Stage IV NED crew : let's support each other

SandiBeach57

I have monthly labs followed by oncologist visit: Ca15.3, chemistries that include liver enzyme panel, cell blood count.

Every 3 months I have a scan, which alternates between liver MRI and CT/bone scan. I have never had PET scan.

Anonymous

I get the CA 15-3 and CEA tumor marker tests even though they haven’t been accurate for me. Never out of normal range even the first one.

Also get CBC , cardiac markers, routine chemistry, some others, every six weeks.

Vitamin D was tested a few months ago , I had been on rx D2 before that because I tested low at my primary care checkup

B-A-P

interesting. I’ve never seen those on my blood work forms. I’ll have to ask next time I see her (which is likely months from now). I think all I get are LFT, CBC, creatinine , and creatinine clearance. Oh and albumin

Maaaki

Hello ShetlandPony I have remember you from the posts in liver thread from last year when Zarovka was around . I am so happy to see some of the ladies here for a long time. Yes I am treated at big cancer center in Bratislava, Slovakia. But the vaccine is an experimental one not from this hospital, I go to one young doctor in Wienna who collaborates with Next gen oncology group in Duseldorf and they prepared the vaccine directly from my liver met. Sequenced all met, also my blood and found some peptides that can be immunogenic. It should be ideal setting if you are with minimal residual disease or NEAD. I dont how effective it is, but hopefully it works at least for my liver. I am for two years only on exemestan. My MO in Slovakia wants me on it as long as possible, she said even that this met on vertebra is active, if it is the same size like two years ago, I require only radiation (they did not do it two years ago, werent sure if it is met or benign lession) and not new treatment, but I am afraid to stay on it. I would prefere Ibrance, even though my F1 said amplification CCND1 equivocal, as I understand right it means may be work or may be not.

And it is so great that you are NEAD, my markers are also accurate and I can predict that something is going on even in the normal range.

Bliss58

B-A-P, I am also followed by CT along with a bone scan. It was every three months, but I asked my MO if we could go 4 mos., 3x a year instead of 4, and she agreed. She also said that she would only order PET if the CT showed something concerning. My latest scans were still good, so now she's reduced Xgeva shots from monthly to quarterly.

Elderberry, wishing you good luck with chemo Friday! As much as I dreaded it, too, it turned out to not be as bad as I had imagined. I hope the same for you, and I'm glad I did it.

Cheers, to all the good news, and good to see you back, Shetland.

B-A-P

thanks bliss!

No bone scans for me yet. I imagine that might happen once I get my ovaries removed and get put on an AI. I’m not sure when else they do them unless there’s no bone Mets. This after treatment time is new to me

Andi67

Hello everybody! I am so sorry that it took me a while to report back. My MRI showed NO CANCER (yay!) - just significant "degenerative" issues, caused by the old lesions as well as some other issues I had prior to being diagnosed. I am getting a cortisone shot this Friday and starting some PT in June, but in the meantime have felt much better and have returned to Yoga, walking and played in my tennis match last Wednesday - another one this Wednesday. Thank you for all of your good thoughts and positive vibes! I was really starting to worry, so it was a big relief. I do feel like I need a "long term plan" even though I don't know what "long term" looks like.... thinking I need to focus on yoga and swimming - anything to stretch myself out... and probably hang up my running shoes.  

Welcome back to Shetland Pony, and glad everyone else is doing well!

XO

Andi 

Karenfizedbo15

that is SUCH good news Andi67!

Almosthere

I’m NED and HER2+ but I want everyone to be the same. 😍 May we all see age 90!

!

Heidihill

Great news, Andi!!! 

My long term plan is to declutter as much as I can before we have to move. That was supposed to be in February but it's now postponed indefinitely, hence it's long term.  Maybe I will look into volunteering somewhere as well.

LoveFromPhilly

here’s to the NED crew!! And congrats Andi! I love your plan of yoga and PT. I get massages about 2-3 times a month too and that seems to help a LOT. Also, just taking the dang Advil/Tylenol/or aleve regularly is helping. I fought that for a long time. These meds can really make us feel crappy physically.

I have scans next week. Not nervous (yet!). I feel like I would be INCREDIBLY surprised if there were any signs of progression. Just based on how I am feeling and my energy levels being so good.

Wondering what my liver will look like as I just spent 10 days in Italy and I didn’t hold back from enjoying all the amazing wine and champagne there!!

Love and hugs to all!

Philly

snooky1954

Best of luck on your scans Philly..  they will just fine if you breath. (hehe)

Italy and you talk about vine?  Nothing wrong with that but hope you indulged in all the pasta dishes as will. So glad you got a physical/mental break from our friend (errrr) cancer.

HUGS

jackboo09

Great to get this news Andi!

Liz x

SandiBeach57

I just bought 4 bathingsuits.

My goal is to outlive them.

Anonymous

SandiBeach57 - I love this! I bought a few new suits last year, think I will make this a goal as well. Kind of a dual goal, use the suits so much that they wear out soon, as well as doing what I can to not let myself wear out too soon.

Chemokaze

Yay! My PET and MRI Lumbar spine are all clear!

Cheers

Heidihill

Yay, Chemokaze!

Bliss58

Wonderful news, Chemokaze; congratulations! BTW, I have always loved your handle.

Vevs

happy days Chemokazee!! Very very happy to hear your news

LoveFromPhilly

We can live with this disease!!!

Undefeated Air Hockey Champion at the Jersey Shore!

SandiBeach57

I want to look like you.

LoveFromPhilly

awww Sandi!!! I only post my “best” pics and delete all the rest 😂 very vain here!

We are all beautiful in our own ways - not that we all feel that way, but hopefully we can find inklings of feeling strong and beautiful now and again despite this disease. I felt pretty badass after kicking my buddies butt in air hockey over and over again lol!!!!

Heidihill

You are hot and cool at the same time, BadassfromPhilly

Tina2

LoveFromPhilly, you are smokin'.

Its been a long time since I've been down the shore. When I was a kid we went to Ocean City and Wildwood.

Please have a Pork Roll sandwich for me!

Tina

Vevs

I’ve been to Belmar many times and loved it there, you look fabulous Philly, and more importantly you look happy and healthy. That’s all we can ask for.

Love from sunny Wales to you all xx

LoveFromPhilly

Awww Hi Heidi! Thanks for the props!!

Tina - OMG I JUST tried a bite of pork roll for the first time! Can you believe I grew up in Philly and never had it? Had I gotten your message two weeks ago, I wouldn't have understood how funny your recommendation is! Not only did I get to taste it, but I learned about the New Jersey history of it too. And yes yes yes I am in Ocean City right now! Just got back from some more fierce air hockey competitions in the 7th Street boardwalk arcade! I am still the champion I hold this title proudly.

Vevs - yay to it being sunny in Wales! Is it usually sunny there? I imagine it as a beautiful, lush green place where there are often clouds but it is brilliant when the sun peaks through? Is that accurate? I would love to visit!

And one thing I guess I should clarify, I haven't been diagnosed as NED or NEAD. I really would love to be! I keep waitinf for my MO to say the magical words! But everything is stable as far as we can see the cancer has not progressed. Some increased uptake in the bones of the tracer that was seen with the nuclear bone scan last month, whatever that means! My MO told me not to be concerned. I will take it!

Healthy and happy is important! I am doing my best! Just chowed down an incredibly delicious lobster roll full of butter, mayo and on white bread LOL! YUM!!!!!!!!! Was so good! I used to never eat like this and now I am like, screw it! Let's live and enjoy life and be happy!

Karenfizedbo15

All these glamorous women in here! Wouldn’t it be a shockerfor Joe Public to see what a stage IV patient ACTUALLY looks like in real life. Long may we continue!

ShetlandPony

Thinking about your comment, LoveFromPhilly, about feeling strong and beautiful now and again. When I look in the mirror in the morning I am shocked by what eight years of cancer treatment has done to me. I look old and tired. But when I stand up at the end of yoga class, I feel strong. And when I dance, I feel beautiful.

Andi67

Shetland Pony, I think the mirror is probably lying, and I love that you feel strong and beautiful! There is that saying - "it's not about how you look, it's about how you feel"... which prior to cancer I think I was 200% in disagreement with..... but now.... when you feel strong and beautiful you ARE strong and beautiful, so keep dancing!

XO

Andi

ShetlandPony

Thank you, Andi for your lovely note. You know, in my dance form there are loved and respected older dancers whose strong and beautiful spirits shine through and captivate people, because they have cultivated many virtues within. Their dancing comes from their whole being. I think nurturing the strength and beauty of the soul is within anyone’s reach, within my reach in spite of everything.