My doctor just took me off of Ibrance, after 4 years, because my spine and neck are showing signs of getting soft. I’ve been in a lot of pain for the past year, to the point that I am unable to walk 100 yards without stopping. I am scheduled to see and Endocrinologist and for a MRI to try and determine source of pain.
Has anyone else else experienced this? I’m still on Femara but am nervous about being off Ibrance.
Oh you poor lady! I don’t know the answer but hope you get many useful replies 🌸
boy I would be tempted to stay on it till they know for certain what is causing the pain. I know some have said their Onc kept them in it when only slight progression and things reversed. If you have had 4 years and it’s not conclusive what’s going on it might be better to stay on or to take the 7 week break some have talked about to get your system rebooted again to respond to it.
Exactly what is your onc using to determine the bones are getting soft? The pain? Test results? I’m on Ibrance also, but have no experience with this, sorry. I hope you find relief soon!
Hi Sancarlos!
This just happened to me. But ily after 2 years being on Ibrance.
I started to have a pain in my back which was shooting down my arms. So I new there is a trouble in the upper thorax spine.
I didnt wait and had it investigated. MRI, CT. My onc is a stoic.. matter of fact no emotions.. He gave me all 3 mins in his office. Didnt read me the findings, just said one vertebra got squashed and that he is taking me off Ibrance and putting me on Faslodex injections. And they are going to radiate the section of spine. Im fine about it. It will strenghten the bone and kill the cancer there. And the bone will hopefully rebuild itself over the time( to a point).
I was really hoping I will be on my first line of treatment longer. So I am having a second opinion by my COC doctor tomorrow. And also requesting the CT report so I can read it myself- since I was not given a chance ( NHS).
All the best to you
Good morning R7777,
Just wondering if your on Xgeva? Please make sure you read your report. Hope you feel better
Yes I am on Xgeva3 monthly and I am requesting the hospital to send me the findings.
Are you on Xgeva to build bone? I am on that every three months plus Ibrance and Faslodex injections. Are you doing targeted rads?
Yes Xgeva, Targeted rads? I guess yes they will target the problematic part of the spine. Last time it was I tink 8 grays and rectangule like 8X15cm
That is really strange. I don't understand why you are staying on letrozole (generic for Femara) and going off Ibrance. Letrozole often causes bone pain, as a side effect. As an aromatase inhibitor, it can advance osteoporosis.
you got a good run I think I was on it three years and yess I felt the letrozole made me weak but was walking better than I am now. I was on affinitor and aromasin and that didn’t work for me not really. Now I will start xeloda on Friday. Let’s see. Your onc will start you on something else. Take care and be strong. 🙏✝️
Get your onc to prescribe pain medication for you! We should notn have to suffer from pain on top of everything else that comes with living with this lousy cancer! Are you on a bone strengthening med like Zometa or Xgeva? Most of us with bone mets get those. About going off Ibrance, I took it for just a few rounds and it damaged my lungs. I got five years from Femara before Ibrance was available and was taking Faslodex when Femara stopped working. I got over 9 years from Faslodex. Some of us with E + mbc do really well on anti hormonal meds even without the targeted drugs like Ibrance. I hit 19 years! Now I have to be on chemo as cancer has switched to triple negative, and I sure wish I could have stayed on estrogen suppressing meds! The fact that you have gotten 4 years on Femara with Ibrance is very hopeful! One reason survival stats are so low is that people with very aggressive mbc, very advanced mets when diagnosed, and those who can't/don't follow a treatment plan die soon and bring averages down alot. I've gone to quite a few BC and MBC conferences and met alot of women with MBC and alot of women who have lived 5, 10, 15, 20 years and even one 30 year survivor.
I'm just seeing this thread and your news that your cancer switched to triple neg 
What a crap shoot this ride can be! I am sorry to hear that. Isn't there some brand new drug for triple neg? What are you taking now?
thank you for your encouraging response. Please share what conferences you’d recommend.
Blessings
agree with some of the comments, first time I hear if Ibrance causing bone softening, are you on Zometa or Xgeva. Always, Always question your doctors. You have to be satisfy with the answers before changing a treatment that is it workin. Good luck.
Yes I am on Xgeva. Heading to see an Endocrinologist to get more info ,also getting MRI. Will let you know what happens.
SanCarlos
Sorry to hear about your pain. I have been on Ibrance/Letrozole for a little over two years. So far I have not had any serious side effects. Not much pain so far. Recently they noticed that the metastasis on my spine has grown slightly and they are considering switching me to Faslodex. I shall know more in another month.
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