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Old 03-24-2008, 01:11 AM   #1
Daisypink
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Treatment options? - Help

Hi

Can anyone help or advise me? I have recently been diagnosed with a 3 cm liver met and bone mets to my sternum. I already have lung mets which are progressing too.

My Oncolgist is keeping me in on my current chemo - Navelbine (Vinorelbine) and herceptin. He is going to refer me to a London hospital to see if there is a drug available on a clinical trial here to help me.

Does anyone know of any drugs that may be suitable to help (please see my history under my name). I am so desparate to live, i am only 34.

Thank you ladies for for help in advance...

Love Jakki
xxx
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Jakki
-xx-

DX May 2005 grade 3 IDC - partial mastectomy/immediate LD Recon. 0 /20 lymph nodes affected
Er+PR+HER2-
E-CMF chemo July 05 - Feb 06, 33 x rads. Tamoxifen
June 06 - Regional Reccurrence - supraclavicular lymph nodes, HER2+. Taxotere chemo Aug 06 - Dec 06, 25 x rads, Arimidex, zoladex, Herceptin.
Feb 07 - further supraclavicular progression, re-staging tests.
April 07 - Lung mets DX, oncologist trying to get me on Tykerb & xeloda on LEAP trial.
June 07 - Lung mets doubled in size, 3 new tumours and one in my back - commenced Tykerb/Xeloda - Zoladex & Arimidex stopped.
September 07 - Tykerb/Xeloda failed.. lung mets still growing and more new ones
October 2007 - Commenced Vinorelbine and back on Herceptin again..
March 2008 - New Scans reveal lung mets still progressing, now have 3cm Liver Met and Bone Met to Sternum - looking for a new clinical trial...
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Old 03-24-2008, 04:24 AM   #2
Becky
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There is Gemzar, Taxol, Abraxane, Carboplatin. I am not sure if all are approved in the UK but I am sure that Taxol is. Perhaps Taxol, Carboplatin and Herceptin might be a good combo. Perhaps even trying Tamoxifen might help too. Just some ideas. My thoughts are with you.
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Kind regards

Becky

Found lump via BSE
Diagnosed 8/04 at age 45
1.9cm tumor, ER+PR-, Her2 3+(rt side)
2 micromets to sentinel node
Stage 2A
left 3mm DCIS - low grade ER+PR+Her2 neg
lumpectomies 9/7/04
4DD AC followed by 4 DD taxol
Used Leukine instead of Neulasta
35 rads on right side only
4/05 started Tamoxifen
Started Herceptin 4 months after last Taxol due to
trial results and 2005 ASCO meeting & recommendations
Oophorectomy 8/05
Started Arimidex 9/05
Finished Herceptin (16 months) 9/06
Arimidex Only
Prolia every 6 months for osteopenia

NED 18 years!

Said Christopher Robin to Pooh: "You must remember this: You're braver than you believe and stronger than you seem and smarter than you think"
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Old 03-24-2008, 08:04 AM   #3
hermiracles
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Posts: 309
Hi Jakki - sorry to hear about the progression to liver and sternum. I recently had progression to my sternum - its always a shock eh?
Glad your Doc is keeping you on chemo and looking around for further options for you. Sorry I'm not really any help - some of Becky's ideas sound really helpful - hope you find the one that will work for you Jakki. Hang in there sis.
Blessings
Hermiracles
__________________
2003 L/DCIS –> LWE: High G./Comedo - 6 nodes clear 6 wks Rx
04/07 2 miracles born ~ very grateful
06/07 Susp areas L/b
09/07 Stage 2 bilat. mastectomy R/ b. clear extens DCIS/IDC Paget’s 8 nodes clear ER(<5%) HER2+++ CT clear
11/07 Portacath - FEC
15/11/07 Stage 4 Emerg op - hip replacemt #NOF bone mets H/Taxotere
12/07 Rx to 'spots' on spine/R/hip/femur 3wkly H
2008 H+T mets to rib/sternum? Aredia CT clear! Cont. H + Aredia 07/08 1 wk Palliative Care - mets to lungs + ?1 to brain
09/08 Stop H complete Epirubicin 1wk PC new brain mets
10/08 2wks WBR 1wk PC 22/10/08 Tykerb/Xeloda 12/08 6 CEREBRAL METS COMPLETELY GONE! Rib mets down to <1cm.
01/09 Tumour markers normal! Rx to L/arm
03/09 LUNGS CLEAR (ALL NODULES GONE!), brain clear, liver clear. Bones stable! ~ THANK YOU GOD
07/09 Repeat CT Scan ~ ALL organs clear apart from bones which remain stable. I walk in gratitude.
***************
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Old 03-28-2008, 06:52 PM   #4
SoCalGal
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A doc at UCLA gave me a consult and he explained his theory to me saying that if you are taking tykerb and it is serving as a partial road block but some cells are still thriving then you should not discontinue it but add another road block to help - in other words add herceptin. He felt that the two worked well together - the old synergy concept. So that's what I'm trying - plus I've just started Avastin. Another block to blood supply for the tumors. I hope this is making sense.
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 03-28-2008, 10:38 PM   #5
tousled1
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Becky has some great ideas that you may want to try. Also you may want to try Ixempra. I have lung mets that are progressing and just started Xeloda/Tykerb/Ixempra.
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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 03-29-2008, 06:12 AM   #6
eric
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Are there any trials around you for an HSP inhibitor or T-Dm1?
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Old 03-29-2008, 05:01 PM   #7
BonnieR
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Dear Jakki, I can't offer you any information but I wanted to send you my thoughts and love. Keep the faith and keep us posted.
Bonnie
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Bonnie

Post menopause
May 2007 Core biopsy, Rt breast
ER+, Pr-, HER2 +++, Grade 3
Ki-67: 90%
"suspicious area" left breast
Bilateral mastectomy, (NED on left) May 2007
Sentinel Node Neg
Stage 1, DCIS with microinvasion, 3 mm, mostly removed during the biopsy....
Femara (discontinued 7/07) Resumed 10/07
OncoType score 36 (July 07)
Began THC 7/26/07 (d/c taxol and carboplatin 10/07)
Began Herceptin alone 10/07
Finished Herceptin July /08
D/C Femara 4/10 (joint pain/trigger thumb!)
5/10 mistakenly dx with lung cancer. Middle rt lobe removed!
Aromasin started 5/10
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Old 04-16-2008, 08:07 AM   #8
Daisypink
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Location: Staffordshire, England
Posts: 22
Smile Hdac Inhibitor

Hi

I have been referred for a trial for an HDAC inhibitor, does anyone know anything about these or have experience of these??

Any help on this appreciated

Thanks

jakki
xxxx
__________________
Jakki
-xx-

DX May 2005 grade 3 IDC - partial mastectomy/immediate LD Recon. 0 /20 lymph nodes affected
Er+PR+HER2-
E-CMF chemo July 05 - Feb 06, 33 x rads. Tamoxifen
June 06 - Regional Reccurrence - supraclavicular lymph nodes, HER2+. Taxotere chemo Aug 06 - Dec 06, 25 x rads, Arimidex, zoladex, Herceptin.
Feb 07 - further supraclavicular progression, re-staging tests.
April 07 - Lung mets DX, oncologist trying to get me on Tykerb & xeloda on LEAP trial.
June 07 - Lung mets doubled in size, 3 new tumours and one in my back - commenced Tykerb/Xeloda - Zoladex & Arimidex stopped.
September 07 - Tykerb/Xeloda failed.. lung mets still growing and more new ones
October 2007 - Commenced Vinorelbine and back on Herceptin again..
March 2008 - New Scans reveal lung mets still progressing, now have 3cm Liver Met and Bone Met to Sternum - looking for a new clinical trial...
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Old 04-16-2008, 08:54 AM   #9
Faith in Him
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Posts: 764
Hi Jakki,

I am so glad that a trial was found for you. I pray that this new drug works well for you. You will be in my thoughts and prayers.

Tonya
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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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Old 04-16-2008, 10:32 AM   #10
Sheila
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Jakki
Will this be used alone or in combo with Herceptin etc? I did see where they are using it with Avastin, which blocks the blood supply to the tumor:


<!-- InstanceBeginEditable name="main text" -->
Zolinza becomes first approved HDAC inhibitor

By Dr Benjamin Friedmann, Pharmaceutical Business Review, October 10, 2006

Merck & Co's Zolinza has been approved by the FDA for cutaneous T-cell lymphoma patients who have progressive, persistent or recurrent disease on or following failure of two systemic therapies, making the oral drug the first in its class to reach the market. However, with similar drugs not far behind, Merck will need to work hard to ensure Zolinza capitalizes on its first-to-market lead advantage.
In some cancer cells, excess amounts of the enzyme histone deacetylase (HDAC) prevent the activation of genes that control normal cell activity. As an inhibitor of HDAC, Zolinza (vorinostat) allows for the activation of genes that may help to slow or stop the growth of cancer cells, although the exact mechanism of Zolinza's anticancer effect has not been fully characterized.
Cutaneous T-cell lymphoma (CTCL) is a rare form of non-Hodgkin's lymphoma which affects the skin. Approval of the once-daily drug was based on two clinical studies in which refractory CTCL patients were evaluated to determine their response rate to oral Zolinza. In the open-label, single-arm, pivotal study, the overall objective response rate was 29.7% in all patients treated with Zolinza.
In addition to CTCL, Zolinza is being investigated in other indications including myeloma, mesothelioma and a variety of other cancers that have entered phase I and II clinical trials since June 2005. Zolinza's wide application reflects the assertive approach Merck is taking to maximize the potential use of the drug as the gold-standard HDAC inhibitor in as many indications as possible.
Furthermore, the strong global sales and marketing power of Merck should provide the commercial strength necessary to drive market uptake of Zolinza successfully in CTCL and in any other indications Zolinza is subsequently approved for.
The future role of HDAC inhibitors is likely to be in combination with existing or novel chemotherapeutic agents. Merck is therefore exploring the effects of Zolinza as a single agent and its use in combination with both other targeted therapies such as Genentech/Roche's Avastin (bevacizumab) and OSI/Genentech/Roche's Tarceva (erlotinib), and with conventional chemotherapy treatment regimens.
Although Zolinza is now the only approved HDAC inhibitor, Merck may potentially face intense competition from Gloucester Pharmaceuticals' romidepsin (FK-228), another HDAC inhibitor also in development for both CTCL and myeloma. Merck will, therefore, need to work hard if it is to ensure Zolinza capitalizes on its first-to-market advantage.
Hope this helps and you can get those mets under control...it seems there are still many options, so trying to find the right one is crucial...I Like what Flori said about adding the Herceptin back in with Avastin.
__________________
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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