Verenzio, high vitamin B12? , hair t... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

4,647 members5,520 posts

Verenzio, high vitamin B12? , hair thinning . Bone mets healed .

Grebnesie profile image

I take Verzenio, seems I’m the only one , everyone on ibrance . My vitamin B12 says >2000 scary . I take 1000 daily , that’s all . I have ER/PR positive metastatic to bones only . My pet said no sign of recurrence or metastatic disease . I asked onc if I’m in remission, he said partial 🙄

30 Replies

Hi 🌷 Just check again but I have never been checked for vitamin B-12 only vitamin D. I have not used. verzenio but I have been taking ibrance - letrozole for three years. I'm so glad you don't have any signs of metastasis currently active. What I have read and heard in this time is that bone metastasis is non-remissioning. You just have to learn to live on this roller coaster. My experience has also been only in bones. I wish you have a nice day 🌷

Hi Grebnesie,

Wow! Congratulations! Fantastic news on the cancer front and re: the B12...minor concern in the scheme of things? :) And an easy fix, i.e. take a higher dose?

Year ago, my onc told me to take 2500 mg daily, sub-lingual (not sure if that part actually matters), I assume(d) because I'm vegan...I don't think mine has ever been checked but I'm pretty good about putting those tasty little tablets under my tongue (!), so I don't sweat that one... :)

Wishing you many years of success with the cancer!

Lynn

LynnFish profile image
LynnFish in reply to LynnFish

OMG, I just re-read your headline and your B12 is "too high"!! So I'm sorry for my off-base response, and I'm left wondering if too-high is an issue? Like, what problem does this cause?

Again, apologies...my reading comprehension is not what it used to be!

Lynn

Grebnesie profile image
Grebnesie in reply to LynnFish

No worries , yes I’m scared about that B12 I never had it checked before so I have no comparison:(

LynnFish profile image
LynnFish in reply to Grebnesie

Okay, so maybe that's normal for you? I know lack of B12 can cause issues (I'm pretty sure I was deficient for years...maybe that's why my brain doesn't work? :) ), but is "too much" an issue?

Honestly, dear Grebnesie, I'd probably choose to not fret that one... :)

Take care, and *dont* take my word on anything medical! :)

Lynn

Grebnesie profile image
Grebnesie in reply to LynnFish

I could tell I liked you from the start, I never knew their was a b12 test either or what the significance of it is until I saw how high mine is . Lol

Barb5 profile image
Barb5 in reply to LynnFish

I was taking vitamin B12 and my dr told me not to that it can interfere with cancer meds🤷‍♀️

Barb5 profile image
Barb5 in reply to Barb5

I’m also on Verzinio 🤷‍♀️

Grebnesie profile image
Grebnesie in reply to Barb5

REALLY ! Mine told me to take it and then ran this test after 1 year . Hmmm

LynnFish profile image
LynnFish in reply to Barb5

Interesting!!

This made me curious, so I did a quick search, found this study which said that high B12 in blood test is associated with increased risk of cancer...But, the way I read it, the B12 didn't cause the increase, it seemed to be almost like a by product of the cancer, i.e. *having* cancer can increase your B12 ?

cebp.aacrjournals.org/conte...

If anyone smarter than me reads it, please correct any errors in what's above... :)

Here's the takeaway:

"Conclusions: Elevated plasma B12 levels were associated with a higher 1-year cancer risk than normal B12 levels among persons seen in UK primary care, suggesting that some cancers may affect B12 metabolism.

Impact: Elevated B12 may mark occult cancer."

Grebnesie profile image
Grebnesie in reply to LynnFish

Wow that interesting and scary . I have never had one before . I can’t wait till the 17th , I will show this to my doctor who pushes my hand away when I bring information. He is a good doctor but no bed side at all . Thanks for checking and caring 🌹

ChrisVict profile image
ChrisVict in reply to LynnFish

I’m don’t pretend to be smarter but my onc at MSK told me to take a mult B and okayed biotinbut said not to overdue the B

Grebnesie profile image
Grebnesie in reply to ChrisVict

Vitamin b12 has Cyanide in it, I’m not taking it ever again , we should be able to get what we need from protein and fish , biotin is what I believe made my cancer spread . There is information on that all over . I will not take biotin or vitamin b12 ever again . Just my feelings , I’m not a doctor but I can do the same research they can . This is what I found out . Good luck 👍🏼

You are not the only one on Verzenio. I just started one month ago. Doing well. No diarrhea. And no hair loss. I wish I had stayed with Ibrance a little longer even with progression. I have mets to the left hip and both lungs. Only the lungs are showing progression. The rest is stable.My oncologist has added in Tamoxifen which causes thickening of the uterine wall for me. A biopsy showed all clear but it was stopped as a precaution. Now he thinks it will help my chances of success. I am worried because it has shown further thickening of the uterus wall. Those biopsies are painful.

My second opinion oncologist says a study has been done which shows Tamoxifen is just as effective at 5mgs. as the regular dose of 20mgs. My second opinion doctor is very smart and always there for me. I am so fortunate to have found her.

As to the vitamin problem, I don't know but I would check with your oncologist and your family doctor for answers.

Best of luck to you,

Cheers, June S.

Grebnesie profile image
Grebnesie in reply to 8576

Good luck with all you are going through with uterine walls . I remember I always had issues , then I had a complete hysterectomy beat thing I ever did , not having kids so not necessary. Never even think about my Gina it never leaks or smells or itches , perfect a sexier feeling lol .

Hi, Grebnesie!

I am currently on Verzenio after a 2 1/2 year run with Ibrance. Started with 100 mg but diarrhea was a real problem so dropped to 50 mg and that seems to be going well. I did notice hair loss similar to beginning of Ibrance but has leveled out. Comparing the two, I think Ibrance was easier to tolerate.

Grebnesie profile image
Grebnesie in reply to TNVol

I have leaky eyes but not sure what from , but between all things I’m taking , I’m on verzenio 3 years my pet scans are clear no sign of recurrence or metastatic disease . So I am hoping and sure you will get same response, great medicine does it job completely.

I’mOn Verzenio. Same as you. 6 months. Bone Mets only. Hair thinned but stopped now. Nioxin shampoo and biotin, if MO approved, helps a lot

Thank you so much 😊

Grebnesie profile image
Grebnesie in reply to Grebnesie

I won’t take biotin , I was on a lot if biotin after chemo for 2 years and my cancer spread . I believe deep down after reading breast cancer and biotin that there seems to be some kind of connection . Good luck

I had no clue. My MO approved. Can you share any research?

No I just googled biotin and breast cancer at the time of his was 4 years ago sorry

Congratulations 🥳💐🎉on your NED status! My oncologist calls it Radiological Remission. Praying it lasts a very long time ! ❤️🙏❤️

Thanks you too 🌹

What does radiological remission mean to your doctor. So not in real life just in radiological terms? What does that mean do you know? Interesting thank you in advance🌹

Radiological Remission means that my scans show No evidence of disease (NED)/cancer. He said cancer is crafty. It can outsmart the treatment & appear again we just have no idea if that’s next month or 10 years from now. That’s why MBC patients take the drugs for life. In so many words, that’s what he said.

🙏❤️🙏

OH MY GOSH!! I was going to post something similar a few days ago. My b12 same 2000 im on ibrance bone Mets only taking small amount of supplements. Idk y its scaring me so much but its just so high. Following! Thabks for posting!

Misery loves company , I’m glad I’m not the only one . So I stopped taking my 1000 mg vitamin b12 a day after reading that there is cyanide in it. And if mine is higher than 2000 that means that I have a lot of cyanide in my body. I threw them away, I’m going to speak to my doctor on the 17th is my appointment. So I’m not gonna take any until the 17th and I want to be retested. I’m gonna get to the bottom of this. And he is the one who told me to take it. It’s the first time I ever had my B12 checked so I have nothing to compare it to. I hate all this

Cyanide? Omg mine was greater than 2000 and my folate was extremely high also.. next week im going to request a retake also and I stopped immediately also. Im very concerned. Keep me posted and Thanks for sharing

Did you look at the ingredients of you vitamin b12 for yourself and read the ingredients? Yes cyanide from what I read and investigated. But look at yours don’t take my word for it . Lol good luck and plz keep me informed as to what you find out . I don’t go till the 17th to onc . Ty

You may also like...