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09-04-2008, 07:12 PM
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#1
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Burnt to a crisp..
but doing fine. Hyperthermia isn't all that bad. The worse part is lying in the same position of an hour while the tech. heats up your skin.
I'm sharing the details since someone in our her2 family might benefit from this treatment. Hyperthermia can be used in areas that have already been treated with radiation. It can be used if there is skin involvement or some neck nodes. Also, if a tumor is close to the surface like possibly in the tummy area.
First: regular radiation on the table but at a lower dosage.
Second: A medium sized bag of water attached to the arm of a machine is pressed down on the area that has just been radiated. Utra sounds then go through the water and heat up the skin. You can get restless if the temp. gets too hot or sometimes the bag pressing down on you can get really uncomfortable.
I get treated twice a week. Sorry, that is a really rough description of it.
So far, I am happy with the treatments.
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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09-04-2008, 07:23 PM
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#2
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Senior Member
Join Date: Nov 2007
Location: Connecticut
Posts: 2,077
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Tonya, thanks so much for sharing. You are such a wonderful woman. I hope you know that you are in our thoughts and prayers. I'm praying that your treatments work.
__________________
For Nicola
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09-04-2008, 07:25 PM
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#3
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Senior Member
Join Date: Nov 2004
Posts: 190
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thank you for detailing your experince. We can all benefit from this information.
Kim
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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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09-04-2008, 07:58 PM
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#4
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Senior Member
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,179
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Tonya
I just want to add that I am thinking about you. Make sure you get Silverdene or any other recommended burn creams you can or pure 100% aloe (Fruit of the Earth is one brand). Ask what you can use. After bathing or showering, give yourself enough time to pat dry and then lay on the bed to air dry well.
Are you still on Herceptin or was that postponed too (just wondering how that all worked out).
You are the first person I know of to get radiation treatment this way so you are bringing alot of knowledge to the board.
Rest well. I know you are taking care of yourself.
Gentle hug for now and a bear hug later
__________________
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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09-05-2008, 04:19 AM
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#5
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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I was very burned from my regular radiation, so I think you are very brave to undergo these treatments. Please use the creams and rest. I will keep you in my prayers.
__________________
dx aug 03 invasive dcis 1 cm
er/pr/her2+
bcs 8/4/03
bcs 8/21/03 0/16 nodes
tx 4x ca 36 rad tam
postmenopausal 06 aromasin
sept 07 biopsy node in neck
muga/pet/cat/bone mets to lungs nodes and liver stage iv
tx hki-272
tx not working switched to taxol herceptin
Taxol not working switched to navelbine
navelbine is causing bad neuropathy
starting gemzar
gemzar quit on me now on Ixempra due to increasing number and size of liver mets
another progression starting tykerb/xeloda
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09-05-2008, 12:34 PM
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#6
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Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
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Wow, I never knew that one exisisted. Thanks for the info!
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
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09-05-2008, 02:52 PM
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#7
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Senior Member
Join Date: Oct 2007
Posts: 1,851
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Hi Tonya,
Thanks for sharing your experience of hyperthermia. Although I thnk that it's been around for years, it's been making a comeback lately and they also do it at NYU Medical Center in NYC and Duke University Medical Center in Durham, NC., both major cancer centers. And I'm sure it's done at other centers like the UC system where you are.
I'm glad that you are tolerating the treatments well.
Your in my prayers for a complete recovery.
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!!
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09-05-2008, 03:04 PM
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#8
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Thank you for explaining the tx. I am very hopeful that it will do the trick and keep the mets away.
Gentle Hugs,
Lexi
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09-05-2008, 04:09 PM
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#9
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Tonya, I think this will be the key for you! You're so brave to try something different so that you can get good results! I can't wait to hear the news of your great response! Sending positive thoughts and many prayers, 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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