No longer in NED.

[Casual]

I am freaking out right now. Right before I decide to celebrate with friends for my 5 year milestone, the cancer is active again and I feel defeated. I want to cancel the party next week. It’s all very overwhelming.

I am ER/PR pos, HER2 neg. I’m in a lot of pain and although I am awaiting a chest, abdomen, pelvis CT for later today, I truly fear organ mets. Ibrance, letrazole, zoladex and calcium have been my primary med regimen.

Yes, I definitely slacked off on my healthy eating lifestyle. It’s so had to maintain as a single mom while trying to give him the best like.

So far my plan is to intermittent fast and try to stave the cells. And get back on natural path and exercise, until I get more info from my doc.

Tumeric, black seed oil, super greens, and I just added Turkey tail mushrooms to the mix.

Do you have any suggestions overall? Recommendations on what to add to my morning drink? Treatment options?

Thank you in advance.

[Nocillo]

There should be plenty of treatment options. I’m on my third line of treatment and I know there are many more. Keep your party! I don’t watch what I eat or take any supplements. So, can’t help you there.

[Adele_Julia]

Get the book on Amazon called How to Starve cancer by Jane McClelland !!! Natural supplements plus some prescription meds to block the pathways. Also join her group on Facebook. Good luck !!

[NPmary]

My advice is PARTAY! Not that long ago a five year survival was rare, people were lucky to be among the living after 3 years. Next, your awaiting scans, you don't know what your facing. Something you need to know is whatever a scan shows - you, my dear have already been living with it and you may also need genetic testing to determine the best treatment forward.

Soalot of deep breaths, alot of self care, alot of self forgiveness for any and everything real or imagined.

Have FUN with your son.

Have fun for me (still here 6 years 3 months since MBC diagnosis, on 2cd line of treatment since 5 year mark).

Remembering these things help me.

Wishing you comfort, peace, love and many parties ( you know you are allowed to celebrate often and in many ways. 🌺❤️🌺 Mary

[Burtie1 in reply to NPmary]

Party but no alcohol for you.

[Discocat]

I'm sorry to hear of your suspected progression. I don't mean to belittle your situation in any way but only hope to reasure you. We all hope to reach NEAD or stability but for some this never happens and in general progression of some sort is unfortunately inevitable. There are so many treatments and new medications now available that this is just a reboot...an adjustment to your treatments that will soon become habit once again.

Don't beat yourself up too much about your lifestyle/diet. Yes it's great to try and be healthy but don't let it be so dictating that it takes over your life. Although there are many books advising to eliminate sugar to fight cancer....in our case our cancer is hormone based...which is why 2 of your treatments are hormone blockers...I'm on the same course of prescribed medications as you with the addition of 3monthly Zometa infusions.

I bet looking after your son keeps you on your toes and generally active already also.

So my advice is to enjoy your life and time with your son, have fun and trust in your medical team to take care of this next step in your treatment plan.

Best wishes to you

Zoe xxx

[Kerryd22]

I can only agree with everyone else. Have your party. My five year party got stopped in its tracks by the covid lockdown we endured in May 2020. A couple of friends came down as there were exceptions to the lockdown so I arranged for a couple of odd jobs to be done and then they stayed for a celebration. I had a proper celebration six months later.

I’m on my third line and I started that third line within 12 months of being diagnosed. Up until the last scan I have never been NED. I’m still not but the breast tumour has shrunk to less than 5mm and can’t be seen. And many bone Mets have healed. I didn’t expect to still be here on the same treatment I started in 2016 especially as in 2017 when I was also taking Afinitor along with the Exemestane, my oncologist predicted that the tumours were advancing towards my liver. It turned out that I had a rare side effect from Afinitor and once I stopped taking it my liver numbers returned to normal. And rather than progression I’ve seen regression on my scans which I never thought would happen to me

Treatment, even successful treatment, consists of good days and bad days and a few road bumps along the journey. Don’t stress over what you think is happening. Without proof of progression from a scan anything else is a guess. My rib cage is hurting a little tonight but I’ve been standing at the bench baking and my bone Mets do not like that activity. Last week I was painting and decorating and I was in no pain at all. Some days are diamonds and some days are stones as John Denver said, probably just before his home made plane fell out of the sky. 😢

Plans can go awry but don’t let anything stand in the way of a good party and a great reason to celebrate. 🎊🥳🍾

All the best

Kerry

[Gingerann1]

Sorry to hear about your possible progression. I too am waiting for that other shoe to drop. Have been NED for 18 months now, still on 1st line treatment and know it’s just waiting to rear its ugly head somewhere so the mind games are definitely part of the journey even when things are going well.

I learned that my BC had returned metastatic on the day I was celebrating 7 years in remission from my orig BC. It was so shocking to me and such a gut punch. Now that date has a different meaning but almost 3 years later I’m still here to tell the story so I say party every chance you get! What you’re celebrating may be different but you’re still here to tell your story…

[Praising]

Hi. I just had my ct and got my results. I’m very similar to you. 6 yr Ned I’m on exemestane and xgevia. I have some enlarging lactic lesion in the right sacrum. Not sure what it means. Praying for you. It’s always what if….each time we scan. Let me know.

[Praising in reply to Praising]

I’m also doing intermittent fasting and trying to eat clean paleo.

[hurricaneheather]

celebrate you! follow through with that party. be surrounded by the love from friends and family. there will be should/could haves. i hope you are able to find the positive in each day. all that exists is ‘this’ day. may you be at ease.

[Ski2sea]

Enjoy your party. My oncologist always tells me there are so many treatment options and more are always coming. I’ve read so many different ones just on this site. Sending hugs your way.

[Kcap430]

Celebrate YOU! Go enjoy the people you cherish. It does more for the mind and soul than any of these meds we take! Have the best time and let tomorrow take care of yourself 💕

[Gonnawin]

I agree! Have the party and have absolute JOY in that party! I too got stopped just short of the 5 yr mark! I was down hearted for a few days but then I got angry. Angry at myself for not sticking to healthier eating, and angry at the unseen cancer cells that were trying to beat me up. So, I fought back. My first line of treatment was Ibrance and Letrozole. Second line just started about 4 months ago is Verzenio and Faslodex. I'll have scans again in Nov. Please try to enjoy each day and view the setbacks as a challenge that you will not allow to win! Stay strong all my friends! It's tough but WE ARE TOUGHER! 🌺