How are you Celeste?

Posted By
SOLE
3/13/2019 10:39pm
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Replies: 14

With everything you have been through, melanoma super advocate and survivor and «colon» cancer (forgive me, I forget exactly) survivor... How are you?

Bubbles - (3/15/2019 - 8:43am)

You are very kind to ask after me, Marc.  I am well.  Just hit the 6 month mark post the ex-goblet cell adenocarcinoma of my appendix.  Don't blame you a bit for not remembering that gobble-de-gook!!!  The first couple months I had to look at a paper my B had written it down on to remember it myself!  And basically, no one knows what to do with it, other than treat it like colon cancer, so that's what we did and what we may as well call it!  I reference it as technically diagnosed on my blog and such so that other poor souls who are so afflicted may find the material we have gleaned if they are interested.

I completed CAPOX hell (the combo of oxaliplatin IV and capecitibine orally) at the end of December.  After two abdominal surgeries, malnutrition with significant weight loss, and all the side effects from the chemo...the past 6 months have been "interesting" to say the least!!!  HA!  I started back running (a euphemism for moving ones legs ever so slightly faster than walking) in January.  I am slowly getting stronger, now doing 2 miles most days along with arm weights and core work (sit-ups, push-ups and planks).  I have been thrilled to once again be here to see signs of spring in my yard.  I have been blessed by the love and kindnesses of dear ones near and far.  I am working through some very weird colitis episodes and arthralgias that it seems the chemo has caused.  (I had pretty significant joint pain with my immunotherapy that had gradually resolved but seems to have been re-flared by this process.)  I am happy to report that I no longer feel like I am walking in clown shoes, as the burning and crazy feelings caused by the neuropathies in my feet are much better, as are the sensations to my hands, with only the tips of my fingers remaining numb.  I have to admit to using that to my advantage as I pick up things straight out of the oven while my husband freaks out in horror!!!  A girl has to have some fun!  HA!  I will have my first follow-up scan for all this at the end of the month and recheck with my onc at the beginning of April.  Such craziness, right???  

Hang tough for all things in your world.  Thanks so much for helping out here.  Your experiences and all that you have learned through them are of great benefit to those walking in similar melanoma shoes.  

Ever yours, celeste

WithinMySkin - (3/15/2019 - 10:44am)

We're all rooting for you, Celeste!! Praying you have clean scans at the end of the month!!

Lauren

WithinMySkin

www.Withinmyskin.com

 

mrsaxde - (3/15/2019 - 1:12pm)

So glad you're feeling better! I hope your scans bring good news. You're a beacon of hope for all of us.

-Bill

sing123 - (3/15/2019 - 3:24pm)

So glad to hear that you are feeling better. AND moving along with humor. Stay well. 

Cindy

Diagnosed April 2018; Stage IIIc; 1 excision on head, started immuno (Opdivo) May 2018; new spots Oct. 2018; second surgery; continuing on Opdivo

MarkR - (3/15/2019 - 4:47pm)

Wishing you all the best for the forthcoming scans - you do so much for everyone else - you truly deserve some good results!

best wishes

Mark

lkb - (3/15/2019 - 11:43pm)

Celeste! Wishing you a happy spring (in your step, in your yard) and excellent scan results.

October 2017 primary scalp WLE; SLNB; partial neck dissection (PND). July 2018 recurrence in neck. August 2018 second PND. September 2018 started Nivo. December 2018 SRS for brain met.

 

SOLE - (3/16/2019 - 2:12am)

I can only hope I can share my story as long as possible and you have to be thanked much more than I for everything that you do here and on your blog. Let us be of service. And love. And as you often say: I wish you well. I wish you well Les. xxxxxxx

SABKLYN - (3/17/2019 - 8:02am)

Glad you appear to be through the worst, Celeste.  As the leader of our little Pirate ship, you have brought hope, knowledge and your warmth to so many in distress.  Prayers for contnued good news, my friend!

ed williams - (3/17/2019 - 9:06am)

Aye Aye Captain Bubbles, what adventure to you have in store for us today???

DZnDef - (3/19/2019 - 1:04pm)

So glad you are doing well, Celeste.  Sorry you had to deal with a second cancer (like one isn’t enough).  I don’t doubt it’s been tough but I expect you did as well as anyone could.  I am considering becomming a rattie myself these days.  My doc is pushing me towards a phase I trial on a reformulated CTLA4 (new and improved ipi/Yervoy essentially.). At this point, I am not opposed to trying Yervoy or a new version of it but phase I is the really spooky bit.  Anyway, I’m glad you are currently doing well and continue to share your wit and wisdom on this board.

Cheers!

Maggie

Maggie - Stage IV (lung mets unknown primary) since July 2012.  Brain mets September 2016.Taf/Mek, gamma knife, Keytruda resulting in clean brain scan and tiny remnants in lung as of July 2017

Jubes - (3/15/2019 - 10:21pm)

Great to get an update Celeste! Hope you keep working through those issues and look forward to hearing about a future trip to Italy! XX 

jbronicki - (3/17/2019 - 10:25am)

You are simply amazing Celeste.  Gobble Gobble those goblet cells!  I literally picture Ms. Pac-Man when I'm thinking about you getting rid of this from your body.  Hoping you a beautiful springs filled with everything you love. 

Jackie <3

Bubbles - (3/17/2019 - 12:52pm)

Arrrrrgh!!!!!!!!!!!!!!!!!!!!  Hee hee!!  You all make me smile and light my way. 

I would LOVE to be Captain of a Pirate Ship!!!  We would all be aboard for the most amazing trip into beautiful lands with lots of 'Yo ho ho's!!!!!' and barrels of rum (My dear Edster!!! HA!!) and magical wands instead of swords and incredible chefs would bring delectables from foreign lands (or the best cheese burgers ever with perfectly crispy fries) for us to eat on deck whenever we wished and the sails would be made of ethereal fabric (all blue!!!) and we would have a band (not like the orchestra on the Titanic...though....YIKES!!) and Jubes would play and treasures would be discovered - in heavy chests filled with gold doubloons and ancient scrolls inscribed with long forgotten cancer cures and the secret to life....at which we would all laugh, knowing we had discovered it already...and the stars would shine ever so brightly on the water each night and sea turtles would lead our way and....  Yes!!!  It would be magical!

THAT is our adventure today!  Enjoy!!! Much love, les

ed williams - (3/17/2019 - 1:43pm)

Reporting for duty Captain!!!! Sorry to bring you back to earth but here is a pretty good nature article on Genomic correlates of response to Immune checkpoint blockade. It is for cancer in general not specific to melanoma. https://www.nature.com/articles/s41591-019-0382-x