Stage IV NED crew : lets support each other
Comments
-
Thank you everyone for the WHOO HOO's and YEE HAAA's!! Hope I can stay NED for a long time
!!Amy....let us know how your PET scan comes out. Praying for good results for you!!
Julie
0 -
Congratulations to all on good scans. It's so great when our oncs give us the results right away.
Question for you fellow NED people: How often do you get scans, exams, and tumor markers? I have been getting monthly exams and TMs, and scans every three months. Everything has been normal for about nine months. The TMs have been accurate for me. The exam includes watching the spot where a breast tumor was--it is our canary in the coal mine. My onc said I could have my next PET-CT scan in four months instead of three (when I mentioned lots of radiation), and see her in two months instead of one. This new schedule also means tumor markers in two months instead of one. I can't decide if I am comfortable with this. I could ask to keep the same frequency of monthly exam and TMs with three-month scans, or I could ask for monthly TMs and/or exams along with four-month scans. It is nice to have fewer appointments and less radiation. On the other hand, I want to jump on it fast if anything comes up, especially since my liver is the concern. Opinions?
0 -
ShetlandPony, My PET/CT's are annual - in fact had mine today so should know something within a couple of days. I get blood work every three months which includes tumor markers.I see my onc a week following the blood work so she can perform an exam, review my blood and discuss any SE. My understanding about TM's is they can vary based on several factors, therefore I would not want them monthly as any fluctuation would most likely cause sleepless nights and worse-case-scenarios in my head. But that's just me. In addition, so far I only have mets to my bones. I imagine liver mets probably should be monitored more closely and differently, but I really don't know. I guess the bottom line is how much do you trust your onc?
Hopefully you can get to NED soon and settle in with annual scans, soon.
My best to you.
Amy
0 -
I have a brain MRI every 4 months and CT scans as needed (as symptoms arise). This is working really well for me so far. Little intervention is needed. With 2 children and a full time job, that is a necessity.
0 -
Well my dance card with NED is all filled up - just found out today my bone mets are back. My onc wants to meet next week to discuss a plan so hopefully we'll find another combination of drugs, treatments or dance moves that get me back to dancing with NED again. Just so bummed, but I had 26 months on Femara before it let this damn cancer sneak back into my bones.
Shetlandpony, I hope you're doing okay.
Amy
0 -
Amy - as I said on the other thread - bugger. Sending hugs
0 -
Oh, no! Sorry to hear this Amy. I hope the next treatment gets you back to NED.
0 -
Amy-drat and double drat! I have a feeling you will be back to NED in a flash. Don't know why, but I just feel that way.
0 -
Screech, Heidi, Kiwi, Linda and everyone else - I agree! NED and I will be courting again, hopefully soon. The nurse called this morning when I requested a copy of the radiologists report. She suggested I may not need chemo, but a change in my hormonal med, which would be wonderful of course, but we'll see. I have an out of town wedding this weekend which I'm hoping distracts me for the time being.
Thanks again for the support.
Amy
0 -
Amy!0 -
Amy,
While the news clearly stinks, I too have faith that new tx will have you back on track soon.
Caryn
0 -
AmyQ, I hope your next treatment is easy on you. When do you see the doctor?
Good point. I do trust my onc. My NP said I could keep doing monthly TMs if it will help me feel more secure, so I think that's what I will do.
0 -
Sending you a hug, Amy. Hope things settle down well for you soon. Boo
0 -
Hi guys, if you could talk me off the ledge please...my CA15-3 tumour markers have alway been low and a bit unpredictable. But a blood test two weeks ago showed a jump from 32 to 48 in a period of 8 weeks. My onc is concerned not at the values themselves, but at the fact that the jump is about 50% of my previous level...he says this % increase in a short period is worrying him...he's shoving me in a ct scanner later today and has also ordered an endoscopy as my last scan showed hiatus hernia...and he seems keen to check out what is going on in there...sneaky lobular...I'm really worried that something has woken up in my liver again...ugh...anxiety...I have always had trust issues with the letrozole I take as Arimidex and Aromasin failed me....meh. Anyone else had tumour markers jump like this and then settle down again?...I am hoping hoping hoping this is just a blip...
Boo :-(
0 -
Congrats to Caryn and TexasRose!
Amy, I hope you have a lot of fun this weekend and feel some relief when you start with the new treatment. I'll be thinking of you.
0 -
Boo, I hope your tumor markers are just a blip too. I've heard there are many factors that can change them practically overnight, however I don't know what these factors might be. Just know that I and many others are there for you.
Thanks teacher - after finding myself anxious and worried about a recurrence, I've decided to schedule as much time as I can with family and friends, therefore plans this weekend are to go apple picking and enjoy all that the apple orchard and farm have to offer with 4 of my 6 grandchildren, daughter, her husband and his mom. I'm trying to create memories that my grandchildren (the youngest is 1) will remember after I'm gone. Although a 1 year old will not have memories just yet, he'll have photos and I hope to have a few more years left where he can remember.
Enjoy the weekend -
Amy
0 -
I hear you Amy, though in my case I'm trying to fill my 5yo and 8yo with love and memories. I want them to keep me with them.
I am going on a overnight trip with my son's school this weekend. I'm wondering how to do idle chit-chat with folks I don't know well who don't know my illness. Guess I can talk about the weather, what they are wearing, their work, the kids. I'm up to my ears in cancer research on my own but that isn't fun to talk about
I get my next brain MRI on 10/27, and a lumber ouncture on 11/2. Right now I'm only taking targeted supplements and chinese herbs, no oncology drugs. I'm expecting to start treatment of some kind in the next couple of months, pre-emptive if necessary.
I'm trying to enjoy my body being the healthiest and with the least disease burden in years. Even my PMS (yes, I got my period back and I'm HR- so that's okay) has subsided since my zinc and magnesium levels have improved. My libido is up too, go figure what a little correction of a copper-zinc imbalance can do.
Peace,
Ann
0 -
Hello all, the tm investigations continue, with another blood test next week to see if they have moved in either direction - I am hoping for down, naturally. Meanwhile, in other news, an endoscopy ordered by my onc has revealed a stomach ulcer and barrett's oesophagus - both conditions caused by three lots of chemo in four years and many other aggressive meds alongside, according to my onc. Says my gut cells just didn't get time to rejuvenate properly and each treatment has done more damage. So more meds to hopefully get rid of the ulcer and another endoscopy to look forward to in six weeks. I'm pretty philosophical about it all - no one knew that in trying to save my life that i'd get other issues. its just one of those things, and I remain grateful for the primary cancer treatment. Sigh. Boo.
0 -
Sorry to hear about the gut issues, Boo. I hope the proper meds and time will heal those cells and the tms go down. Maybe the two are related. Agness, that is something to be grateful for and enjoy, having reached this point and possibly seeing even better times ahead. I would have never thought it for myself but here I am, feeling better and better, year after year. I still have side effects from radiation and aches and pains from the lack of estrogen, but on the whole I'm the picture of health. ((Knocking on wood))
We went for a holiday in the southwest of France. I love the sea even though it was not beach season anymore. We walked to this island fort at low tide, it was the last fortification built by Louis XIV.
0 -
Good luck with the tummy issues Boo. I haven't done chemo and my tummy is pretty well trashed, so I can only imagine what you're going through. Hope they get it resolved quickly!
Beautiful picture; what an amazing trip that would be, Heidihill. Thanks for sharing it!
0 -
Good luck, Boo. I hope your stomach issues resolve quickly and your TM's go down.
Love the picture Heidihill!
0 -
I'm in!! I've been NED for three years and two months now. Hoping for many many more years of NED!
0 -
Congratulations, lanagraves. NED for three years and two months is great. I wish you many, many more years with that status.Woohoo!
I read this thread all the time. It helps to keep me thinking positively. I hope that I will be able to join your club someday.
Lynne
0 -
Many here have donated . Thank you !........Wandering around and cheerleading again
Donate today, make a difference directly in all our lives. By supporting BCO, we support each other. Thanks and Hugs
https://community.breastcancer.org/forum/110/topic/834331?page=1
Link to the mainboard donation page
0 -
Yay-Lana's here! Heidi-I love, love, love you quote about feeling good! Going for my quarterly appointment tomorrow-hope my blood work came back good! Hope Boo, Amy, and everyone is doing better!
0 -
I've been happy dancing around the kitchen!! Biopsies of my stomach etc all came back clear, and the consultant said ulcer is small and will go...so hurrah! So pleased, just did not need the extra worry of yet another thing to have to deal with. Thank you everyone for your kind support, it means so much. Just waiting for results of blood tests now, hope those dang tm's are behaving themselves...fingers crossed.
welcome to the thread Diana and 50s girl...I felt warm to my heart when i read that you come to this thread for positive thinking, support is what it is all about - please stay and hang out with us, everyone is always welcome, and hopefully you'll get your NED badge soon too. Kiwi, Heidi, thanks for the kind thoughts. It means a lot.
The dancing Boo :-)
PS I've been happy dancing to "There's a guy works down the chip shop swears he's Elvis" by Kirsty McColl. My daughter loved to bop to this when she was little. So everyone, what's your happy dance song?
0 -
I haven't been keeping up with this thread, but am happy to hearthat many of us remain NED 😊
0 -
Boo, my happy dance song is by Sonny & Cher, I Got You Babe - an oldie but goodie for me.
Amy
0 -
Boo, happy dancing with you! Don't really have a special song, so any song will do. I did have a favorite exercise song: I will Survive by Gloria Gaynor.
Screech, don't keep us in suspense too long....
0 -
Great song Amy! And Heidi, I went to a party in March, my hair was about 1cm long so it was pretty clear I had been going through treatment. There was a disco. Now, I'm not much of a dancer, but something in me was trying to get out that night - I asked the DJ to play I will survive, and I danced and danced round the floor and sang my heart out - go, go out the door, just turn around now, you're not welcome anymore ...of course I was flinging cancer out of my life and singing that I will survive! It felt great, and my friends dancing with me knew exactly what I was doing, and joined in with me. It was a great few minutes, and very therapeutic!
Boo :-)
1
