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Old 06-13-2018, 05:07 AM   #1
Juls
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Treatment after Kadcyla?

Hi All,


Well looks like my time on Kadcyla may have come to an end.
Ct report received today and apparently I have a shadow in liver. It is in approximately the same place as previous liver met. Ct consultant "sitting on fence" about it!


Does anybody know what is given after Kadcyla. I'm guessing back to Herceptin will be the 1st thing. Concerned that no other good drugs are available in Scotland. Already had Docetaxol, Herceptin, Perjeta, Tecentriq & Letrozole.

I have been on Kadcyla for about 18 months but have had breaks due to high bilirubin. The last break was 10 weeks which I think was too long & may have had an impact on this result.

On a plus point nothing new reported.

Any thoughts or suggestions appreciated.

Juls
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Old 06-13-2018, 01:26 PM   #2
donocco
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Re: Treatment after Kadcyla?

Juls

Look up the work of Dr Linda Vahdut. She is a physician not an alternative practioner. She has been treating triple negative breast cancer with a copper chelator known as Ammonium
Tetrathiomolybdate. First she acheived NED status with chemo then started copper reduction. With chemo alone these triple negative breast cancer patients should have relapsed in a year using the usual statistics. She has kept some NED for as long as four years.

Copper is essential for angiogenesis or blood vessel production by the cancer cells. In theory the type of cancer means little.Pancreatic cancer cells, breast cancer cells, etc etc all use copper for angiogenesis and angiogenesis is essential for cancer growth. Check this out yourself. There are pharmacies that compound Ammonium Tetrathiomolybdate capsules with a doctors prescription.Other people may have other ideas, other chemos or clinical trials

Paul
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Old 06-13-2018, 01:33 PM   #3
tricia keegan
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Re: Treatment after Kadcyla?

Juls sorry to read this, I'm not a million miles away from you in Ireland and my son and his family live in Edinburgh,

I'm sorry I can't really help much with your question but saw a similar question on bc.org and thought some of the replies may help https://community.breastcancer.org/f.../topics/853037
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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!
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Old 06-13-2018, 11:16 PM   #4
Pamelamary
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Re: Treatment after Kadcyla?

Hi Juls,
Sorry to hear this. Might be an idea to find out about what trials are available. I have heard of promising results from Herceptin + Keytruda, and there is some new formulation of Herceptin - trastuzumab deruxtecan (a bit like Kadcyla). Also Ont 380 and Margetuxumab - probably still at trial stage. I wonder if Tykerb is being used much now? These are all Her2+, and I guess there are plenty of non-targeted options. Bewildering, but good luck with finding a new treatment plan.
Best wishes.... Pam
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Diagnosed 2004: Lumpectomy - 2 tumours, both grade 1 infiltrating duct carcinoma, about 12mm. ER+,
C-erbB-2 status 3+.
Clear margins, no nodal involvement.
Radiotherapy, i year Tamoxifen, 4 years Arimidex.
Rediagnosed 2012: Multiple bone metastases.
3/12: began on Marianne trial - T-DM1 + Pertuzamab/Placebo.
5/12:Unexpected development of numerous bilateral liver mets. Came off trial.
Started Docetaxol/ Herceptin + Zometa.
8/12:Bones stable +major regression in liver (!)
9/12:Can't take any more Docetaxol! Start on Herceptin and Tamoxifen. Cross fingers!
Changed to Denosumab.
11/12: Scan shows stable - yay!
11/13: Still stable :-) !!!
1/16: All stable, but lowered calcium, so switched to Zometa 3 monthly.
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Old 06-14-2018, 04:15 AM   #5
Juls
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Re: Treatment after Kadcyla?

Hi Paul,Tricia & Pam,

Thank you for your replies!
I'm meeting my Doctor this afternoon so hopefully will get some info from her. I have also noted your suggestions for discussion with her.
I think part of problem with my Kadcyla treatment was that it was a trial and therefore bound by trial rules. A few months ago I came off trial because time barred( bilirubin too high & over by 1 day) but was still bound by rules as I was getting 6 weekly CT's. Doctors thought this was way to go. I now think I should have gone back to NHS rules & would not have missed so many treatments. Less Ct's but more treatments!

Will update later.


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Old 06-14-2018, 02:14 PM   #6
nancy dip
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Re: Treatment after Kadcyla?

Hi Juls. I have no advice to offer you but send my best wishes to you for the future. Treatment is a whole different ball game over here, isn't it? Nancy
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29/11/06-WLE and then re-excision to get clear margins.
Tumour was 1.2cms; Grade3; Er+ Pr+ HER2 3+++; SNB negative out of 9 nodes.
Chemo was Epirubicin every 3wks x4 then Xeloda (2wks on, 1wk off) for 4 cycles. ( I am part of the TACT2 trial.)
Rads x25
Arimidex for 5 yrs.
Hoping to start Herceptin within the next 2 weeks (we have to follow the HERA protocol to qualify for Herceptin in the U.K.) I worry about the delay in starting Herceptin!! Started 8/10/07
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Old 06-14-2018, 09:33 PM   #7
Cathya
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Re: Treatment after Kadcyla?

Hi Juls;

I am not familiar with your pathology so really can't offer suggestions except to ask if you have had any genetic testing of your mets? I have discovered that cancer does mutate more than we realize and that offers us additional treatments. Best wishes to you Juls.

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 06-15-2018, 02:03 PM   #8
Juls
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Re: Treatment after Kadcyla?

Hi Nancy

Your right! So many drugs not available to us!


Juls
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Old 06-15-2018, 02:39 PM   #9
Juls
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Re: Treatment after Kadcyla?

Hi All,

Yesterday better than expected.

Firstly got discharged from Ortho consultant re tiny bone met which has not changed in nearly 3 years. He feels x-ray every few months along with 6 weekly CT's too much. Just to call him if concerned or in pain.

Oncologist had a few suggestions for future treatment:-
Can continue on Kadcyla for a few more treatments until next Ct which would now have to change to 13 + weeks instead of 6 wkly. Treatment would still depend on bilirubin level but they would not be tied to trial rules/paperwork.

Go on a chemo - but would have hair loss again plus other side effects.. Oncologist didn't want to do this at the moment as only 1 met to worry about.

Go on AI tablet or injection.
or
Ablation & AI tab or injection.

I decided on referral to liver specialist re ablation & tablet (start now) This would have to be done asap.
If not suitable for ablation other treatments still on table. If I do others first and fail, ablation no longer an option.

Also Kadcyla still available for the future!
Zometa 12 weekly.

The only thing missed was Herceptin - but think just an oversight in a long discussion!
Geez - hope I've made right decision!!

Any thoughts etc welcome!

Take care
Juls

I am triple positive. High Er & PR

Last edited by Juls; 06-15-2018 at 02:41 PM.. Reason: Edit
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Old 06-16-2018, 09:28 PM   #10
SoCalGal
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Re: Treatment after Kadcyla?

Hi Juls,
Sorry to hear about the shadow
Why not stretch out kadcyla and add in ai? Seems like it's giving good control everywhere else, (no new spots is GREAT!!!) would adding in ai be enough? And is the growth rate slow enough to wait and see? Hope this isn't muddying up your thinking - there is never a clear cut answer with cancer.

I stayed on herceptin, perjeta, avastin, xgeva for about a year with some progression and some regression. Just recently had a biopsy and am awaiting FOUNDATION ONE results...then will try to find a clinical trial or something.
Good luck to us both!!
xoxo
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, to remove skin mets. Not able to get clear margins. So schedule another 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 – cut out, cut out, 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. New onc orders PET/ct & Brain MRI to re-stage me.
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 trial but then 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. (premeds for Herceptin now)
Sept 2011 Tykerb, Herceptin, Zometa, Avastin. (switched back to Zometa, pet/ct bone mets seemed worse on Xgeva)
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 GAMMA ZAPPA continue HAPZ
APRIL 2013 - cancerversary 17 years from original diagnosis. 6 yrs stage 4. [/COLOR][/B]
"FAILED" PETscan on 4/2/13 (WTF)
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 - NEWSFLASH:
6 YEARS POST GAMMA ZAPPA, 7 YEARS STAGE 4 and 18 YEARS FROM ORIGINAL DX! (CUCK FANCER)
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 Herceptin, PERJETA, xgeva. Adding back Avastin to see if lungs will go quiet
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 and due for MRI brain check (check please!).
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: CA15‐3=46.9 CEA=12.3 CA 27.2=79 SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YEARS STAGE FOUR!
(20 years from original diagnosis) July 2016 - continue HAP plus Xgeva. Not NED but not DEaD.
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
2017 I AM COMING FOR YOU!
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation one=her2+ er/pr negative. AUGUST hoping to start clinical trial if they would just get it together and accept me.
CuckFancer!! 11 years MBC.
Aug 27, 2018 - start clinical trial ZW25 aka this better fu*king work
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Old 06-17-2018, 07:11 AM   #11
Lucy
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Re: Treatment after Kadcyla?

I'm so sorry you're having to deal with this. While I like having options, it's so hard to know what to choose to do when so many options are put on the table. That said, is perjeta with herceptin an option?

Let us know what you decide and how it goes. Keeping you in my thoughts and prayers!
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Old 06-18-2018, 03:10 AM   #12
Juls
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Re: Treatment after Kadcyla?

Hi Cathya

Thank you for your reply.

The trial I've just come off did a genetic test on original tumour last year. Report only given to oncologist if you fail trial due to progression. Think I've ticked that box now!!

I'll remind Oncologist to request this report asap. Could be interesting!


Juls
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Old 06-18-2018, 03:48 AM   #13
Juls
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Re: Treatment after Kadcyla?

Hi Flori,

I asked for an AI a few times over the last year while on Kadcyla but always told not given together!

Oncologist was "willing to be persuaded" to keep me on Kadcyla for a few more cycles, only because I had missed so many & the hope was that bilirubin had settled enough to allow treatment 3 weekly. Scans would change to 13/14 weeks from 6 weekly as no longer on drug trial. Risk being that treatment still inconsistent & I could get a lot worse! They were using 6 weekly CT as guide.


That's interesting that you stayed on a previous treatment with progression and regression. Here they seem to take you off treatments immediately.

I think I might be waiting on similar report to you - foundation/genetic test - part of trial I've just failed. Wonder if it will show up something relevant!

Meanwhile I have started Aromasin (3rd day) but this is all I'm getting at the moment.

Waiting to hear from Liver Specialist/ Integrative Radiologist this week.
Hope he can explain this shadow better than Onc & Radiologist. If its a tumour why don't they say that!


As you say Flori - Good luck to us both!
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Old 06-18-2018, 03:54 AM   #14
Juls
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Re: Treatment after Kadcyla?

HI Lucy,

Yes - difficult to decide. Hope ablation is an option.

I had Herceptin and Perjeta a few years ago. Got about 30 months on it before a bone met found. It was a trial drug and immediately stopped when met found. Don't know if you can go back on it - been turned down in my area of UK anyway!


Take care
Juls
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Old 06-18-2018, 06:09 AM   #15
Laurel
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Re: Treatment after Kadcyla?

Juls,


I am so happy you have a number of options to explore/employ! That is always good news. I do think we all should keep an ear out for what Paul (Donocco) was discussing, copper chelation. Cancer uses copper to grow and it is in nearly every multi-vit out there. I have tried to find one without it and have failed, so no multi for me! Oddly, copper is found in most dark greens, grains, nuts and legumes, all of which are considered excellent additions for heart healthy and anti-cancer diets. Hmmmmm.....however, removal of copper, known to feed cancer, from our blood via chelation would leave the other healthful nutrients intact. I think Dr. Vahdut is on to something and urge you to explore her findings. Please share what you learn!


https://meyercancer.weill.cornell.ed...ents-high-risk
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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
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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
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Old 06-18-2018, 10:54 AM   #16
Juls
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Re: Treatment after Kadcyla?

Hi Laurel


Will research copper chelation asap. I think Ann/Agness posted about this as well.

Juls
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Old 06-19-2018, 07:24 AM   #17
Cathya
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Re: Treatment after Kadcyla?

Juls;

I posted about the treatment I am on now. Ibrance and Letrozole. It is used for ER/PR+ her2- but I found a woman who is on this drug and she said her oncologist told her that it targets the hormone side and there is no reason that it wouldn't work for Her2+'s. Apparently they are running trials now on Her2+'s. I am just finishing my 2nd cycle (pill form) and won't know the results (other than my TM CA125) until scans are run mid July. This is definitely a treatment option for you. Lauren who is Her2+ is on a similar cycle to me so no results yet but I will be checking with her in July and posting her results.

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 06-19-2018, 12:01 PM   #18
donocco
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Re: Treatment after Kadcyla?

Juls

You mentioned being told that Aromase Inhibitors are never to be given with Kadcyla.
Im curious where these oncologists got this info. Kadcyla is Herceptin with a chemo drug attached to it. I think the chemo drug is called Emtansine. Aromotase Inhibitors prevent
the formation of a weak estrogen, Estrone from a weak androgen called Androstendione.
It doesnt make sense that the two cant be given together.

To be sure I called Genentech and they saw no probem using the two. There are clinical trials going on combining AIs with kadcyla. Both drugs can cause musculoskeletal pain but I doubt this is the reason they arent using the drugs together. Can you ask the oncologist about this?

Im thinking about your interest in copper reduction. My guess is if you mention this to the oncologist he or she likely will see it as something of little value and the work of Dr. Vahdut shows that isnt true. I dont like contradicting the oncologists but something doesnt make sense I have to point it out,like using AIs and Kadcycla together.

In simple language, cancer cells are dependent on angiogenesis (blood vessel formation) to grow.Many of the proteins involved in angiogenesis like Hypoxia Induced Factor and Vascular Endothelial Growth Factor are very copper dependent for their functions. I always have believed knowledge is power.

Paul
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Old 06-19-2018, 03:14 PM   #19
Cathya
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Re: Treatment after Kadcyla?

I don't know if this has anything to do with what you are talking about re: AI's being used with Kadcycla but according to Lauren's Onc when Ibrance was approved they did it for the Her2-'s in order to rule out her2 variability and fast track it. Now they are running it with Her2+'s in trial. Could this apply to Kadcycla as well?

Cathy
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Cathy

Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
CA125 has declined from 359 to 12 as of Aug.23/18


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Old 06-19-2018, 04:12 PM   #20
Juls
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Re: Treatment after Kadcyla?

Hi Paul

That's interesting. I have asked twice for an AI with Kadcyla. 1st time last year to trial Oncologist & told no! I wonder if that was because of trial protocol!
2nd time was only a few weeks ago when off trial to my NHS Oncologist - again told "no". I think I'll have to mention this again (very carefully!!) & see if I get any reason or explanation.

Have been reading about copper chelation - although most info seems to be about triple negative. Will continue looking it up.

Many thanks

Juls
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