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supportwife 09-05-2018 10:40 AM

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?

Thanks

Lucy 09-05-2018 06:35 PM

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.

donocco 09-05-2018 09:33 PM

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

Paul

SoCalGal 09-07-2018 04:48 PM

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!

supportwife 09-14-2018 09:46 AM

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.

Donna H 09-17-2018 08:31 AM

Re: DS-8201A Trial
 
Fingers are crossed!

supportwife 09-17-2018 09:33 AM

Re: DS-8201A Trial
 
Thanks Donna, The only thing that's bothering her right now is extreme fatigue and nausea.

SoCalGal 09-22-2018 10:48 AM

Re: DS-8201A Trial
 
I have a friend who started the trial this past Friday. Her nausea seemed to pass in about a day or two so hopefully will be the same for your wife. I am excited about this trial - the results have been so hopeful :)


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