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Old 09-05-2018, 10:40 AM   #1
Senior Member
Join Date: Oct 2014
Posts: 45
DS-8201A Trial

Hi Friends,

My wife is enrolling in the ds8201 trial. However, prior to trial the doctors want her to go through a list of tests. I can understand CT, Brain MRI etc. However they are asking her to get an appointment with Ocular oncologist. I am not sure why though the DR explained it to me. Will it damage the eyes or something?

Anybody on this trial here and is that appointment really necessary. ALso what are the sideeffects?

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Old 09-05-2018, 06:35 PM   #2
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Re: DS-8201A Trial

I can't speak specifically to the trial you mention but my chemo drugs were a/c and taxol. I can't remember if it was when I was on the a/c or the taxol (I think it was taxol, just not positive) when I noticed some vision changes. I had had surgery the week before I started chemo and so I thought I had done something to cause the changes in my vision but I still mentioned it to my oncologist and was told it was a side effect of the chemo. Apparently it causes the "lens" in the eye to move. What happens is sometimes I see perfectly fine and other times I have blurry vision - sometimes it's only one eye, sometimes it's both. I've been told it's permanent.

As I said, I can't speak specifically to the trial you mention but I wonder if it's something similar to my experience and maybe they just want to be able to track any changes. It can't hurt to have a snapshot of what everything looks like before so they can track the changes.

Hopefully someone else will have more direct experience to speak to your question but that's my two cents worth.

Good luck and keep us posted on the progress of your wife.
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Old 09-05-2018, 09:33 PM   #3
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Re: DS-8201A Trial

I looked up the drug. It is Herceptin conjugated with a Topoisomerase 1 inhibitor. This class of chemo drugs can cause ocular problems. Just a pharmacological guess but it makesd sense. Ask the doc

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Old 09-07-2018, 04:48 PM   #4
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Re: DS-8201A Trial

Getting a baseline eye exam is all the rage, and all the cool girls are doing it. Okay, seriously - it is the new standard of care with trials now. If you re-read the consent forms, I think it is mentioned as a rare side effect. Anyhow - since I just looked in to a bunch of trials, including DS8201, I noticed that baseline eye exams are almost included with them all. That drug is so promising - hoping for wonderful news on your wife, soon. I opted to try ZW25, no chemo component and hopefully for me it will be enough to keep me in the game!
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.
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
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.
(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
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
SoCalGal is offline   Reply With Quote
Old 09-14-2018, 09:46 AM   #5
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Join Date: Oct 2014
Posts: 45
Re: DS-8201A Trial

Thanks All,

The scans came out okay. Brain clear, CT clear except for insignificant increate in lymph nodes. Eye exam clear. My wife had her first infusion of DS-8201 yesterday. So far nothing major other than nausea. However the first day of infusion was really long. The infusion itself was 90 min, they however collect blood samples at intervals of 1hr, 2hr, 4hr and 7hr from the start of infusion.

Keeping our fingers crossed that this resolves her skin mets.
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Old 09-17-2018, 08:31 AM   #6
Donna H
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Re: DS-8201A Trial

Fingers are crossed!
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Old 09-17-2018, 09:33 AM   #7
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Re: DS-8201A Trial

Thanks Donna, The only thing that's bothering her right now is extreme fatigue and nausea.
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