriously, I am sorry to hear where you find yourself but glad that it is giving you comfort. It IS good to know that something is being done.
Keep the faith.
__________________
Bonnie
Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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08-31-2012, 01:35 PM
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#5
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Senior Member
Join Date: Jan 2007
Location: Thornhill, Ontario
Canada
Posts: 2,320
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Re: Oh yeah, and about that bad leg...
Sending you lots of hugs and prayers from Canada Chrisy.
Hope those docs can figure everything out for you!
all the best
caya
__________________
ER90%+/PR 50%+/HER 2+
1.7 cm and 1.0 cm.
Stage 1, grade 2, Node Negative (16 nodes tested)
MRM Dec.18/06
3 x FEC, 3 x Taxotere
Herceptin - every 3 weeks for a year, finished May 8/08
Tamoxifen - 2 1/2 years
Femara - Jan. 1, 2010 - July 18, 2012
BRCA1/BRCA2 Negative
Dignosed 10/16/06, age 48 , premenopausal
Mild lymphedema diagnosed June 2009 - breast surgeon and lymph. therapist think it's completely reversible - hope so.
Reclast infusion January 2012
Oopherectomy October 2013
15 Years NED!!
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08-31-2012, 01:35 PM
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#6
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Senior Member
Join Date: Mar 2006
Posts: 4,778
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Re: Oh yeah, and about that bad leg...
Have you (before this even if the past few months/year) been given an antibiotic that ends in floxin or floxicillin? They have been known to predispose those taking them (even one dose) to tendon ruptures including biceps tendons, Achilles tendons, posterior tibialis tendons)
Are they planning an MRI or just ultrasound on your leg? The former would show a lot more from what I understand.
Hope this helps everyone get on board ie, doctors from lots of disciplines helping you get your perjeta.
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08-31-2012, 02:01 PM
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#7
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Senior Member
Join Date: Oct 2011
Posts: 59
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Re: Oh yeah, and about that bad leg...
lots of prayers coming your way. You are one of my inspirations on this board and I'm sure you will continue to be so.
__________________
9/11 - dx 3 mnths after giving birth to my 2nd child. (not a clogged milk duct) ER/PR- HER2+++
10/11 - Initially staged at 2b after unilateral mastectomy
11/11 - CT scan 4 weeks later found spots on bones and liver (crap!) Stage 4
12/11 - starting TCH
5/12 - STABLE. stoping TCH after 6 months and continuing Herceptin with Tykerb and Xgeva
8/12 - STABLE, but I'm calling it NED because all they see is bone scaring!
11/12 - STABLE
2/13 - STABLE
6/13 - STABLE
9/13 - STABLE
12/13 - STABLE
3/14 - STABLE
6/14 - STABLE
9/14 - STABLE
12/14 - STABLE
...Continue Herceptin and daily Tykerb and scans every 4 months
1/16 - STABLE
11/18 - Five level spinal fusion from collapsing vertebrae due to spinal Mets/radiation
12/19 - STABLE
Mom to Audrey (12 yrs) and Hudson (8)
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08-31-2012, 02:14 PM
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#8
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Senior Member
Join Date: Oct 2009
Posts: 46
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Re: Oh yeah, and about that bad leg...
Hey Chrisy,
I am sure you had better plans for the three day weekend.
If you need anything over the weekend, please let me know. I live in San Francisco, and could bring over food (when you are not NPO), reading materials, or whatever else you could use from the "outside." I will check this thread, and also my private messages, over the weekend. I know you didn't pack an overnight bag for your Thursday appointment.
Best,
JB
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08-31-2012, 02:32 PM
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#9
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Senior Member
Join Date: Apr 2008
Posts: 1,477
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Re: Oh yeah, and about that bad leg...
Prayers are coming your way.
Please hang in there and be the toughie you are.
K
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08-31-2012, 02:41 PM
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#10
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Re: Oh yeah, and about that bad leg...
Thoughts and best wishes for you always.
__________________
Kind regards
Becky
Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia
NED 18 years!
Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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08-31-2012, 03:20 PM
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#11
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Senior Member
Join Date: Apr 2011
Location: Michigan
Posts: 1,173
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Re: Oh yeah, and about that bad leg...
More prayers coming. Gods blessings to you. Please keep us posted. feel free to chime in as often as you like. You know someone is always on here!
__________________
dx 11/12/09 IDCI
Stage 3a
ER 98% PR 80%
Her2 +3
4/12 nodes
6 rounds TCH
Herceptin 12 months 3weeks
Rad. 30 tx
Tamoxifin 6 months stopped
Arimedex stopped 9/12 (side effects)
Aromasin 10/12
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08-31-2012, 04:22 PM
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#12
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Re: Oh yeah, and about that bad leg...
It's so easy to pray for you, Chris! I'll even add a footnote prayer about the time share people. Although, one might be a past life insurance agent who knows the ropes. Tons of prayers and love I send. ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
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08-31-2012, 05:42 PM
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#13
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Senior Member
Join Date: Jul 2006
Posts: 869
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Re: Oh yeah, and about that bad leg...
Chrissy, If you go for the timeshare, be sure to buy on the secondary market, not brand new like we did!!! Although, I loved every moment of having one...that was before BC, oh well. Seriously though, I am counting on a full recovery for the leg issue and a successful treatment option for you. Sincerely, Ceesun
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08-31-2012, 06:08 PM
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#14
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Re: Oh yeah, and about that bad leg...
Timeshare, shmimeshare. I (or maybe the insurance co) could have paid for the Perjeta by the time I get out of here. Insurance karma maybe.
Lani - you are on point. Prior the the initial muscle, tendon tear no such antibiotics. I did a short course of cipro in June and was a bit freaked by that side effect
The acute issue right noe is excessive bleeding and now abscess, which has to be drained tomorrow morning.
But yes, I will be demanding an MRI, I'm not buyin it's the same injury without proof.
In a way tho it doesn't matter in terms of treatment but it does impact Phys therapy so we need to know.
Will be busy tomorrow!
__________________
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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08-31-2012, 06:32 PM
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#15
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Senior Member
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,128
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Re: Oh yeah, and about that bad leg...
Well, Chris, you are in OUR version of a "timeshare." Just that it is the kind where we want to spend as little of our time there as possible! And the daily rate is sky high ...
I am glad you are being put under watch, as I have a friend whose hubby almost died from a little scratch on his leg that ballooned up and he was then transported from his work to the hospital within TWO hours of getting to work.
You just need to make sure that everyone who touches you is as sterile as possible. Prayers now directed toward that leg problem.
__________________
"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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08-31-2012, 06:42 PM
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#16
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Senior Member
Join Date: Apr 2011
Location: Port Hedland, Australia
Posts: 382
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Re: Oh yeah, and about that bad leg...
Lots of prayers wishes and anything else that could possibly help!
Jenny
__________________
Diagnosed Nov '10 IDC whilst pregnant with 2nd child
Her 2 ++ ER/PR + but weak and patchy 50% + 5%
Left mastectomy Dec '10, 6cm tumour 1 of 2 lymph (micro mets)
Clear margins but lymphovasculer invasion
Stage 3a Grade 3
Fec 100 x 3 Jan '11 Taxotere X 3 and Herceptin X 1yr
Staging scans - CT brain & body and bone - May '11 - NED!!
Start Femara - in chemo induced menapause
25 Rads June '11
Dec '11 Menstruation resumed - zoladex inj monthly and Tamoxifen
Feb '12 Back on Femera and Zoladex
March '12 CT brain & body & bone scan all clear
Zometa x2/yearly
April '12 - Oopherectomy
Praying the Herceptin is as good as its hype!!
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08-31-2012, 07:28 PM
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#17
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Re: Oh yeah, and about that bad leg...
Lifting you up in prayer Chrisy! Love and hugs.
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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08-31-2012, 07:47 PM
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#18
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Senior Member
Join Date: Jul 2006
Posts: 463
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Re: Oh yeah, and about that bad leg...
Oh my, Chris!
I will take the good news first, that you are at UCSF and that many experts are taking an interest in solving your mysteries. Yay!
But dang! NPO, surgery worries, probably "some" pain that you neglected to mention, etc. I hear you and/or read between the lines on all of that, too -- and send lots of good and healing thoughts, and love.
Debbie Laxague
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08-31-2012, 07:55 PM
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#19
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Senior Member
Join Date: Apr 2011
Posts: 44
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Re: Oh yeah, and about that bad leg...
Hi Chrisy
I've been following your posts quietly over the years (they're a great motivation to me,thanks!) but just felt that it's now time to pop in to offer my support.
Sorry to hear about the Pertuzumab and this additional side-track. Hope you'll get back on your feet soon and get that killer Pertuzumab combo!
I've got a prayer team behind me too, so yes, prayers are on the way for you! Take care
Rgds
Catherine
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08-31-2012, 08:48 PM
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#20
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Member
Join Date: Mar 2012
Posts: 19
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Re: Oh yeah, and about that bad leg...
Dr. Rugo is supposed to be one of if not "the" best- and her first name, Hope, is what we all have for you- plus all the prayers in our hearts.
Good luck and keep us posted if you can- hang on tight,
turtle.
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