Recurrence pt 5

Posted By
Julie in SoCal
12/5/2018 3:06pm
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Replies: 9

Ok mel kicking friends, It's not official yet, (only the Rock Star can officially pronounce funk and barnacles melanoma, and I haven't seen him yet), but I'm 100% positive Mel's back in the form of two smallish bb sized blobs by my elbow. 

It's been just 6 months since the last recurrence (same place). so my questions is do I keep playing whack a mole and go with surgery again? Surgery was a good answer when I needed to focus on knees.  But then did I just punt the problem down the road and so now I'm dealing with the inevitable? Knees are good though...

So far all of these critters have been in fairly accessible places (under left elbow and arm). So surgery is fairly easy and straight forward (essentially 2 WLE!s) but surgery doesn't do anything to stop the critters the cells that are already there (presuming there are still some mel cells running around) from traveling out of my arm and growing into something more nefarious. Again this is assuming that there are more mel cells running around but this seems like a reasonable assumption.Playing whack a mole with this doesn't feel like a good option.  But maybe it's the best not good option?

I've been looking at clinical trials but most of them have Ipi or pembro, and the RS Doc and I want to avoid these due to the toll they take on my joints.  Has anyone tried ILP? It doesn't sound fun, but then what is? 

Just talking out loud there friends.  Open to all options!

Thank you and peace to you in this wonderful holiday season!

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 - (12/5/2018 - 4:22pm)

Oh, Julie!!!  I am so sorry!  I would certainly be asking about intralesionals...like T-VEC or PV-10.  You can always whack the suckers out if it doesn't work.  But...intralesionals have the benefit of attacking the lesion they are injected into...and creepy by-stander lesions as well!!  

Here's some data:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/04/t-vec-in-melanoma-after-progression-on.html  

There are links within that post and you can use the search bubble for even more if you like.  Fingers crossed that Rock Star will say you're all wrong!!!  Keep us posted.  Love, c

Bradley75 - (12/5/2018 - 5:42pm)

I hate mel.  He likes to keep showing up without an invitation.  I agree with Bubbles.  I just had a recurrence after almost a year of NED.  I decided to go the TVEC route instead of surgery or radiation.  Seems like a great option based on all the information I was able to gather.  The fact that is can wipe out the tumor injected and also wipe out the rest of the bad neighbors that may be lurking in the shadows is what did it for me.  Not sure it is going to work, but it really seems way better than all the surgeries I have had or rounds of radiation I have experienced over the years.

I will keep you in my prayers. 

-Brad

lkb - (12/5/2018 - 9:59pm)

Oy, Julie! I'm in a similar position. Scan tomorrow, but there is this hard little mattress-pea on my neck near prior occurences. Have already had two neck dissections and am not loving the possibility of a third. Still, in fact, dealing with nerve damage from #2. Planning to ask about an injectable solution when I discuss scan results with the oncologist. Will be standing by to find out what you learn about ILP. Sending good wishes your way.

October 2017 primary scalp WLE; SLNB; partial neck dissection. July 2018 recurrence in neck. August 2018 second partial neck dissection. September 2018 started Nivo. December 2018 brain met + recurrence in neck.

 

Casitas1 - (12/5/2018 - 10:37pm)

Dang it! Sorry to hear Julie! Well, I've been through several recurrence surgeries and one of them bought me 5 years! But, they didn't have ILP back then. I guess see what RS thinks. I hear Dr. Essner (Surgical Oncologist) is back. He did all my surgeries and is good. I'll be in to see the good Doc on the 19th. for scans and a chat. Glad the knees are bending again! Wishing you the best, Paul

WithinMySkin - (12/6/2018 - 9:53pm)

Oh my goodness, Julie! I'm so sorry you have to pick the 'best' option - I always hated those tests in school because all you do is get stuck. Hoping you find peace of mind in your choice so you can enjoy the holidays!

Lauren

WithinMySkin

www.Withinmyskin.com

 

Julie in SoCal - (12/8/2018 - 3:26pm)

Thank you friends!

I think my initial "what the heck" moment is over.It told me that I really thought that Mel was done (at least until I"m 85 or so and then he can have me) and so it was a huge shock to find him back.  I'm not sure I"ll ever really get used to the  unpredictability of all of this.

But I have a plan. After Christmas I have an appointment for a scan and Rock Star visit.  If scans don't show any more funk, I'll talk with RS about ILP, TVEC and CAVAKAK, and surgery of course., though I'd rather save surgery and Dr E! to have something in my pocket just in case...

But even in this I'm ok.  I have an amazing family- bio and otherwise and friends all round.  I really wouldn't trade it. - though I'd nuke all cancer off the face of this earth if I could.  It's probably good I can't. Who know what would happen if this social scientist hit the med lab and started tinkering.  No, I'll stick with helping people relate well and find true peace.

Just wanted to pop in again and give a quick update.

Thank you friends.  I hate it that you are in a position to understand what I'm going through, but I love it that you do.

Peace to you during this Holiday Season!

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

jbronicki - (12/9/2018 - 9:54pm)

Hey Julie, wasn't able to respond before due to something funky with CAPTCHA, but I hate hearing that you have another mel, I absolutely adore reading anything you write, it makes me smile.  I have to believe between you, the ROCK STAR, and bubbles that every avenue is covered and a multiprong approach is in the works as you state. 

Social sciences is really interacting with science in amazing ways these days.  As someone that has been more comfortable in the statistical world, I've come to really appreciate the equal importance of social sciences!  It's invaluable in this world of multivariate experiences.  We don't live in a vacuum! 

Many hugs and peace to you as well

Jackie

Jackie <3

Julie in SoCal - (12/10/2018 - 1:57pm)

Ahhh Jackie now you're talking my language!!  Yes Social Science is stronger for it too!  My dissertation used both qualitative and quantitative - but I will admit I will never be comfortable with doing stats (reading them yes, doing them not so much it's just too easy to screw things up!).

Thank you so much for writing. I needed this smile today.

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

BrianP - (12/9/2018 - 10:18pm)

Hey Julie,

Sorry you are dealing with this again.  As always it sounds like you have a good plan.  Hope you are able to enjoy the holidays and then get ready to kick some butt again in the New Year.

Brian