Ibrance scans: Hello everyone! Had my... - SHARE Metastatic ...

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Ibrance scans

Snowcone16 profile image
35 Replies

Hello everyone! Had my 90 day Ibrance follow up. Scheduled CT scan and bone scan for October. It’s almost 6 months then. When did you do scans? My last scans were February to confirm diagnosis of MBC.

My wbc were 1.1 today. The dr did not adjust meds. Said that we would watch it and that’s normal when it’s fighting cancer. I read someone else saying that too.

This was a fill in dr. My oncologist was not there. I guess I can call if I have concern but I do prefer to stay on 125 mg as long as I can. I just recall my first lab was .9 and oncologist made me test 10 days later. I was 1.7 and they said that 1.5 was the minimum threshold. I’ve stayed at 1.7 on my 3rd lab.

🤗

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Snowcone16 profile image
Snowcone16
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35 Replies
blms profile image
blms

What day of cycle you on?

Snowcone16 profile image
Snowcone16 in reply to blms

I was off. It was my 7th day off.

blms profile image
blms in reply to Snowcone16

I think 1.8 is reasonable!!!

Snowcone16 profile image
Snowcone16 in reply to blms

It was actually 1.1 for neutrophils. I’m still not worried. My liver enzymes were up but the GI said it may just be adjusting to accommodate the Ibrance. She said the tamoxifen is actually worse on the liver. She did allow me to do tamoxifen for 20 months with close observation.

blms profile image
blms

I waited 6 months for my first follow up scans. Neither my doc or I wanted to radiate earlier as clinically I was doing well.

Teddielottie profile image
Teddielottie in reply to blms

For similar reasons to yourself , I have waited 9 months for my first follow up scan ( due in September) , however sometimes I do get anxious not knowing . However I have no pains and my monthly blood tests on 125 mg Ibrance have been good so far (8th month just commenced ) . Fingers crossed x

Snowcone16 profile image
Snowcone16 in reply to Teddielottie

I mostly have no pains. I’ve had a tender spot on my ribs. It’s the same side as my surgery and radiation. Not sure if it’s worst case or just residual from 2 years ago. But it could also be from coughing when I had a cold. In my gut, I think whatever it is will go away.

blms profile image
blms

Patients do just as well in all dosages so don’t worry about that. The lower dosages still beat up your bone marrow and kill a lot of cells cancer and otherwise!! Hey have you read Suzanne summers book called knockout? I am really enjoying it although it was written in 2009

Snowcone16 profile image
Snowcone16

I’ve heard great reviews of that book. Right now I’m reading “outsmart your cancer” which is a collection of success stories and approaches. It’s 470 pages! Not sure I’ll read until the end. I could jump chapters because it’s organized pretty well. I’m in about 100 pages.

I’m ok with the 6 month because I know this med isn’t instant. I’m envisioning a great 6 month scan. Would love to hear NED.

Teddielottie profile image
Teddielottie in reply to Snowcone16

Same albeit 9 month scan ! 🤞

blms profile image
blms

How long have you been on Ibrance and how long did it take to get counts up to 1.8? Do you attribute to any other lifestyle change?

Hihif profile image
Hihif

Praying that your white blood cell counts go up. We need you you. Stay strong!😊

blms profile image
blms

Visualize your healing. Also if you don’t do tapping, try it!! Brad Yates you tube. Deep breathing difficult but effective. Going to bed now

Snowcone16 profile image
Snowcone16 in reply to blms

I’ll have to look into tapping. It’s been awhile since I’ve done my night time meditation with healing hypnosis on you tube. Maybe tonight. ❤️

Tam-56 profile image
Tam-56

They did a Cat and Pet scan in March. I started ibrance and Letrozole in June. Dr says a scan after 4 months on meds.... October sometime. I wonder why your neuts jumped from .9 to 1.7? Did you do anything different?

Snowcone16 profile image
Snowcone16 in reply to Tam-56

It’s pretty strange that they dropped during my break week. I didn’t do anything special to get them back up.

blms profile image
blms in reply to Snowcone16

i have found that my neutrophils continue to drop up to day 26. After day 21 and being on meds for three weeks, bone marrow takes a huge hit and takes time to bounce back up. I have waited longer than one week on numerous months as my counts have not been where they should. I don't think that is unusal as the lowest day is supposed to be day 22. And yes many of us have been most tired in the week off==just he big hit of three weeks of though meds. Then the marrow rebounds but pretty slowly.

JBirdnut profile image
JBirdnut

Had a PET SCAN after 3 months on Ibrance. First month on 125 mg and last 2 on 100mg. Results showed a great improvement. Now, I am at 6 months and waiting for the scan to be scheduled. A bit worried because the pain in my lower back, which had gone to zero, has returned. My onc had dropped me to 75mg 2 months ago. Can't help but think that 75mg isn't doing the job.

Janine in SE Louisiana

First started taking Ibrance in Nov 2017 with scans in December (too soon to see any change). Scans again at the end of June. Was expecting to see the tumors had shrunk but they remain unchanged - which is still good - not any better but not any worse. I am taking 125 mg with minimal side effects. Trying to stay on this dose as long as I can. WBC goes up and down based on the cycle but the doctor is not concerned- I think the first couple of months they are trying to get your baseline. Keep up the good fight.

Snowcone16 profile image
Snowcone16 in reply to PickedTheWrongChick

Yes, I hope for NED but I know and my husband knows that no progression or shrinking is also positive. ❤️

Tap321 profile image
Tap321

What was your absolute neutrophil count? Or anc? That should be above 5.

blms profile image
blms in reply to Tap321

5.0????

Snowcone16 profile image
Snowcone16 in reply to blms

I am waiting to receive the full report on my patient portal. I recall my dr saying they were interested in watching the neutrophils percentage. I’ll keep you posted. ❤️

blms profile image
blms in reply to Snowcone16

Let me know.

Wildcat1 profile image
Wildcat1

I’ve been on ibrance since January 2017. Never knew what my count were or are. I figured they’d tell me if they were too low. I don’t have much exhaustion or fatigue. My onc did lower it to 100mg just recently because of my mouth sores.

I get a CT ever 3 months and then a bone scan every 6 months. No progression. Some areas have resolved some have shrunk and some are stubborn and remain the same.

Stable is a good place to be!!

Snowcone16 profile image
Snowcone16 in reply to Wildcat1

I’ll take stable too! I haven’t had mouth sores although one of my teeth bleeds frequently. It’s one that I’ve had a root canal 30 years ago.

Esl2008 profile image
Esl2008

I get scans every 3 mos. This doc might help for understanding when docs drop the dosage: pfizerpro.com/sites/default...

I went from 125 to 100 so far. I was worried I'd have to drop again, but they just made me take a 2-week break this time, and I am back to normal. Resuming tonight (6th cycle). I wish there was something we could do to keep WBC up, but all she said that works is patience. :( I wish we could do neulasta shots like I did with chemo years ago. Oh well.

Snowcone16 profile image
Snowcone16 in reply to Esl2008

I’ve heard mixed about neulasta. Doesn’t that have some risks too? As soon as I’m settled with my move, I’ll seek out Vitamin C IV therapy. I’ve done that 4 or 5 times since my dx on January 30. 🤗

Esl2008 profile image
Esl2008 in reply to Snowcone16

I had three neulasta shots in conjunction with taxotere/cytoxan chemo for stage 1 bc in 2014. I didn't have any issues with it. I didn't get sick, so that's what mattered!!

blms profile image
blms

My cousin has had the vit c therapy. I would also like to look into this. Let me know where you find a place in Philly. I'll check here. I could easily go up to get this done. How about the coffee enemas. Any thoughts?

Snowcone16 profile image
Snowcone16 in reply to blms

I looked into the coffee enemas. I think with my liver issue, it could be a good cleanse. But I don’t have the discipline or desire to perform this myself. Honestly, I wish there was a dr or nurse that could do it in office. Then I might explore it.

The place in PHL that I’m looking at for August or September is either enhanceIV.com or restoreIV.com

I need to review if there is a dr on staff. In AZ, there was 2-3 drs in practice and nurses that administered the IV.

13plus profile image
13plus in reply to Snowcone16

I know of another woman that dies her own coffee enemas and swears by it. Personally I'm too scared to try doing it myself . But I have thought about it often

Snowcone16 profile image
Snowcone16

Ok...it was neutrophils absolute that was 1.1 this time. They’ve been as low as .9 on one occasion.

blms profile image
blms

Yeah over 1000 they still have you take Ibrance usually. I think we have to just kind of go with the flow until at least you have your first game is at six months or three months depending on when your doctors doing yours

blms profile image
blms

Now that I’m back from Florida, I’m gonna look up places in DC for the vitamin C infusions. I’ll also talk to my cousin today tomorrow Monday and ask her as she’s had all of these things done in Florida. I do know there are some excellent liver cleanses on the market that you can take in a pill form. I have one at home I haven’t done it for a while as my liver counts are always really low but I think it’s a great thing to do

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