Another In Transit?, Discouraged

Posted By
VinceMart
5/16/2018 8:19am
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Replies: 5

I had been on Keytruda for 3 months then liver progression, then TAF/MEK (short stay due to side effects), now I feel another in transit in my scar.  These in transits seem to keep popping up in my same scar area eventhough I have had 2 WLE and CLND.  Immunotherapy and Targeted Therapy don't seem to be working either.  I am getting discouraged trying treatments only to to see more mets and progression.  I have a CT Scan and appt next week, need some positivity from long term Stage 4 warriors on this site as I am becoming discouraged with what seems like a downhill battle for me. 

Hi Vince,

Sorry for what you have been through and may be facing.  I know you saw what I put up for Julie...and I think intralesionals might be a good option for you.  However, there is also something called isolated limb profusion that you might want to talk to your doc about: 

 http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/01/chemo-via-isolated-limb-perfusion.html  

I'm not sure what your docs would think about it for your condition, but I think it is at least worth consideration.  (Your doc could always get the entire article and discuss it with the study authors!)  This type of therapy is used to treat sarcoma.  Moffitt was also doing work with it for melanoma when I was there.  I did find this:  https://moffitt.org/cancers/sarcoma/chemotherapy/isolated-limb-infusion-ili/

And this:  http://hillman.upmc.com/cancer-care/surgical-oncology/koch-regional-cancer-therapy-center/treatments/isolated-limb-perfusion 

Not promoting either facility, necessasarily...but....  Not sure how much this helps you, but I wish you my best.  Celeste

Hi Celeste,

Thank you for the reply.  I have lurked on the board for a long time reading valuable information from you and Ed.  I have learned more from this site than anywhere else.  I appreciate any input from you all as I find it best to learn from others experiences.

Thanks again,

Vince

Oh yea, Vince!  I get it.  You're cruising along in your "new normal" and then bam one of these suckers pops up and no matter how tiny it is or how many times it's happened before, it rocks your world.  It is discouraging. Melanoma is perverse!

But take heart! There are others standing next to you and you have options. This in between / liminal space sucks- so be kind to yourself.  I try and look for a way to help or serve someone else (like pay it forward).  I don't think it changes my place in the Universe (as I am already secure in my relationship with God), but it gets me not think about me and that changes me. Boy there's a lot of mes in that sentence. Maybe this will help the wait?

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

Hi Julie,

You got it!  Exactly how I feel, everytime one of those little buggers pop up it feels like the first time.  I appreciate your post and positivity!!

Thank you!!!

Vince

Hi Vince.

I'm sorry that you have to go through this.   My mom has intransit disease and has been receiving T-VEK injections at Mass. General in Boston.   They inject directly into the tumors.  The injections are a mutated Herpes virus and after 4 months, she has had complete response. 5 intransit tumors melted away.    They combined her treatment with Pembro which alone failed her after 15 rounds.   It's worth trying.  Worse side effects were flu-like symptoms from the injections, but Tylenol helped with that.   She is 85 and still going strong.  I wish you my very best.   

Elsiegirl13