HonCode

Go Back   HER2 Support Group Forums > her2group
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Reply
 
Thread Tools Display Modes
Old 08-10-2012, 05:26 PM   #1
NEDenise
Senior Member
 
NEDenise's Avatar
 
Join Date: Aug 2011
Location: Philly Suburbs
Posts: 1,709
Smile Gammaknife Managed....check!

Hi all!
I'm home! And except for a headache where the "helmet" was screwed into my head...I feel just fine!

I hope none of you ever need to have Gammaknife (or any other knife for that matter)...but if you do...it's really not bad at all. In fact...you can request to be sedated for most of it...so it's just one long, restful nap.


This puffy faced person below...is the steroid riddled...no make-up allowed...just finished having her "helmet" unscrewed...ME! Not too bad for someone who just had their brain mets zapped!!


Thanks for all the prayers and support. We'll know in about 3 months just what a rousing success this has all been!

Love to all!

Denise
Attached Images
 
__________________
1/11-needle biopsy
2/11-Lumpectomy/axillary node dissection - Stage 3c, ER/PR-14/17 nodes
3/11 - Post-op staph infection,cellulitis, lymphedema,seroma,ARRRGH!
4/12/11-A/C x 4, then T/H x 4, H only,Q3 weeks
8/26/11 finished Taxol!!!
10/7/11 mastectomy/DIEP recon
11/11 radiation x28
1/12/12 1st CANCER-VERSARY!
1/12 Low EF/Herceptin "Holiday" :(
2/12 EF up - Back on Herceptin, heart meds
4/2/1212 surgery to repair separated incision from DIEP recon
6/8/12 Return to work :)
6/17/12 Fall, shatter wrist,surgery to repair/insert plate :(
7/10/12 last Herceptin
7/23/12 Brain Mets %$&#! 3cm and 1cm
8/10/12 Gamma knife surgery, LOTS of steroids;start H/Tykerb
8/23/12 Back to work
12/20/12 Injure back-3 weeks in wheel chair
1/12/13 2nd CANCER-VERSARY!
1/14/13 herniate disk in back - surgery to repair
1/27/13 Radiation necrosis - edema in brain - back on steroids - but not back to work - off balance, poor cordination in right arm
5/3/13 Start Avastin to shrink necrosis
5/10/13 begin weaning steroids
6/18/13 Brain MRI - Avastin seems to be working!
6/20/13 quarterly CT - chest, abdomen, pelvis - All Clear!
7/5/13 finally off steroids!!
7/7/13 joined the ranks of the CHEMO NINJAS I am now Tekuto Ki Ariku cancer assassin!
7/13/13 Symptoms return - back on steroids
7/26/13 Back on Avastin - try again!
8/26/13 Not ready to return to classroom yet :( But I CAN walk without holding onto things! :)
9/9/13 Brain MRI - fingers crossed
“ Life is a grindstone, and whether it grinds you down or polishes you up is for you, and you alone, to decide. ” – Cavett Robert
NEDenise is offline   Reply With Quote
Old 08-10-2012, 05:31 PM   #2
adelay
Senior Member
 
adelay's Avatar
 
Join Date: Mar 2010
Location: Mechanicsburg, OH
Posts: 109
Re: Gammaknife Managed....check!

Glad to hear things went well, get some rest. Prayers for a full response.
__________________
~Anna

DX April 2009 age 40
IDC Triple Positive
7 of 14 nodes positive
Lumpectomy May 2009
Port May 2009
AC done in Sept 2009
T done Dec. 2009
Herceptin (should finish Oct. 2010)
Mastectomy January 2010
Radiaition x 33 done April 2010
Tamoxafin for five years
Herceptin done!
Still clear May 2011
3 years out May 2012, all good!
adelay is offline   Reply With Quote
Old 08-10-2012, 05:35 PM   #3
LeahM
Senior Member
 
LeahM's Avatar
 
Join Date: May 2012
Location: Bethlehem PA
Posts: 395
Re: Gammaknife Managed....check!

Shine on Denise!
__________________
39 year old wife, mother of one and nurse.
April 20, 2012: Dx Invasive Ductal Carcinoma
April 25, 2012: ER+(5%), PR-, HER2+++
May 10, 2012: BRCA 1,2 Negative
May 23, 2012: MUGA Scan EF 70%
May 31, 2012: B/L Mastectomy. 2/2 nodes removed and CLEAR!! Power Port placed. 2 Drains. 2 Expanders placed
June 5, 2012: Drains OUT! Ahhhh..
June 12, 2012: Final Pathology Report, .8x.3cm tumor. Micromets to 1 node .35mm under cytokeratin staining. Stage 2A. Onc says "you are lucky to have found this early"
July 10, 2012: Started 6 rounds of TCH with weekly H
Sept 5, 2012: MUGA 65%
Sept 20, 2012: CAT scan of brain clear!
Oct 23, 2012: LAST TC! AMEN! Continue Herceptin every three weeks until July 2013.
Nov 19, 2012: Port out!
Dec 5, 2012: Started radiation
Dec. 10, 2012: MUGA 65%
Dec. 13, 2012: Turned 40. BEST BIRTHDAY EVER!
Jan 23, 2013: Last radiation. Told I am NED. Continue Herceptin every three weeks till July 2013.
Jan 29, 2013: Begin 5 years of Tamoxifen.
Feb 28, 2013: CT Scan with Contrast of lungs. 5mm and 4mm nodules of unknown origin. Rescan in 3 months.
Mar 6, 2013: EF 60%
May 8, 2013: Exanders out, implants implanted...abd. lipo and fat moved up. Girls are looking good!
June 3, 2013: CT Scan with Contrast of lungs. Previous nodules gone. New nodules (2mm and 3mm) found. Rescan in 3 months. So sorry I opened this can of worms...
June 11, 2013: EF 60%
June 25, 2013: Last Herceptin. wow...
Aug 20, 2013: Tumor markers within normal limits. Xray to sore left ribs shows no disease or fractures.
Sept 9, 2013: CT of lungs shows no disease. Closing this can of worms and moving on.
Nov 20, 2013: Tumor markers within normal limits. Severe Vit D deficiency, started on prescription Vit. D. Blaming chemo for this.
Feb 2014: Tumor markers within normal limits.
May 2014: Tumor markers within normal limits. Graduated to twice yearly onc appts.
Oct 2014: Tumor markers within normal limits.
May 2015: Tumor markers WNL. Bone density scan fine. Bone scan and xray of ribs shows "something" 4th right rib. Could be healed fracture but if it is healed why does it hurt?
Nov 2015: Tumor markers WNL. Follow up bone scan clear.
Feb 2016: Syncope! WTF? Dizzy too. Brain scan clear, ECHO EF 60%, Halter Monitor shows heart is fine. Viral? I will never know.
June 2016: Tumor markers WNL.
Oct 2016: Stabbing pain right eye. Long story short, trigeminal neuralgia.
Nov 2016 Brain MRI clear.
Jan 2017: Tumor markers WNL, still getting weird pain right rib area, and sometimes right upper chest. Xray x2, Bone Scan, Breast MRI all clear. Scar tissue? Rads. I may never know.
www.onmywaytosurvivorhood.blogspot.com
www.thechemobag.com
www.facebook.com/thechemobag
LeahM is offline   Reply With Quote
Old 08-10-2012, 05:57 PM   #4
Laurel
Senior Member
 
Laurel's Avatar
 
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 1,986
Re: Gammaknife Managed....check!

Well for the record, I think that gal in the photo looks pretty damn snazzy! She looks like one brave lady if you ask me! Glad it went well, Denise.
__________________

Smile On!
Laurel


Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara

11 Years NED
I think I just might hang around awhile....

Laurel is offline   Reply With Quote
Old 08-10-2012, 06:17 PM   #5
carlatte7
Senior Member
 
Join Date: Jun 2012
Posts: 129
Re: Gammaknife Managed....check!

You look brave and calm to me! Glad that's done , and sending restful thoughts.
carlatte7 is offline   Reply With Quote
Old 08-10-2012, 07:13 PM   #6
Becky
Senior Member
 
Becky's Avatar
 
Join Date: Sep 2005
Location: Stockton, NJ
Posts: 4,157
Re: Gammaknife Managed....check!

Just posting to give my love and support to you.
__________________
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 15 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"
Becky is offline   Reply With Quote
Old 08-10-2012, 07:25 PM   #7
sassy
Senior Member
 
sassy's Avatar
 
Join Date: Sep 2005
Location: Mountains of Virginia
Posts: 2,267
Images: 4
Re: Gammaknife Managed....check!

Denise,

So glad that step is behind you! You look fantastic BTW!
__________________
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.......
14YEARS NED!
sassy is offline   Reply With Quote
Old 08-10-2012, 07:46 PM   #8
KDR
Senior Member
 
KDR's Avatar
 
Join Date: Aug 2010
Location: New York, New York
Posts: 1,580
Re: Gammaknife Managed....check!

Hi, Denise,
You look great--just like a young schoolteacher! Glad to hear that this is behind you. You've handled it with such grace-
Always
Karen
__________________
World Trade Center Survivor (56th Floor/North Tower): 14 years and still just like yesterday.
Graves Disease, became Euthyroid via Radioactive Iodine, June 2001.
Thyroid Eye Disease. 2003. Decompression surgery in 2009; eyelid lowering surgery in 2010.
Diagnosed: June 2010, liver mets. ER-/PR+10%; HER2+++.
July 2010: Begin Taxol/Herceptin. Eliminate sugar from diet. No surgery or radiation.
January 2011: NED
April 2011: Progression in liver only. Other previous affected areas eradicated. Stop Taxol/Herceptin after 32 infusions.
May 2011: Brain MRI: clear.
May 2011: Begin Tykerb daily, Xeloda twice per day for one week on, one week off, and Herceptin.
November 2011: Progression in liver. All other tumors remain eradicated.
December 2011: BEGIN TRIAL #09-093 Taxol, MCC-DM1 (T-DM1), Perjeta.
Trial requires scans every six weeks, bloodwork and infusions weekly.
Brain MRI: clear.
January 2012: NED. Liver mets, good riddance!
March 2012: NED. Developed SMA (rare blood clot) in intestinal artery and loss of sight in right eye due to optical nerve neuropathy. Resolved when Taxol removed this month.
Continue Protocol of T-DM1 weekly and Perjeta every 3 weeks.
May 2012: NED.
June 2012: Brain MRI: clear.
June-December 2012: NED.
December 2012: TRIAL CONCLUDED; ENTER TRIAL EXTENSION #09-037. CT, Brain MRI, bone scan: clear. NED.
January-March 2013: NED.
June 2013: Brain MRI: clear. CEA upticking; CT shows new met on liver.
July 3, 2013: DISASTER STRIKES during liver ablation: sloppy surgeon cuts intercostal artery and I bleed out, lose 3.5 liters of blood, have major hemothorax, and collapsed lung requiring emergency resuscitative thoracotomy, lung surgery, rib rearrangement and cutting deep connective tissue, transfusion. Ablation incomplete. This life-saving procedure would end up causing me unforgiving pain with every movement I make, permanently, otherwise known as forever.
July 26, 2013: Try Navelbine/Herceptin. Body too weak after surgery and transfusion. Fever. CEA: Normal.
August 16, 2016: second dose Navelbine/Herceptin; CEA: Normal. Will skip doses. Watching and waiting.
September 2013: NED, Herceptin only. CEA: Normal. Started Arimidex.
October-November 2013: NED. Herceptin and Arimidex. CEA, CA125, 15-3: Normal.
December 2013: Something brewing. PET lights up on little spot on liver; CEA upward trend, just outside normal. PET and triphasic liver scan confirm Little Met. Restart Perjeta with Herceptin, stay on Arimidex. Genomic sequencing completed for future treatments, if necessary.
January 2014: Ablate Little Met on the 6th. Happy New Year.
March 2014: Brain MRI: clear. PET/CT reveal liver mets return; new lung mets. This is not funny.
March 2014: BEGIN TRIAL #10-005 A(11)-Temsirolimus plus Neratinib.
April 2014: Genomic testing indicated they could work, they did not. Very strange drug combo for me, felt weird.
April 2014: Started Navelbine and Herceptin. Needed something tried and true, but had significant progression.
June 2014: Doxil and Herceptin.
July 2014: Progression. Got nothing out of it. Brain: NED.
July 2014: Add integrative medical hematologist-oncologist to my team. Begin supplements. These are tumor-busting, immune system boosters. Add glutathione, lysine and taurine IV infusions every three weeks.
July 2014: Begin Gemzar, Herceptin & Perjeta. Happy.
August 2014: ECHO perfect.
January 2015: Begin weekly Vitamin D Analog infusions. 25 mcg. via port.
February 2015: CT: stable.
April 2015: Gem working, but not 100%. Looking into immunotherapy. Finally, treatments for the 21st century!
April 2015: Penn Medicine. Dendritic cell immunotherapy.
KDR is offline   Reply With Quote
Old 08-10-2012, 09:13 PM   #9
JennyB
Senior Member
 
JennyB's Avatar
 
Join Date: Apr 2011
Location: Port Hedland, Australia
Posts: 382
Re: Gammaknife Managed....check!

Well done to you and your family you appear to be sailing through this with buckets of grace. I hope the cancer gracefully exits you now and admits defeat!!

Much love

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!!
JennyB is offline   Reply With Quote
Old 08-10-2012, 10:59 PM   #10
michka
Senior Member
 
michka's Avatar
 
Join Date: Feb 2007
Location: Paris, France
Posts: 858
Re: Gammaknife Managed....check!

Denise, I am so happy it is now over and that you are OK. You are a brave Lady. I hope you will recover real fast. I am sending hugs. Michka
__________________
08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
michka is offline   Reply With Quote
Old 08-11-2012, 02:54 AM   #11
Ellie F
Senior Member
 
Join Date: Feb 2009
Posts: 1,526
Re: Gammaknife Managed....check!

Sending hugs and love to you. Glad this is now behind you and the mets are well and truly zapped
Ellie
Ellie F is offline   Reply With Quote
Old 08-11-2012, 02:54 AM   #12
Redwolf8812
Senior Member
 
Redwolf8812's Avatar
 
Join Date: Jul 2010
Location: South Jersey
Posts: 515
Re: Gammaknife Managed....check!

Rousing success....check!

- Penny
__________________
...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.
Redwolf8812 is offline   Reply With Quote
Old 08-11-2012, 05:35 AM   #13
Bunty
Senior Member
 
Join Date: Jul 2011
Location: Sydney, Australia
Posts: 465
Re: Gammaknife Managed....check!

Soooo good to hear from you, and to see your amazing face. Well done you for getting through this, and making it all happen so quickly. Heal well Denise... xx
__________________
dx Dec 2000 dcis 2.5cm clear sentinel node, ER/PR- Her-2+
lumpectomy, 6 cycles AC, 6 weeks rads
October 2007 three x 2.5cm lung mets. 8 months Taxol, started Herceptin and continue. Significant reduction in lung mets.
June 2011 3cm x 4cm liver tumour. Started Abraxane and continue with Herceptin.
November 2011. Finished with Abraxane, continue with just Herceptin. Liver tumour now reduced to 15mm x 12mm. Lung tumour now 10mm x 0.5mm
February 2012. Scans show everything stable, and brain scan clear.
July 2012. PET/CT scans show I'm in remission - no active cancer!
]Dec CT brain cllear, lungs stable, liver tumour has increased to 20mm. PET scans showed active liver met and active lung thinglet, and possible bone met.
Jan 2013 recommence Abraxane, continue with Herceptin.
June 2013 finish Cycle 6 Abraxane, continue with Herceptin. 30% reduction in liver tumour, everything stable.
December 2013. CA15-3 on rise.
February 2014. PET and CT scans show single liver tumour has increased to 35mm. No other activity.
March 2014. Planned for SBRT for liver met, but couldn't have treatment as tumour too close to bowel. Continue Herceptin.
April 2014. Surgeon advises that I am a good candidate for liver resection, so will have operation early May (after camping holiday). Tumour now 44mm x 29mm.
May 7, 2014. Two liver tumours surgically removed. Third of liver removed, and gall bladder. Am I NED?May 2014. Pathology of tumour shows it's now ER+ (95% staining).
June 2014. CA15-3 has decreased to 18 from a pre-surgery reading of 59!
June 2014. Started Femara, continue with Herceptin.
July 2014. Stop Femara due to severe Osteoporosis. Commence Tamoxifen, continue Herceptin. Waiting to hear if I can have Aclasta infusion.
August 2014. CA15-3 has decreased further to 12 - YAY!
October 2014. Aclasta infusion for Osteoporosis. November 2014, CA15-3 decreased to 11. Scans of liver all clear, something new showing up on lung, but just watching at the moment.
November 2015. Started SBRT on solitary lung met.
November 2015. Bone density scan showed very good improvement so back on Femara - yay!
December 2016. 6 treatments of SBRT radiation on lung. Seems to have had some effect.
June 2016. CA15-3 still stable and low at 9.
June 2016. Started subcutaneous Herceptin replacing infusion.
Jan 2017. LVEF dropped to 46%. Stopped Herceptin.
Feb 2017. Started ACE Inhibitor and BETA Blocker. Still off Herceptin.
Aug 2017. Two new mets - Portacaval lymph node and mediastinal lymph node.
Aug 2017. Blood tests show extremely elevated liver enzyme levels. Many tests to investigate.
Sept 2017. Portacaval lymph node blocking liver bile duct causing liver enzyme and Bilirubin problems.
Oct 2017. 8cm stent inserted into liver bile duct. Procedure caused pancreatitis, and hospitalised for 3 days. Liver enzymes improving rapidly.
Nov 2017. Commenced 4 weeks of radiation on Portacaval lymph node. 5 week break before chemo.
Jan 2018. CT scan. 11 new small liver mets, and new superclavical lymph node med.
Jan 2018. Start Kadcyla. CA15-3 426.
Apr 2018. First scans since starting Kadcyla. All tumours reducing. CA15-3 dropped to 30 from 426.
Dec 2019. Still on Kadcyla, but two small brain mets have been treated in the past month with SRS. CA15-3 stable for 12 months at 11.
Bunty is offline   Reply With Quote
Old 08-11-2012, 06:36 AM   #14
ammebarb
Senior Member
 
Join Date: Mar 2009
Posts: 508
Re: Gammaknife Managed....check!

Sending along my wishes for a hugely successful zapping! I also think you look great. You and your team really have made things happen pretty quickly. Hope these next three months go quickly too, so that you can find out that those mets were zapped to smithereens! Praying for you.

Barb /a.
ammebarb is offline   Reply With Quote
Old 08-11-2012, 11:27 AM   #15
StephN
Senior Member
 
StephN's Avatar
 
Join Date: Nov 2004
Location: Misty woods of WA State
Posts: 4,119
Wink Re: Gammaknife Managed....check!

Easy as falling of a log, eh? Congrats!

Just lie there and let the machine do the work. What could be more relaxing?

When do you wean off the steroids? Once I started the weaning, it took a couple of weeks for my "moon face" to look more normal and about 4 weeks to go away altogether.
__________________
"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.
StephN is offline   Reply With Quote
Old 08-11-2012, 12:29 PM   #16
Lani
Senior Member
 
Join Date: Mar 2006
Posts: 4,772
Re: Gammaknife Managed....check!

For those who may need SRS (gamma knife or cyberknife) someday and are confused by the referral to the helmet being screwed in, the gamma knife as I understand it requires a "helmet" be screwed into the skull through the scalp to hold the position of the target (patient) while aiming the treatment (pinpoint radiation)
(just for the length of the procedure)-- whereas the cyberknife does not. The cyberknife was developed by Dr. John Adler a neurosurgeon at Stanford with the help of NASA for delivery of radiation with pinpoint accuracy without the use of any invasive device to hold the skull(and brain) still.


From my prior research, which option is available to any one person has to do with whether they live near a cyberknife, what size the lesion(s) are and the experience of the person delivering the treatment. Even large lesions can I understand be treated with the cyberknife if more than one session is undertaken.

I think I have posted before on the difference between gamma knife and cyberknife

Has anyone here had both so they can compare their experiences with both types of treatment and give some feedback?
Lani is offline   Reply With Quote
Old 08-11-2012, 03:00 PM   #17
Jackie07
Senior Member
 
Jackie07's Avatar
 
Join Date: Jan 2008
Location: "Love never fails."
Posts: 5,805
Re: Gammaknife Managed....check!

I think the screws are 'pressed' (tight) on the skull to keep the helmet in place. They are not 'screwed' into the skull.
__________________
Jackie07
http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
Jackie07 is offline   Reply With Quote
Old 08-11-2012, 03:34 PM   #18
tricia keegan
Senior Member
 
tricia keegan's Avatar
 
Join Date: Nov 2005
Location: Ireland
Posts: 3,452
Re: Gammaknife Managed....check!

Wow you look amazing considering all you've been through, what a brave soldier you are!!!
__________________
Tricia
Dx July '05 IDC 1.9cm Triple positive 3/9 nodes positive
A/C X 4 ..Taxol/Herceptin x 12 wks then herceptin 1 yr
Rads x 36 ..oophorectomy August '06
Currently taking Arimidex..
June 2011 osteopenia/ zometa x1 yearly- stopped Zometa 2015 as Dexa show normal bone density.
Stopped Arimidex July 2014- Restarted Arimidex 2015 for a further two years on the advice of my Onc.
2014 Normal Dexa scan
2018 Mammo all clear, still NED!
tricia keegan is offline   Reply With Quote
Old 08-11-2012, 04:35 PM   #19
chekmark
Senior Member
 
chekmark's Avatar
 
Join Date: Nov 2010
Location: Doylestown, ohio
Posts: 334
Re: Gammaknife Managed....check!

What an inspiration you are. You are amazing! Love the hair. Glad you are home and hopefully resting. Please keep us posted as you recover. Keep that spirit kiddo.
__________________
DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
Sept 30, 2014, 4 years NED
chekmark is offline   Reply With Quote
Old 08-12-2012, 12:39 PM   #20
Lani
Senior Member
 
Join Date: Mar 2006
Posts: 4,772
Re: Gammaknife Managed....check!

As the last time I went to see Dr Adler with a friend's son t I was helping gather information/options for treatment of a benign brain tumor was 15 years ago I went on radiologyinfo.org a site cofounded by the Radiological Society of No American and the American College of Radiologists and got the following:

How does the equipment work?

The Gamma Knife® utilizes a technique called stereotactic radiosurgery, which uses multiple beams of radiation converging in three dimensions to focus precisely on a small volume, such as a tumor, permitting intense doses of radiation to be delivered to that volume safely. Current models of the Gamma Knife® use advanced robotic technology to move the patient in submillimeter increments during treatment, to focus radiation successfully on all parts of the target. In most cases, Gamma Knife® treatments are given in a single session.
Under local anesthesia, a special rigid head frame incorporating a three-dimensional coordinate system is attached to the patient's skull with four screws. Imaging studies, such as magnetic resonance imaging (MRI), computed tomography (CT), or angiography, are then obtained and the results are sent to the Gamma Knife®'s planning computer system. Together, physicians (radiation oncologists and neurosurgeons) and medical physicists delineate targets and normal anatomical structures. They use a planning computer program to determine the exact spatial relationship between the target, normal structures and the head frame to calculate Gamma Knife® treatment parameters. Targets often are best treated during the treatment session with combinations of several successive aimings, commonly known as "shots." The physicians and physicists routinely consider numerous fine-tuning adjustments of treatment parameters until an optimal plan and dose are determined.
Using the three-dimensional coordinates determined in the planning process, the frame is then precisely attached to the Gamma Knife® unit to guarantee that when the unit is activated, the target is placed exactly in the center of approximately 200 precision-aimed, converging beams of (Cobalt-60 generated) gamma radiation. Treatment takes anywhere from several minutes to a few hours to complete depending on the shape and size of the target, the number of "shots" and the dose required. Patients do not feel the radiation. Following treatment the head frame is removed and the patient may return to normal activity.


As I understand it he only way to attach something to the skull so there is no "wiggle room" eg for broken necks and after neck surgeries is for the teeth of the screw to enter through the outer table of the bone. I cannot imagine they don't need ti minimize :wiggle room" at least as much if not more for accurate aiming into the brain.

The pin holes are very shallow(there is little between the skin and the scalp in those positions, even if as kids we were called "fat heads!", but never the less it seems to require local anaesthetic if one is awake.

When done for broken necks and neck surgery the screws remain in longer, either for the duration of the surgery (hours) or until the fracture/surgery heals. In those cases the bumps where the screws were can remain slightly raised thereafter, possibly causing discomfort to those who wear headbands near the area.--that is usually the case when only two screws are used due to the screw placement positions.

All four screws should be behind the hairline so any residual bumpiness or tenderness should be known only to the person themselves (or their hairdresser!) I haven't heard of any complaints, but as I mostly read the literature and go to conferences, I am not likely to.

In the big picture of things, I would think any annoyance at the time this is done or after would be minimal (needing to postpone washing hair after the procedure, etc)

Haven't read any complaints on this site about post gamma knife scalp problems. Anyone?

Addendum--looks like they have been working on altering how the screws used:

Neurosurgery. 2007 Apr;60(4 Suppl 2):339-43; discussion 343-4.
Angled screw holes for anterior posts and a frame-positioning device for gamma knife radiosurgery: allowing for better targeting of intracranial lesions.
Quiñones-Hinojosa A, McDermott MW.
Source

Department of Neurological Surgery, Johns Hopkins University, Baltimore, Maryland 21231, USA. aquinon2@jhmi.edu
Abstract
OBJECTIVE:

Gamma knife radiosurgery requires frame positioning so that the treatment target is as close to the center of the frame and as low as possible to cover all of the posterior fossa contents. In this study, we report the use of two devices developed by the senior author (MWM) that facilitate these two crucial objectives in the treatment of intracranial targets using the gamma knife.
METHODS:

Custom front posts with threaded screw holes drilled at 5-, 10-, and 15-degree angles were created by the manufacturer at our request. A U-shaped metal device for frame positioning was designed in-house and fits into the holes at the 100-mm mark on the lateral sides of the Leksell stereotactic frame base. This allowed the positioning device to snap securely into the frame for use in positioning. The positioning device was constructed so that the lowest possible frame position would be achieved with each frame application, while avoiding collisions with the magnetic resonance imaging localizer box.
RESULTS:

Angled front posts allowed for pin contacts with the cranium anterior and/or superior to the superior temporal line despite a lateral or posterior position of the frame. This avoided penetration of the temporalis muscle and reduced discomfort for patients. The U-shaped metal device was used in place of the Velcro straps or ear bars routinely used for frame positioning in which the distance from the frame base to the top of the head must always be measured to avoid collisions with the localizer box. During the past 2 years, these devices have been used on a daily basis, achieving the desired results. In many cases, their use has avoided the need for frame repositioning and rescanning for targets that cannot be reached because of inexact frame positioning.
CONCLUSION:

A new design with angled screw holes in the front posts used for gamma knife radiosurgery allows surgeons to avoid penetration of the temporalis muscle and to maintain a perpendicular orientation of the fixation screw to the outer table of the cranium. They may also prevent mechanical creep caused by the obliquity of pin contact with the cranium and resulting loss of torque. We also present a simple device that may be useful in frame positioning. The device ensures a frame position as low as possible without the need for measurement at the time of frame positioning.

PMID:
17415172
Lani is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 04:38 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2020, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007
free webpage hit counter