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possible treatment change/ markers increasing

LisaT23 profile image
5 Replies

Hello again,

I posted this under my other post "worried about markers / possible treatment change " from 2 weeks ago. But am posting here as well. As I said before my Onc is leaving my healthcare system at the end of this month. I have been with him since my original Dx of BC back in 2003, and MBC in Dec 2015. I will probably try to keep him for consults at the very least, but he gave me his cell # just in-case.

I did 2 years of arimidex, and have been on faslodex since 2/2018 and ibrance since 4/2018. I had to stop xgeva after a year due to ONJ (last dose 12/2018).

Onc had me hold my ibrance/faslodex to draw markers after my week off. So now my markers have gone up again ca 27-29 is now 108.8 on 6/10 from 97 on 5/18. (71 the month before) My nurse called me Wednesday night, Onc wants me to get my faslodex shots and start the next cycle of ibrance asap, and get x-rays of my hip. This is the only spot that showed a slight increase, the sacrum and spine showed a decrease on the PET 5/4.

Thurs morning I called and got the center to squeeze me in for Friday morning, I will pick up my ibrance then.

Well, Onc called right after I booked everything. He said he was thinking about me all night. ( He is leaving at the end of the month,and a new Onc ( that he picked ) is taking me on. I had an appointment with the new Onc set for 7/5). He said to cancel my shots, not to restart the ibrance, and that he wants me to see the new Onc before he leaves so that they can discuss my care. To decide if I stay with the ibrance/faslodex even with markers increasing, or switch.

He just called me again, the x-rays are fine, just the very small lesion on the hip, no fractures. He squeezed me in for Monday 6/17 with the new Onc , he is still there for 2 more weeks, just not seeing PTs only finishing paperwork. He will try to come into my appointment, but will definitely talk with my new Onc after, to decide if I stay on ibrance/faslodex or switch to something else. He thinks they both might even present my case to the tumor board again.

waiting,

Lisa

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LisaT23
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5 Replies
nstonerocks profile image
nstonerocks

Your current doc sounds like a gem

mariootsi profile image
mariootsi

It's so hard to lose an onc after so long but it sounds like he is really caring and setting you up for a smooth transition to new onc and continuing treatment.

I wish you well with the change. I lost my old onc too, but she also had set me up well for the transition.

SoCalLady profile image
SoCalLady

Hi Lisa, sounds like he may be thinking the Ibrance/Faslodex is no longer working well enough for you although your scans haven't progressed much, those markers keep climbing, and want's to be pro-active, but wants another expert opinion. Again I so love your ong, he makes me want to cry. I'm sure your new ong. is going to do his/her very best to measure up to him. Please let us know as soon as you do after the 17th what they decided would be your best options. I'm kinda in the same situation as you, although my markers have gone up much more and my ong is pretty in-active about the whole thing.

PLASEM profile image
PLASEM

I hope you have a caring new oncologist

You had an X-ray of your hip, I had the same situation but I got CT of my pelvis with contrast on CT shows more than X-ray so you can ask your oncologist take care and God bless you

LisaT23 profile image
LisaT23 in reply toPLASEM

Hi Plasem,

I have a PET/CT (head -toe) every 4-6 months, the last one was 5/4 and the last MRI was 3/28. Since "we can't do a PET every month let's get an x-ray". So I said since I am getting an x-ray please take one of my foot as well. my cat knocked my yeti travel cup on it.

Both my hip and foot were fine, no fractures just the small lesion on my hip.I have had plain CTs with/without contrast (chin to thigh) (once a year??) but the PET does a CT scan as an outline for the PET (just less slices/ images).

I will see the new Onc tomorrow. The staff all say she, her PA, and nurse are all very nice, and my Onc says she is excellent. So here's hoping we hit it off??

Thanks,

Lisa

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