New treatment I am Stage4breast canc... - SHARE Metastatic ...

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New treatment I am Stage4breast cancer ER(+)PR(+) HER(+)

PLASEM
PLASEM

I have stage breast cancer to the bones in July 2017 and I have been with Ibrance and Faslodex till now, my cancer markers are going up and MRI on December 2018 of my pelvis and Lumbar site came inconclusive the radiologist said that definitely He can not say that there is not metastasis on my pelvis because it may be reconversion of the bone marrow due that previous bone scan and PET-CT on August 2018 were negative but I have a lot of pain on my pelvis and now my oncologist is suggesting that I could start chemotherapy I told him that I could try another Chemo pill till my next scan, I know that Ibrance, Kisqali and Versenio are from the same Family what about Afinitor what are your suggestions I am concerned because if I start chemotherapy I do not think that I can work and I was hopping to work at least one more year before I retire or apply for disability I can not work because I work in a hospital and My shift is 12 hours and there is no light duty job

24 Replies
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Plasem, I originally was stage 3 in 2013. Stage 4 in June 2017, although I was stage 4 8 months prior to that. Markers do not work for me. It's in my ribs, spine, shoulders and front of hip bones. Started on ibrance and faslodex. After 6 months it had spread more. Am now on Afnitor and Aromasin for 1 year. Doing well with it. Some side effects but not the really bad ones. No nasea. The thing the Oncologist nurse told me was to drink as much water as possible. I drink about 60 oz a day. My hair has come back in very thick. I was losing it in handfuls on ibrance. The funny thing is all the hair on the back of my head has become so curly it's impossible to do anything with it. The top and front sides are still straight. That's an easy side effect. I would suggest using the swizzle mouthwash 4 times a day even if you have no mouth sores. I think it helps keep them at bay and if I do get one there not as bad. Hope this helps.

PLASEM
PLASEM
in reply to Selmac

Thank you that is really good that affinitor is working for you God bless you

I was on ibrance and faslodex in 2017 and it worked for about 11 months. Then i tried xeloda and it didn't work at all, so i was put on Abraxane and letrozole and it is working so far. The side effects are not to bad either, just drink lots of water and get your 8 hours of sleep a night. Oh and i lost my hair, but it started growing back but very thin not enough to cover everything and it's falling out again. Best of luck to you with your new treatment!

PLASEM
PLASEM
in reply to My3girls

Thank you Is Xeloda chemotherapy, take care and God bless you

My3girls
My3girls
in reply to PLASEM

Yes it's oral chemo

PLASEM
PLASEM
in reply to My3girls

Thanks God bless you

PLASEM
PLASEM
in reply to My3girls

I forgot I take Biotin for my hair is thinning but still growing thanks

Are u Her+? I am and I get Perjetta and Herceptin...u could definitely work with them. I do. Usually go back to work after treatment...a little tired here and there but I work full time and work Out 🏋️‍♀️ a lot...check into it...😀💕I didn’t know u could do Ibrance with Her2+

PLASEM
PLASEM
in reply to Rhwright12

Thank you

PLASEM
PLASEM
in reply to Rhwright12

I am not not sure about my HER

PLASEM
PLASEM
in reply to PLASEM

I am HER2 negative

The hormonal therapies did not work for me so I am on an oral chemo drug called Xeloda and am working full time. The only side effects that I am feeling from this are on my hands and feet. It causes symptoms much like hand, foot and mouth disease which is common in young kids. The symptoms are annoying but manageable. Maybe that is an option for you.

Good luck and hugs coming your way.

Thank you

Hello Plasem! Whenever I feel overwhelmed, I’m going to remember your post. Can’t believe all that you are handling while undergoing the side effects, especially exhaustion! I pray that your tests show no progression and that your pelvic pain subsides. God bless you! 🙏🏻❤️

PLASEM
PLASEM
in reply to SeattleMom

Thank you God bless you

If your onc isn't a bc specialist who sees only patients with bc, you might want to see a really specialized onc, at least for a second opinion. If you are in the US, the best places to go are the Comprehensive Cancer Centers. They are listed on the website of the National Cancer Institute and have oncs who see bc patients and do research and keep very up to date on the latest thinking about treating this lousy cancer. I got an appt to see a bc onc at a CCC about ten days after my onc called there to refer me for a second opinion. I will go back anytime I need to make really big decisions. I've been living with bone mets for almost fifteen years and several times radiologists have reported things on scans that my onc doesn't see at all when she looks at the films. I think some radiologists are so worried about missing something important that they over report and see things that aren't there.

Godbeforme
Godbeforme
in reply to PJBinMI

hello and thanks for all the good information. I was wondering, what treatment did you take for your bone mets? i had a partial lumpectomy in 2013 and now it's back as bone mets ER pos HER neg. I am taking letrozole only right now, along with a slew of vitamins and minerals. The Letrozole side effects I find horrendous, so I am doing alternative dosing, only taking on Monday, Wednesday and Friday as I have read in many different studies how it has a 2 day half life. I don't know what difference it will make in my symptoms as I've just started this week. I really do want to take it if at all possible because I know it is one of the best first-line treatments. Sad thing is, can't tell the onc because he will pull me off of it. I've only seen him once, I have no motivation to even get a 2nd opinion. I have read that people can live for years with bone mets, so I am seriously considering taking NOTHING and tossing the dice. I don't want to be sick the rest of the time, however long, I have to live. I'm sixty-five btw. God bless and heal us all in Jesus name, amen!

PJBinMI
PJBinMI
in reply to Godbeforme

Let your doctor know about the side effects. Some find the side effects worse the first two or three months and then much less later. I don't remember how true that is with Letrozole. There are also two other drugs that are AIs, like Letrozole, that you might find easier to tolerate. I was diagnosed a long time ago and besides Letrozole, started off with Zometa for the bone mets. It knocked me out the first couple of treatments--I needed naps the day of and day after the infusions but that got better. I was/am allergic to it and ended up needing pre meds, extra fluids and extra infusion time. When the FDA approved Xgeva, I switched to it with no problems. Please don't make assumptions about what your onc will do if you let them know about the extent of the side effects. Often there are things that can be done to ease them. I've been on hormonal treatment for the 15 years I've had mbc and I have had rough hot flashes but have taken Effexor for those and it has made all the difference in the world. I used to have several times a day, even several times an hour, hot flashes that would make sweat roll down my face, which was bright red. VEry noticeable and very uncomfortable. NOw I have an occasional, maybe once in six weeks, warm surge.

Godbeforme
Godbeforme
in reply to PJBinMI

that is very comforting to hear! I will keep all of this in mind when I talk to him; I've seen him once and don't even know his onc specialty, so I will have to know a bit more about him before I trust him over my own gut. God bless and heal us all in Jesus name, amen!

It is really true, They are humans and made mistakes, I will have an appointment with my oncologist and get a CT and I will make a decision depending on the results to ask for a second opinion, thank you

I hope you can avoid traditional chemo. I have refused it twice and am so glad we tried other options instead. Cancer markers can go up for many reasons and should not be the sole reason for starting chemo. There are many other options out there thanks to our researchers!!

Thanks and what treatment did you do when you refused chemotherapy

Letrozol 2 years ago and now Ibrance and Faslodex

Thanks I am on the same treatment

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