Is anyone here in remission at the mo... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer
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Is anyone here in remission at the moment? Or NED?

If so, do they keep you on treatment? And are you doing anything other than taking the mainstream drugs?

I’ve just started soursop juice and THC.

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Hi there

We will always be on treatment I’m afraid

I’ll look up soursop juice as I’ve not heard of that

All the best

Barb xx

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I am on Ibrance and anastazole as maintenance meds. I have been NED for 18 months.

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Do you mind if I ask where your mets were?

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I have endometrial cancer : er+ and pr+ and her -. After my hysterectomy and brachytherapy , I had a recurrence in my pelvic lymph nodes (had 6 months of radiation and chemo), then six months after that treatment I had a tumor in my stomach muscle which was a contamination from the hysterectomy. My oncs hope I can stay on Ibrance for a few years before the next recurrence.

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My onc has kept me on the same treatment ( still taking Ibrance 125mg and letrozole ) and so far I have only taken the mainstream drugs and no supplements . 🤞Good luck ! x

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Are you NED?

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Yes , according to my last 2 six monthly scans , but I am still very cautious as I realise that cancer cells are very clever and can pop up somewhere unexpectedly in the future . (Mine are bone mets , but I did have a left side axillary clearance ,as 16 out of 18 lymph nodes were found to be positive after my mastectomy . )

That’s why , as Barbs said above , that we’ll always be on some treatment ( unless a ‘cure ‘ does come in future !) 🤞🍀

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How long did it take to get NED? Did you have extensive mets? Sorry I have two small children I’m getting a bit desperate!

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My scan after 9 months showed no evidence of active disease . My bone mets were mainly to two areas of the pelvis but I did not have extensive mets . I have stuck with the main drugs from my onc and try and lead a healthy lifestyle ... I haven’t taken any supplements ,so far, but I am vegetarian (35 years!) but eat some dairy . I allow myself treats ( nice ice cream / a slice of cake ) when I’m out , and I walk and do gentle exercise and reduce stress. But I haven’t done anything out of the ordinary ! I wish you luck with your treatment x

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Im NED, I've been ned almost over a year. I do still do xgeve and falsodex. I have bone mets only hip, rib, spine. Im still very active, I work full time, I just received a preposition at my job. I was wondering if I could do it, but Im not going to let this stop me from living. I was very scared to stop ibrance, but my doc informed me we could come back to it if the cancer shows it's face again

I still do 3 month scans,I hv one this month and I hope and pray im still NED!

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Hi Toomany!

I just got a really good scan last TH...Not sure if it’s NED but quite possibly might be...discussed prior with my Onc about next steps and basically probably nothing changes...so even if I’m NED I still get Herceptin/Perjeta IV every 3 weeks Zometa IV every 6 weeks Zoladex shot every 12 weeks and Arimidex pill! 😱 It’s overwhelming sometimes but it’s working! 😀

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I had mets to hip and L5, 14 months ago. I have been on Ibrance and Ansastrozole continuously . Been in remission for four months and will be on Ibrance until it no longer works. I take Maitake Mushroom capsules and Laktoferrin daily ( 2 in am and 2 in pm) to keep white blood cell count up. So far is working and Have never been taken off Ibrance to allow wbc to come up. Good Luck. This is a mind game and positivity is the best medicine.

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