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Old 08-15-2007, 09:12 AM   #1
MichelleH
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Question Muga results question & CAT scan results

Hi everyone!

First off, I would like to thank all of you for your emails & especially the prayers. THANK YOU, THEY ARE ALL APPRECIATED!

I would like to keep you informed on how my scans came out on my treatment of Xeloda & Tykerb which I started June 5th. I just got the results last night.
Though being disappointed on the vague description given by the radiologist, but very happy with the results!
First of all............. THERE IS NO NEW METS ANYWHERE! The liver is back to normal size and normal function!! The tumors have "diminished in size". The bones are showing many places of healing!!
I told the doc I was not happy with the vague description by the radiologist and he offered to get copies of my scans (on CD) and also the horrific CAT scan in May and sit down with me to look and compare the two. I said, (of coarse) great! So we will do this at my next appt (in 3 wks).

Here's where my question comes in:
The doctor was not happy with my Muga scan. It was 50% down from 61% in January. Being I am the doc's first (maybe only) patient on Tykerb he does not know the protocol of what to do when the Muga score drops this much. 50% is the bottom of the "normal range". He said it will be either (1) stop Tykerb for a while. (2) cut back the dose of Tykerb, or (3) continue with the same dosage and monitor the heart more frequently. I told him I was rooting for #3!!!!!
I just want to know of others who have had this same experience and at what point did the doctor take action and what action did he take? I am just trying to get a feel of what to expect in 3 wks when I see him again.

My doc is also leaving, moving to Chicago So those of you in Chicago that may get him as your doctor he is a good doc and very willing to work with you (as you have read above). His name is Ervin Hire, He is a nice man and I will miss him so.



Marie & ED, "Keep Believing", I have faith that you will be getting similar results soon!

Love & hugs,
Michelle
__________________
Sept. 2003- 5cm tumor in left breast Her2+ Er- Pr- grade 3,
Mastectomy & 11 nodes removed, all negative.
4 rounds A/C + 12 wky Taxol
25 rads
Dec 2006- recurrence Stage IV (diagnosed 3 days before Christmas!) Lymph nodes in chest, liver, 3 ribs
January 2007- 3 tri wkly rounds of Taxol/Herceptin
Response to lymph nodes in chest, but several more bone mets (skull, shoulders, more ribs, femur, several on spine), liver tumors still growing.
March 2007- 8 wkly rounds of Navelbine/Herceptin/ every 4th wk Zometa
Lymph nodes in chest look great, but more bone mets (of course!), Clavicles, hips, and sacrum (above tail bone) to add to the list. Liver mets still growing.
June 5- started Tykerb/Xeloda

Aug 14- Scans are showing great progress! Tumor shrinkage and bones are healing!

Nov 21 CT scan shows tumor growth in liver & bones next Doc appt on 11-27

Dire need of a lot of prayers and a miracle.
Stay at home mom, 5 yr old girl & 8 yr old boy.
Wife of loving husband
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Old 08-15-2007, 04:09 PM   #2
lilyecuadorian
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Thumbs up

I'm happy that everything is getting better and I'm sure it will improve more and more until you get NED soon ....
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Lily
Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 08-15-2007, 06:22 PM   #3
tousled1
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Michelle,

That's great news! Glad he's going to sit down and show/compare/discuss the results of both scans. Sorry I can't offer you any advise on the low MUGA score. If it were Herceptin you would be taken off for a few months until the LVEF comes back up. With Tykerb I don't know what they do. Best of luck to you. You're in my prayers.
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Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 08-16-2007, 06:16 AM   #4
Rupali
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You need to go for regular walks, deepbreating, eat fish oil capusles, Have at least 200 mg COQ10 daily and get in touch with an alternative medicine practioner.
Talk to a cardiologist and he will put you on Lisinopril and COreg and that will do the trick in 3 weeks.
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Old 08-16-2007, 07:02 PM   #5
MichelleH
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Unhappy My dear sisters,

Thank you all for your responses.

My doctor's office called today telling me to stop taking the Tykerb and that they have scheduled me for another Muga scan in two weeks.

I am currently taking 1000-2000 mg of fish oil and 300 mg of CoQ-10 daily. I have started walking the last couple of nights. Lack of exercise has been a big issue for me because I have found that these drugs have been making me very tired. But I will push myself to get the exercise because this treatment of Tykerb/Xeloda have been the only thing that has worked for me so far since being dx stage 4 in December.

I just want to keep all of you updated.
Thank you again for your responses and prayers.

Love & hugs,
Michelle
__________________
Sept. 2003- 5cm tumor in left breast Her2+ Er- Pr- grade 3,
Mastectomy & 11 nodes removed, all negative.
4 rounds A/C + 12 wky Taxol
25 rads
Dec 2006- recurrence Stage IV (diagnosed 3 days before Christmas!) Lymph nodes in chest, liver, 3 ribs
January 2007- 3 tri wkly rounds of Taxol/Herceptin
Response to lymph nodes in chest, but several more bone mets (skull, shoulders, more ribs, femur, several on spine), liver tumors still growing.
March 2007- 8 wkly rounds of Navelbine/Herceptin/ every 4th wk Zometa
Lymph nodes in chest look great, but more bone mets (of course!), Clavicles, hips, and sacrum (above tail bone) to add to the list. Liver mets still growing.
June 5- started Tykerb/Xeloda

Aug 14- Scans are showing great progress! Tumor shrinkage and bones are healing!

Nov 21 CT scan shows tumor growth in liver & bones next Doc appt on 11-27

Dire need of a lot of prayers and a miracle.
Stay at home mom, 5 yr old girl & 8 yr old boy.
Wife of loving husband
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Old 09-05-2007, 02:48 PM   #6
janet11
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Thanks -- I went to my primary care dr today for a BP check and she put me on CoReg CR for my low LVEF and BP. I'm encouraged seeing that others did well on it. I have my next MUGA in 3 weeks -- I'd LOVE to see improvement (since my last 3 kept sliding downwards).
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Janet in Rowlett Texas

Dx July 2006 IDC 1.8cm, ER-/PR- HER2+ (FISH 7), KI67 High (60%) grade 3, TOPO II neg
Aug2006: lumpectomy, SNB (4 nodes neg), Stage 1
Jan 2007:
Finished 6 cycles of TCH (Taxotere, Carboplatin, Her ceptin). Then Herceptin every 3 weeks.
Feb 2007: Completed Radiation
May 2007: Stopped Herceptin due to low LVEF (49%)
July 2007: LVEF now 44% -- starting Coreg
May 2008: Heart NORMAL! Yippee.
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Old 09-05-2007, 02:51 PM   #7
Rupali
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Dpnt worry, you will be fine now...Just keep walking and start fish oil Buy Carlsons Fish oil. You can get it at WHole Foods. And also start with COQ10
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Old 09-06-2007, 08:32 AM   #8
SoCalGal
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Call the Tykerb care line and get info from them, too. My doc keeps telling me that Tykerb has no heart side effects. Did you have a base line muga before starting? Also, you said you are still in the okay range, just low okay. How many pills do you take a day? I would drop my dose down to 3 pills a day (if you are on the standard 5 pills). Also, co q 10 is best metabolized as a chewable. I take a costly brand but it's supposed to be effective made by douglas laboratories. I take 2 chews a day w/ a meal. And I don't necessarily believe my onc when he says there are very very little heart probs on tykerb. I am just passing along info to you. It could also just be the stress of ALL the chemos to this point.

I know that they are thinking that many do just fine on a reduced dose. And I know it won't harm you to take a break.
Good news - stay focused on that! Blessings...Flori
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 09-06-2007, 10:32 PM   #9
Lala
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Michelle
Congratulations on your scans. That is Great news.
I have dropped my doses of both drugs due to other side effects not heart related. I am on Tykerb @ 1000mg and Xeloda @ 2500mg. I know some have done even lower doses. Sorry you have this issue w levf rate. I would think a little walking is good for the heart. Take it easy and Good Luck on your Muga scan.
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Lala
DX Fall05 Stage 4 er+ pr+ her2+ liver and bone mets
DX Fall06 Brain mets, Brain mets gone Spring 2007
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Old 09-06-2007, 10:35 PM   #10
kat in the delta
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kat in the delta

I am having an MRI of Brain and Bones tomorrow. I need to ask for a MUGA too..as my onc only gave me 3 the whole time on adria/cytox...then taxol and herceptin + one whole yr of Herceptin.
kat in the delta
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Old 09-06-2007, 10:43 PM   #11
Lala
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Kat
Good Luck on your scans !
Thinking of you sending good thoughts.
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Lala
DX Fall05 Stage 4 er+ pr+ her2+ liver and bone mets
DX Fall06 Brain mets, Brain mets gone Spring 2007
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Old 09-07-2007, 08:58 PM   #12
tousled1
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Michelle

Here is the first warning listed for Tykerb on their webstie. So I would say that if your LVEF drops below 50% they would do the same as with Herceptin when your LVEF drops.
Decreases in left ventricular ejection fraction have been reported. Confirm normal LVEF before starting TYKERB and continue evaluations during treatment


__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 09-08-2007, 03:10 AM   #13
rentrac
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MUGA results can certainly make you feel mentally mugged; mine certainy have. I started at 65% before Adriamycin and Herceptin and was down to 53-54% with the start of Tykerb. Exercise is one of the big keys to working with this stuff. It's so hot in the summer here, that the pool makes a great substitute. Just walking around in water up to your neck, playing around with someone like spouse,friend or kids by flutter kicking with noodles or doing stretching or jumping jacks can be taken slowly and give a good cardio workout without seeming as tiring. As your doctor if he can prescribe physical therapy or cardio-therapy so they can guide you in getting back in shape safely and have your insurance help with the tab. After having gamma-knife, my neurosugeon prescribed PT and it certainly made a difference in my cardiac function and overall feeling better - and my MUGA is staying steady if not possibly rising. Good Luck and DON"T DESPAIR!
warmly, Rentrac
__________________
Oct. 2003: Dx age 48, Stage IIIA Ductal Ca. dense dose neoadjuvent AC. BrCa 1&2 -, ER+, PR-, Her2+. 2004: R mastectomy, 3+ nodes, dense doseTaxotere ( allergic), total hysterectomy, radiationx36 . Tamoxifen x6 mo., Arimidex x9 mo. Jan. '06: Multi left metastatic nodes left neck. Stage IV. Taxol, Carboplatin (allergic to both), Herceptin, radiationx27. Herceptin cont'd. 1 mediastinal met in old rad field. April: 2 brain mets - Rcerebellar, Ltemporal lobe. Gammaknife. Stop Herceptin, Start Tykerb. May: CyberKnife-mediastinal node, Zometa restart. July: New RLung mets. Xeloda add. Jan. 2008: CT: Lung mets shrinking. Fatty liver w/increased liver function panel. Feb '08: MRI: brain mets back, 2nd GammaKnife. June: Migraine headaches from cerebellar tumor. Team for WBR - Choose Craniotomy on Cerebellum only. Aug: Crainiotomy successful. Sept: PET -right lung apex clean; left internal mammary artery appears malignant. Herceptin in future. Left mastectomy?
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Old 09-08-2007, 11:16 AM   #14
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Also from the Tykerb website..."As with other treatments for HER2-positive advanced or metastatic breast cancer, there have been reports of changes in how the heart pumps blood through the body and how the heart beats. Call your doctor right away if you are short of breath, have rapid heartbeats (palpitations), or feel very tired."

I am in process of checking in with my onc... as the last 3-4 weeks I have become increasingly tired, tired, tired. Almost like I want to remain horizontal all the time. Sorta like I ain't getting enough oxygen or blood pumpin' - wonder what we can do?
__________________
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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Old 09-08-2007, 02:34 PM   #15
rentrac
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I was thinking it was just me that was getting tired, tired, tired. I've been in PT trying to build myself up again, but had to stop the cardio workout because my skin is getting too fragile: blisters on my toes, split skin on heels, finger tips, etc. My MUGA didn't change significantly (at least it's not worse), but I'm now crashing and falling asleep by 8pm by mid week, and I'm only working half time. I was hoping I was just out of shape. I stopped Xeloda a week ago to see if my skin could repair some, and I'll go to onc's office Monday for them to check - if our little tropical storm Gabrielle behaves and doesn't go hurricane on us. Have you had any problems with mouth sores as well?
Rentrac
__________________
Oct. 2003: Dx age 48, Stage IIIA Ductal Ca. dense dose neoadjuvent AC. BrCa 1&2 -, ER+, PR-, Her2+. 2004: R mastectomy, 3+ nodes, dense doseTaxotere ( allergic), total hysterectomy, radiationx36 . Tamoxifen x6 mo., Arimidex x9 mo. Jan. '06: Multi left metastatic nodes left neck. Stage IV. Taxol, Carboplatin (allergic to both), Herceptin, radiationx27. Herceptin cont'd. 1 mediastinal met in old rad field. April: 2 brain mets - Rcerebellar, Ltemporal lobe. Gammaknife. Stop Herceptin, Start Tykerb. May: CyberKnife-mediastinal node, Zometa restart. July: New RLung mets. Xeloda add. Jan. 2008: CT: Lung mets shrinking. Fatty liver w/increased liver function panel. Feb '08: MRI: brain mets back, 2nd GammaKnife. June: Migraine headaches from cerebellar tumor. Team for WBR - Choose Craniotomy on Cerebellum only. Aug: Crainiotomy successful. Sept: PET -right lung apex clean; left internal mammary artery appears malignant. Herceptin in future. Left mastectomy?
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Old 09-20-2007, 06:28 PM   #16
MichelleH
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Angry Crap, crap & more crap.

Just wanted to keep you lovely ladies updated on what going on.
I have had 2 more mugga scans
August 30th score- 50% (again!)
Sept 18th score- 52% (only up 2%)

I have also developed a cough since August 30th. It feels like the same cough when the lymph nodes in the chest were swelling with "C" (I hate that word). I see my new doc for the first time on the 25th. Thank you all for all the suggestions. It gives me ideas to suggest for the doc. I & my husband wonder what is the magic number is for when I can go back on Tykerb.
I have been stationary bike riding which I find very boring. I have also started walking which my two little ones love to do with their mom. It is becoming quite the juggling act to keep the Hand & Foot Syndrome also under control but also getting exercises done. I don't want them to stop my Xeloda as well! I find exercising hard to do cause I am sooooooooo tired most of the time. But I know (especially when I look into the big brown eyes of my two precious kids) that I must fight & fight harder.... damn it... and I will!

Thank you all for responding to my post and for all the suggestions. I love you all my warriors!
__________________
Sept. 2003- 5cm tumor in left breast Her2+ Er- Pr- grade 3,
Mastectomy & 11 nodes removed, all negative.
4 rounds A/C + 12 wky Taxol
25 rads
Dec 2006- recurrence Stage IV (diagnosed 3 days before Christmas!) Lymph nodes in chest, liver, 3 ribs
January 2007- 3 tri wkly rounds of Taxol/Herceptin
Response to lymph nodes in chest, but several more bone mets (skull, shoulders, more ribs, femur, several on spine), liver tumors still growing.
March 2007- 8 wkly rounds of Navelbine/Herceptin/ every 4th wk Zometa
Lymph nodes in chest look great, but more bone mets (of course!), Clavicles, hips, and sacrum (above tail bone) to add to the list. Liver mets still growing.
June 5- started Tykerb/Xeloda

Aug 14- Scans are showing great progress! Tumor shrinkage and bones are healing!

Nov 21 CT scan shows tumor growth in liver & bones next Doc appt on 11-27

Dire need of a lot of prayers and a miracle.
Stay at home mom, 5 yr old girl & 8 yr old boy.
Wife of loving husband
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Old 09-20-2007, 08:59 PM   #17
tousled1
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Join Date: Feb 2006
Location: Acworth, GA
Posts: 2,104
Michelle,

Has your oncologist ever suggest a echocardiogram instead of a MUGA? Echos are must less invasive and give a much better overall result of the heart function. I know it seems to be a personal preference of the doctor as to which test is performed. If I were you I'd bring up the suggestion of getting an echocardiogaram --no dye used. Just like an ultrasound of the heart.
__________________
Kate
Stage IIIC Diagnosed Oct 25, 2005 (age 58)
ER/PR-, HER2+++, grade 3, Ploidy/DNA index: Aneuploid/1.61, S-phase: 24.2%
Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
BRCA1/BRCA2 negative
Stage IV lung mets July 13, 2007 - TCH
Single brain met - August 6, 2007 -CyberKnife
Oct 2007 - clear brain MRI and lung mets shrinking.
March 2008 lung met progression, brain still clear - begin Tykerb/Xeloda/Ixempra
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Old 09-25-2007, 02:13 PM   #18
MichelleH
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Join Date: May 2007
Location: Northern Michigan
Posts: 68
Kate,
I have a new doc now, the other has moved to Chicago. I just saw him for the first time today. He does not have a problem with my mugga score. He said "Lets worry about it when it gets down towards the mid 40s then we may have to stop the Tykerb". (I wish my other doc had that same view.) He has resumed my Tykerb!!!!!!! He has also told me that exercising isn't going to bring up my Mugga score any, because the decreased heart function is due to metabolism of the heart. I have been coughing for the past month. I have had this same cough and other symptoms when the lymph nodes in the chest were swelling with "C". I hope the Tykerb kicks it to the curb once again.
Thank you for your reply. I feel like I got a lot of big sisters here with a lot of good advice.
Keep in touch,

Love,

Michelle

Doing the Happy Dance once again!!!!!!!!!!!!!!!
__________________
Sept. 2003- 5cm tumor in left breast Her2+ Er- Pr- grade 3,
Mastectomy & 11 nodes removed, all negative.
4 rounds A/C + 12 wky Taxol
25 rads
Dec 2006- recurrence Stage IV (diagnosed 3 days before Christmas!) Lymph nodes in chest, liver, 3 ribs
January 2007- 3 tri wkly rounds of Taxol/Herceptin
Response to lymph nodes in chest, but several more bone mets (skull, shoulders, more ribs, femur, several on spine), liver tumors still growing.
March 2007- 8 wkly rounds of Navelbine/Herceptin/ every 4th wk Zometa
Lymph nodes in chest look great, but more bone mets (of course!), Clavicles, hips, and sacrum (above tail bone) to add to the list. Liver mets still growing.
June 5- started Tykerb/Xeloda

Aug 14- Scans are showing great progress! Tumor shrinkage and bones are healing!

Nov 21 CT scan shows tumor growth in liver & bones next Doc appt on 11-27

Dire need of a lot of prayers and a miracle.
Stay at home mom, 5 yr old girl & 8 yr old boy.
Wife of loving husband
MichelleH is offline   Reply With Quote
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