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06-25-2009, 12:19 AM
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#1
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Senior Member
Join Date: Jun 2007
Location: RHODE ISLAND
(Ed getting me a latte on 2nd Cancerversary Cruise 2008)
'BELIEVE': To accept as true or real, To have faith in, To presume
ALWAYS BELIEVE
Posts: 2,999
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~Dr Burstein (DFCI) Meets The Mighty Oak!~
Dr Burstein was another blessing we can say is a wonderful addition to this journey. One thing Ed and I have is one hell of a medical team and we would not change so much as a nurse. Thank you all, your medical expertise must be acknowledged once more in print.
When I asked Dr Burstein to take a moment to review my option list and cross off things that would never be an option for Ed and circle hope, he replied, "Of course, that is why we are here." I liked the fact that he said 'we'. He took his pen and read, crossing off the options that were not now an option or never should be. He circled the good options as he smiled and said, "Well, you have certainly done your research, I Liiiiiiiiiiikke that." He explained with each pen stroke as he repeated the name of the option, why or why not. He knew Ed was hard of hearing and as he moved his chair closer to him and finished the list, he looked at Ed and told him, "She has done all of her homework, sheee's goood." (thanks to some help from my Her2 family).
*Intrathecal Herceptin (through the Ommaya Reservoir) has been used with drugs such as: Cytosine Arabinoside (standard or liposome bound), Liposomal Doxorubicin aka Adriamycin/Doxil/Rubex (type of antibiotic used in chemotherapy) Methotrexate aka Amethopterin (analog of folic acid) and Thiotepa (antineoplastic agent, a sulfer analog of Tepa)
Intrathecal Herceptin is not an option for Ed, it is a dangerous application for him, does nothing good for his QOL issue, and has not been studied enough to prove effectiveness. It is in the works and can still remain an option for others, follow this, review carefully and keep on your last options list until someone crosses it off. Remember, Ed has a race against time right now and I knew somethings would be entirely crossed off. Some thing must work for him in the next 2-3 months and this is most certainly the facts for him.
The next things discussed were the general options list and review. The last option we want is *Supportive Care which is keeping his symptoms controlled if he moves on without treatment. It remains an option to us since his QOL has been an ongoing issue. Being symptom-free at the moment, he could stop treatment. This means that I would have to keep an eye on symptoms and treat accordingly. He would be able to live out the rest of his life with as little treatment as possible. He has chosen to keep this in the closet for now, papa bear has battle gear on right now!
*Clinical Trials at Dana Farber or *Clinical Trials at OncoMan's because he physically cannot travel any further. I will not even mention the trials on my list because if considering this, the most recent data is important for your choice. I will however, mention the ones on my list & those endorsed for Ed from Dr Burstein. They are Patupilone (NCT00450866) and Sagopilone (ZK-EPO)(NCT00496379), the results for (ZK219477) will be out July 2009, please keep an eye out. These drugs cross the BBB in vivo to inhibit brain tumor growth and metastasis. They are related to Ixabepilone (Ixempra)!! I specifically think of Dchips1 and Lori R when I write these names. Ladies, follow these wonder drugs for your own personal hope.
Now we come to the list of *Chemotherapy Drugs that were circled. Anyone who wants my last option folder can p.m. me because the list is not short. I will keep this post focused on his positive options for chemotherapy. Kind of looks like this on paper.....
*Herceptin* (adding this back to regime)
+
*Chemotherapy Agent* (Carboplatin, Gemzar, Navelbine, Xeloda again, or Tykerb again)
+
*Femara* (replacing current Faslodex)
+
*Temodar (Temozolomide)* (brain tumors)
imidazotetrazide derivative.
*Zometa* (no choice in this matter)
Quadramet (pain reliever that attaches to bone w/potential of radiation) was not suggested because it does damage the bone marrow. In Ed's case he cannot afford any more marrow damage.
Mannitol (Osmitrol) an osmotic diuretic used to open BBB/Brain swell. It draws fluid from the brain. There is a procedure involved that needs to be done to perform this. This was not recommended for Ed and quickly crossed off the list by Dr Burstein. This not getting circled made me a little sad. This is all a balance of QOL, estimated effectiveness and what he can tolerate.
Summary on our current feelings about what will happen seem to lean on the Chemotherapy route. Right now besides trying to claim life it is vital for QOL to become the second main concern for us. My frail husband had things pretty much under control but things took a quick turn for the worst. I am so happy I had this list started for 2 years and recently needed just a tune-up.
If you secretly ask me, because I play a doctor in real life (my favorite line for a couple of years now)......I would say....
HERCEPTIN + CARBOPLATIN + FEMARA + TEMODAR + TYKERB (if we could safely add it).
This would allow him to continue treatment with just a change in chemotherapy medications. The trips to and from Boston 2-4 times a months is too much for him right now. He would also get poked and tested more than he has been. Ed is frail and tired but still has that fight in him. I feel for his situation and keeping that QOL in the front lines............
He will be in chemotherapy Friday with a new regime. We are happy with this but OncoMan and Dr Burstein will speak tomorrow. Part of me is saddened and worried about taking him off the Ixempra. As for OncoMan, Dr Burstein complimented his treatment for Ed. Dana Farber knows Mighty Oak and his struggles and are happy he still thrives and breaks the rules. This sudden turn of events was unavoidable but certainly expected at some point. OncoMan was applauded and this even strengthened our faith in him. Dr B also stated that Ed's cancer composition could not be any worst, he has all of the worst factors of breast cancer, every last one. Yet, still breaking the rules.
I hope I could supply you with some of the hope I seen today. Science is moving at an amazing rate. Thanks for your continued prayers, support and unconditional love for us. Right back at 'cha!!>>Believe51
PS: Please keep those prayers and positive energy flowing since we are still DEEP IN THE WOODS!
PPS: Giving praise to Ed being a tumor marker sensitive person. Although this happened quick for him, TM made us act fast. His CA27/29 jumped to 690 and CEA was 4.1. CEA has always meant his brain/bone. Praise to TM's. If not this would all be too late. He gets them done every 3 weeks, he must.
__________________
9/7/06Husband 50yrs=StageIV IBC/HER2+,BoneMets10/06TaxotereX10,'H'1X wk,Zometa,Tamoxifen4/12/07Last Tax5/18/07Pet=Rapid Cell Activity,No Organ Mets,Lytic Lesions,Degeneration,Some Bone Repair5/07ChemoFail6/01/07Pleural Thoracentisis=Effusions,NoMalignantCells6/19/07+7/2/07DFCI
6/25/07BrainMRI=BrainMets,Many<9mm7/10/07WBR/PelvisRad37.5Gx15&Nutritionist8/19/07T/X9/20/07BrainMRI=2<2mm10/6/07Pet=BoneProgression
10/24/07ChemoFail11/9/07A/Cx10,EndTam12/7/07Faslodex12/10/07Muga7512/13/07BlasticLesions1/7/08BrainMRI=Clear4/1/08Pet=BoneImprovement,
NoProgression,Stable4/7/08BrainPerfect5/16/08Last A/C8/26/08BrainMets=10(<9mm)9/10/08Gamma10/30/08Met=5mm12/19/08Gamma5mets5
12/22/08SpinalMets1/14/09SpinalRads2/17/09BrainMRI=NoNewMets4/20/09BoneScan5/14/09Ixempra6/1/09BrainMRI=NumerousMets6/24/09DFCIw/DrBurstein6/26/09Continue
Ixempra/Faslodex/Zometa~TM now lower7/17/09Stop Ixempra By Choice9/21/09HOSPICE10/16/09Earned His Deserved Wings And Halo=37 Month Fight w/Stage 4 IBC, Her2+++,My Hero!!
Last edited by Believe51; 06-25-2009 at 12:32 AM..
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06-25-2009, 05:41 AM
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#2
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Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
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Marie, I'm so stumped for words. As I read your report, I feel your strength, your concerns, but most of all your love and committment to Ed. God bless you girl and may He give you mighty strength as you begin your newest round of battles. Luv U, 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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06-25-2009, 06:10 AM
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#3
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Senior Member
Join Date: Jan 2009
Location: Colorado Springs, CO
Posts: 430
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I stayed up awhile longer last night looking for your post. I knew when I woke up this morning, something incredible from you would be waiting for me here at the forum. I was not disappointed. When do you sleep Marie? My dear, you seem to do your best writing in the wee hours of the morning. I always get this picture in my head of you . . . taking care of Ed, seeing that he is comfortable, and then sitting down to talk to us when all is quiet and you can collect your thoughts. You are amazing.
How blessed the Mighty Oak is to have you as an advocate. I too am impressed with a doctor that sees the bonuses in that. It is disappointing that some of the potential options got crossed off the list, but am grateful that there was still an option that was open.
You both will continue to be in my thoughts and prayers. I pray that you continue to find the strength to battle this crappy disease.
Sending Love your way,
Alice
__________________
9/15/08 (age 52) - Mammo: calcifications
9/22/08 - Biopsy: DCIS, grade 3. ER,PR status: Pos. in 75-90% of tumor cells.
10/01/08 - Ob/Gyn appt.: found complex, mostly cystic mass on right ovary - 11cmx12cmx 8cm
10/15/08 - Hysterectomy & Oophorectomy, Lumpectomy: Cyst on uterus, not ovary - all was benign. Breast - 5 of 6 bad margins. 2 Sentinel Lymph nodes removed, both negative. Stage 0, Tis, N0
12/11/08 - Mastectomy & DIEP reconstruction: Surprise! 2 cm Invasive DC, grade 2 found. One benign internal mammary lymph node. Stage 1, T1c, N0, all clean margins. ER+ (Proportion Score = 2/5, Intensity Score = 2/3) and PR+(Proportion Score = 3/5, Intensity Score = 2/3)
HER2 score = 3+
1/09/09 - Oncotype DX: Recurrence S/core of 60 !?!?! ER status is NEG!! PR staus is NEG! HER2 score = 12.2 (still positive, greater than 11.5 is positive).
1/20/09 - Started chemo: TCH
5/26/09 - FINISHED CHEMO!
1/05/10 - FINISHED HERCEPTIN!
1/22/10 - Port-a-catheter removed!
3/07/18 - Still NED
9/10/23 - Still NED
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06-25-2009, 06:32 AM
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#4
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Senior Member
Join Date: May 2006
Location: Mesa, Az
Posts: 219
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Prayers
Marie, I am glad that you had excellent care. It makes the rest a little more reassuring that your list was validated. I wish to thank you for your help for me. I met with my onc yesterday and have appt with neuro/gamma man today at 1130 at Barrows. The oncologist said we are going to try herceptintykerb xeloda he is not sure of xeloda dose yet because of the rest of my body is ned. I hope that ED keeps his spirits up and that God heals his body, and gives you the rest that you need as well.
With Love Darita
__________________
dx 1/06 IDC 2cm 38 at dx
2/06 L mast nodes 3/9+ SNB neg ER-/Pr - her2 + Stg 4 liver/pelvis
3/06-9/06Taxol/Carbo/zometa/Herceptin
3/07 6 brain mets WBR down to c-2
4/07 osteonecrosis jaw
1/08 mri new 9mm lesion right lower side
2/08 gamma knife 1 lesion 11/08 regamma
10/09 latent rad necrosis to brain met,
1/20/10 crani: lesion necrosis w active cells continue her add tykerb
1/11 NED just Ingrown toenail! YEAH GOD
8/11 Tykerb, herceptin weekly, elevated her2 levels, negative scans
oct -march 11 new neuro deficits lower legs
3/12 2 spinal metsTykerb, Herceptin
04/12 4050cGY rads T 2-4 & T7-9
5/12 Brain,cervical lumbar clear/thoracic slight decrease
10/12 t 2-4 shrunk t-9 grew start Xeloda, 02/13 stop xeloda,5/13 on metformin, decadron, Tykerb, iv and IT herceptin 5/30/13 total #11 #2 of 80mg dose weekly.
9/13 100mg of IT her, IV hern, 750 mg tykerb, 3mg dec.
last Mri T--3 SHRUNK t7-9 shrunk no edema. Left shift in CBC bone marrow BX negative.
10/13 Ct has shown Double left ureters with stones/cysts in them, after 3 births and lots and U/S iit takes cancer to figure out you have 2 smaller ureters going into 1 kidney!
12/13 Mri brain no new lesions, cervical and lumbar arthritis.
Tspine lesion at T3 stable, T 7-9 GROWTH lots of pain
1/29/14 HIHO HIHO its off to Neuro surgery I go
Life is Good when you wake up in the morning and take a breath and know that God has given me another day.
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06-25-2009, 07:54 AM
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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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Marie,
You are simply amazing. I cannot state much more than this obvious truth. If love and commitment could bring Ed back to NED, it would have happened long ago because of you, dear friend.
I continue to send prayers to you and the Mighty Oak.
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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06-25-2009, 08:03 AM
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#6
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Senior Member
Join Date: Nov 2007
Location: New Jersey
Posts: 889
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Marie, I will continue to keep you and Ed in my prayers. I am glad your meeting went well and that you were able to discuss your options. Now all Ed needs is to start a new treatment to continue his fight. I know you will be by his side to give him strength, love and support.
__________________
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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06-25-2009, 08:54 AM
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#7
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Marie - OMG. You are living proof of the power of our HER2SUPPORT.org University! I am in awe of your's and Ed's strength and carpe diem/claim life spirit! Hallelujah for Oncoman and Dr. Burstein... I feel the exact same way about my docs as your very first paragraph.
Thank you for sharing the options. I must say, if you and I were doctors in real life, we would be a pretty powerful team, as I have either suggested or secretly suspected a number of the options that ended up circled on your list...
All my love and prayers for you and Ed on Friday! Hope springs eternal...
__________________
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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06-25-2009, 09:04 AM
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#8
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Senior Member
Join Date: Oct 2005
Location: New Jersey
Posts: 3,154
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AMAZING LADY!!!!!
I read your post with tears of different depths of emotions happening all at once.
Please know this: I am praying so hard!
Jean
__________________
Stage 1, Grade 1, 3/30/05
Lumpectomy 4/15/05 - 6MM IDC
Node Neg. (Sentinel node)
ER+ 90% / PR-, Her2+++ by FISH
Ki-67 40%
Arimidex 5/05
Radiation 32 trt, 5/30/05
Oncotype DX test 4/17/06, 31% high risk
TOPO 11 neg. 4/06
Stopped Arimidex 5/06
TCH 5/06, 6 treatments
Herceptin 5/06 - for 1 yr.
9/06 Completed chemo
Started Femara Sept. 2006
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06-25-2009, 09:08 AM
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#9
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Senior Member
Join Date: Jul 2007
Location: Northern California
Posts: 764
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Marie,
Again you continue to amaze us with your strength. Sharing your journey with us will help many here on this website.
I am rejoicing over Ed's options and hopeful that they will give Ed a good quality of life for a long time.
__________________
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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06-25-2009, 09:40 AM
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#10
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Senior Member
Join Date: Feb 2008
Location: Bayarea,CA
Posts: 679
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Dear Marie,
Thank you so much for sharing you experiences with us. I learn so much from your posts. Most of all, I am amazed at your perseverence and strength.
My prayers continue for Ed and you!
love,
shobha
__________________
DX: 06-30-2007 - left breast -stage IIIB, Her2/Neu 3+++, ER weakly positive, PR-
Taxol+herceptin weekly for 3 months
FEC+herceptin every 3 weeks for 3 months
BRCA 1 and 2 - Negative
Jan 2008 - Bilateral mastectomy, prophylactic Rt. side.
Radiation for 5 weeks
Completed my yr of herceptin on 07-14-2008
Brain MRI - 3/2/09 Clean
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06-25-2009, 09:48 AM
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#11
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Senior Member
Join Date: Sep 2006
Location: Chicago, IL
Posts: 105
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All I can say is WOW! You are such an amazing, strong person. I have learned so much from you. I will continue to keep you both in my prayers!
Lisa
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06-25-2009, 10:33 AM
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#12
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Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
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Marie, being able to stay connected through this group is just nothing short of amazing. I feel like you both are family! Your thorough report of Ed's doctor's appointment makes me feel like I was right there with you. Thank you for taking time out of your incredibly full life to keep up all informed. Much love, Suzan
__________________
 Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
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06-25-2009, 10:52 AM
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#13
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Senior Member
Join Date: Sep 2005
Location: Central Coast, CA
Posts: 3,207
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Marie,
You have been in my constant prayers even tho I have barely logged in lately.
Everyone should be so blessed to have an advocate like you.
__________________
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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06-25-2009, 11:00 AM
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#14
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Guest
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Thoughts are with you. I will be in RI in late July, will send you a private message.
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06-25-2009, 12:01 PM
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#15
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Senior Member
Join Date: Mar 2009
Posts: 508
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Thinking of you...
You have been in my thougths and prayers off and on all day. Marie, I don't know much about the pure medicine involved in Ed's fight---so I can be of no help in that way, but I can offer my positive mental energy and my prayers....Hugs to you and your Mighty Oak.
Barb A.
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06-25-2009, 12:35 PM
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#16
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Senior Member
Join Date: Apr 2008
Location: Sunny San Diego
Posts: 2,214
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Marie,
When I read your posts I truly wish for a miracle for Ed. You are such a source of inspiration.
Continuing my prayers for a recovery,
'lizbeth
__________________
Diagnosed 2007
Stage IIb Invasive Ductal Carcinoma, Pagets, 3 of 15 positive nodes
Traditional Treatment: Mastectomy and Axillary Node Dissection followed by Taxotere, 6 treatments and 1 year of Herceptin, no radiation
Former Chemo Ninja "Takizi Zukuchiri"
Additional treatments:
GP2 vaccine, San Antonio Med Ctr
Prescriptive Exercise for Cancer Patients
ENERGY Study, UCSD La Jolla
Reconstruction: TRAM flap, partial loss, Revision
The content of my posts are meant for informational purposes only. The medical information is intended for general information only and should not be used in any way to diagnose, treat, cure, or prevent disease
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06-25-2009, 01:04 PM
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#17
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Senior Member
Join Date: May 2006
Location: Haarlem, the Netherlands
Posts: 835
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Marie, he would not be here without you. And you would not be you without his strength and will to live. You are two truly amazing individuals who are giving all of us hope and inspiration.
I am sending you healing energy and strength (just in case you need more of it) and, ofcourse, hugs.
Love
Jacqueline
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Diagnosed age 44, January 2004, 0.7 cm IDC & DCIS. Stage 1, grade 3, ER/PR pos. HER2 pos. clear margins, no nodes. SNB. 35 rads. On Zoladex and Armidex since Dec. 2004. Stopped Zoladex/Arimidex sept 2009 Still taking mistletoe shots (CAM therapy) Doing fine.
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06-25-2009, 02:45 PM
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#18
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Senior Member
Join Date: Feb 2008
Location: South East Wisconsin
Posts: 3,431
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Seems like Tykerb would be the one (or w/H) to lean on considering brain mets, no?
Any access to agents that could resensitize to her2 and endocrine therapy?
i.e. this kind of thinking but up to date:
www.jbc.org/cgi/reprint/272/3/1682.pdf
Dunno if this is relevant to Ed, but maybe the drugs involved are:
1: J Neurosurg. 2009 Feb 6. [Epub ahead of print]  Links
Brain magnetic resonance imaging changes after sorafenib and sunitinib chemotherapy in patients with advanced renal cell and breast carcinoma.
Hill KL, Lipson AC, Sheehan JM.
Penn State Milton S. Hershey Medical Center, Department of Neurosurgery, Hershey, Pennsylvania.
Object The authors report novel imaging findings associated with the treatment of sorafenib (Nexavar) and sunitinib (Sutant), 2 agents used in the treatment of advanced metastatic disease. Methods Patients with renal cell and breast carcinoma metastases to the brain were identified from the prospective database at the Penn State Hershey Medical Center and Penn State Cancer Institute. Results Four patients who received sorafenib or sunitinib after surgical or radiosurgical treatment of their metastases were identified from the database. Clinical and/or radiographic changes consisting of seizures and cognitive or motor changes were described, associated with an increase in peritumoral edema and enhancement. These findings were observed to improve with discontinuation of the medications. Conclusions The administration of sorafenib and sunitinib in patients with metastatic breast and renal cell carcinoma may lead to reversible clinical and imaging changes following surgical or radiosurgical treatment of their brain lesions. The authors hypothesize that leakage of the drug across a locally impaired blood-brain barrier contributes to peritumoral edema and inflammation, which may be erroneously interpreted as disease progression.
PMID: 19199506 [PubMed - as supplied by publisher] |
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06-25-2009, 03:49 PM
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#19
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Webmaster
Join Date: Feb 2005
Location: Home of the "Flying Tomato"
Carlsbad, CA
Posts: 2,036
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Dr. Burstein presented the results of the Neratinib Phase II trial at the last San Antonio meeting.
Regards
Joe
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A Proud webmaster to the internet's most informed, educated, COMPASSIONATE and caring group of breast cancer survivors.
Illegitimi non carborundum
My Album
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06-25-2009, 04:54 PM
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#20
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Senior Member
Join Date: Nov 2005
Location: Northern Calif.
Posts: 981
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Alright Marie! You are armed with lots of options for Ed and are so kind to list several of the for our own use. You are AMAZING!! I am thinking I like the sounds of Dr. Marie and Dr. Brenda. You ladies would kick butt!
Prayers for Ed to have strength and stamina to give his new tx a chance and for complet healing to his body.
Hugs and Prayers,
Lexi
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