Is anyone here in remission at the moment? Or NED?

[Toomanyquestions]

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.

[Barbteeth]

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

[Merma]

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

[Toomanyquestions in reply to Merma]

Do you mind if I ask where your mets were?

[Merma in reply to Toomanyquestions]

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.

[Teddielottie]

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

[Toomanyquestions in reply to Teddielottie]

Are you NED?

[Teddielottie]

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 !) 🤞🍀

[Toomanyquestions in reply to Teddielottie]

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!

[Teddielottie]

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

[kduck]

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!

[Rhwright12]

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! 😀

[LJ1004]

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.