Treatment Questions

Posted By
Julie in SoCal
5/15/2018 7:28pm
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Replies: 8

Good day friends!

Up until the last few days I have been enjoying the NED dance, but unfortunately, last week I found a new intransit met. It is in the same area and it feels like all the the others, so I'm pretty sure it's mel.

Previously, I've had IPI and Pembro and watched various intransits melt away only to have new ones pop up.  After failing Pembro I just had them surgically removed.  No problem.

So my questions for you all:

1) should I just do whack a mole and have them surgically removed, or should I pair surgery with something else?

2) if something else, what?  

3) how big of a range is T-Vec's bystander effect?  How far does it go.  If I zapped my current intransit with T-Vec, would it do a regional mop up? Or would I need multiple intransits and multiple T-Vec injections for that.

3) Do I have any other options?

To complicate things, I have had Non-Small Cell Lung Cancer, so I won't qualify for a trial.

Thank you friends,

I wish you peace!

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

Julie in SoCal - (5/15/2018 - 7:30pm)

I'm BRAF positive.

Thanks!

Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

Bubbles - (5/15/2018 - 8:24pm)

Oh, Julie!  So sorry.  It is such a B!!! to find all your lesions yourself isn't it?  Same for me....but anyhow...

If it were me...and this is just me...albeit with years of melanoma study behind me...in your shoes...I would beg borrow and plead for someone to inject that sucker with PV-10, T-VEC, CAVATAK...pick the poison.  Why?  Because, though I don't think anyone can absolutely answer your by-stander question, (though there are documented patients who had a sub-q lesions injected, only to have that lesion as well as melanoma tumors on internal organs melt away...so that's pretty diverse coverage in my book!!!) I think the chance of benefit is big and the risk is small.  If intralesional therapy fails...you can always cut the sucker out, or - what I would do is then try BRAF/MEK inhibitors.  

Here's some info on intransits:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=in+transit+lesions

Here's some info on intralesionals overall:  http://chaoticallypreciselifeloveandmelanoma.blogspot.com/search?q=intralesional&max-results=20&by-date=true  

Not sure if this helps you much.  Hang in there.  Celeste

Mark_DC - (5/15/2018 - 10:11pm)

Hi Julie,

Sorry for this setback, hope it will only be a small one. Do you only have one intransit? And are worried more will appear?

I agree with Celeste and would give intralesional a try, if you can get it. I am on pembro plus tvec every two weeks and this seems to be an improvement over pembro alone. Tex had great results with pembro plus pv10. Insurance approval was tricky (alternative was difficult surgery) and tvec injections are a bit of a chore, but it seems a good idea and could have an effect beyond the treated area. So i agree with celeste, you might want to push for it.

good luck, you have an amazing story and attitude, i always appreciate!

mark

VinceMart - (5/15/2018 - 10:54pm)

Hi Julie,

Sorry to hear about your setback, you are not alone.  Just tonight I felt another in transit in my scar yet again. I was on Pembro from 1/2018-3/2018 until liver met progression, then TAF/MEK for 7 days until I could not handle treatment anymore.  Had an appt. scheduled to have a ct scan and possible Pembro again next Thursday, now this.  I guess I will be calling my onc back tomorrow to inform them of yet another in transit.  I am hoping TVEC will be offered in conjunction with Pembro.  I wish you all the best and hope to hear your treatment plan, maybe we can compare notes.  Best wishes for continued health.

Vince

Julie in SoCal - (5/16/2018 - 7:16pm)

Hi Mark,

Yes, my new piece of Mela-meat is very, very small. And there's just one on the inside of my elbow.  In the past I've gotten them in twos and threes, so it's possible that this one has a friend, or four that just hasn't shown its ugly head. 

I'll definitely be looking at the intralesional injections. They don't sound pleasant, but then a nurse a long time ago told me, "we're not doing this for your comfort..."  OUCH! Truth!

Wishing you peace!

Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

ed williams - (5/16/2018 - 10:24am)

Hi Julie, I like the advice given so far and another thought is that some of the trials being run at present like Nivo + Lag-3, may become standard of care in the future. Many have had to rotate from targeted to Immunotherapy and back again to get ahead of the black beast!!! Best Wishes!!!Ed

 

Julie in SoCal - (5/16/2018 - 2:27pm)

Thank you friends,

Your wisdom means a lot to me. Melanoma doesn't have to be an isolating disease because others don't get it. You all do!  Thank you!  Thank you! Thank you!

I'm emailing my favorite medical appointment scheduler to see if I can get a closer appointment with the Rock Star.  I'll let you all know what happens!

Meanwhile, I did some quick research, and come to find out that my doc is doing trials with CAVATAK and Pembro / Nivo (I don't remember which one).  AND CAVATAK targets non-small cell lung cancer.  HMMMM could this be a two-fer? Also in reading the trial info the exclusion criteria for previous additional cancers is "no mets within 3 years (with exceptions)".  So yea, I want to know if NSCLC is an exception.  Would make sense to me.  But I'm only a lowly social scientist...

Thanks again friends!

Shalom!

Julie

Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits resected in 2017)

Stage 3a 2017 NSCLunc Cancer VATs; Carboplatin & Pemextred;  radiation

Bubbles - (5/16/2018 - 7:09pm)

Hey!!  That sounds like a winning ticket to me!  Let us know what happens next.  Will be having all fingers crossed that you get a sound plan in place very soon!!!  c