Fearing Ibrance may be causing Pnuemonitis.

[Cheepergirl]

I've been on Ibrance 125mg with Letrozole 2.5 mg for almost 3 years. About 3 months ago I started developing plura effusion(fluid build up) in both lungs requiring thorocentisis ( draining of the fluid) in both lungs; usually almost 2 liters in each lung. I have recently been made aware that Ibrance and Letrozole can cause severe lung inflammation including fluid build up. Apparently the damage can often be permanent. I'm wondering if anyone else experienced this? Thank you for even reading this.

[Susan1953]

I have also been on Ibrance and letrozole 3 years next month. I have not had pleural effusion but it sounds awful. The side effects of our drugs can cause some uncomfortable conditions. My thoughts and prayers are with you.

[Cheepergirl in reply to Susan1953]

Want you to know that I am praying for complete and total restoration for us all.

[Gramat in reply to Cheepergirl]

Amen to that.

[Hidden]

I had pleural effusion before starting Ibrance, but yes, respiratory illnesses are a rare occurrence due to Ibrance.

Since being on Ibrance and Letrozole, and having lung Mets, I seem to be doing ok. I'm on 75mg Ibrance. Have you asked your onc about inflammation due to the Mets? Curious as to the reply.

Anja❤️

[Cheepergirl in reply to Hidden]

Anja, my oncologist took a DNA sample because the CA markers are pretty consistent usually between 50 and 69. He is thinking that the CA in my lungs is either a renegade to that which is in my bone and lymph nodes or different altogether. He is aware of the fluid buildup as he referred me to a Pulmonologist who orders the thoracentesis. I've had 6 on 6 weeks. I see my onc this Thursday and will show him the article I read about it. Thank you for the concern and love. It helps. ✨♥️

[Cheepergirl in reply to Hidden]

Spiffy, I want you to know I replied before I told you that I am praying for complete and total restoration for us all.

[Hidden in reply to Cheepergirl]

🙏❤️❤️

[Hidden]

I haven’t experienced this but I know it is a possible side affect. Will they stop these drugs and try something different?

[Cheepergirl in reply to Hidden]

Sarcie, I hope he will change the meds. I'm condidering changing to a holistic approach. It's a lot of work and expensive and I don't know if I have the ware with all or financial resources. Thank you for the reply. Praying for total and complete restoration for all of us. ✨

[Hidden in reply to Cheepergirl]

I’m sure there are other things that you could take that won’t do this to you. A blend of modern medicine and holistic could work. Good luck.

[Lilykristymichael in reply to Hidden]

What would be some of the

Holistic treatments? And where does one find a doctor who would prescribe?

[Phillipians4and6]

Hi, I had a small pleural effusion as a result of Mets to the pleura in the left lung. That’s how we found out that the cancer had come back. I had a procedure called a pleurodesis in November. They drained the fluid and adhered the lung to the chest to prevent the fluid from coming back. Not sure if that’s something you can do but it’s worth asking about. It’s was a inpatient surgery. I was in the hospital for 3 days. Healed all good and started on Ibrance in December. Praying for total healing for you. I hope you feel better.

[Cheepergirl in reply to Phillipians4and6]

Thank you for sharing your experience with the surgery. I have been told of the pleurodisis and the ports. Since the relief with each of the 6 thoracentesis has been minimal I think it suggests the inflammation remains and I may well be one of those rare cases that are negatively effected by the Ibrance/Letrozole. I will continue to pray about it. Thank you for reminding me to rejoice in the Lord always. I'm praying for you without ceasing for total restoration, a peace that surpasses all understanding and the grace of the Holy Spirit to move through His will. Love you sista. Be well and stay strong in the Lord. The joy of the Lord is our strength.

[Andersl]

After only 3 months on doxetaxol i developed signs of lung toxicity - pnemonitis. I stopped doxetaxol late october and went onto letrazole, pertrusamab and tratusumab. I had pneunonia in january this year. Ive recovered now but its confirmation that these drugs we take can be powerful but toxic.

[Cheepergirl in reply to Andersl]

Andersl, have your lungs healed from the Pnuemonitis? We all need to keep our immune systems strong in addition to taking the meds. Good supplements help a lot. I have been loosing a lot of weight from the meds and depression. It's a full time job trying to put weight on when you live alone, don't have an appetite or private chef 😉. Stay well. Grateful to have each other. ♥️

[Andersl in reply to Cheepergirl]

I don't know if the pneumonitis is still there or not. They mentioned 'recovering from pneumonia' on the last PET scan. My lungs feel ok at the moment and I've stopped coughing though as I have quite a few mets in both sides I can get out of breath if I move about too quickly or walk uphill.

Re supplements. I take Turkey tail mushroom supplement and I'm also on Fenbendazole (Dog wormer). I started having smoothies every day with coconut milk, banana, broccoli and beetroot but its easy to get out of the habit. Other than that I eat one or two oranges a day to boost Vitamin c.

[Cheepergirl in reply to Andersl]

I only get minimal relief from each thoracentesis. One had 6. They take 1.5 liters from each lung. The reason I believe I have pneumonitis is because my lungs always feel heavy and compromised . I'm seeing my oncologist this Thursday and will tell him I want to be on different medications. I'm hoping that will be the solution. Having had pnuemonia in the past in 2003, I remember it took a long time to recover from. Be patient. I'm believing that you have no permanent damage from the Pnuemonitis. I was given an inhaler for pnuemonia induced asthma. It helped. Stay well. Thank you for your help.

[Lilykristymichael in reply to Cheepergirl]

My oncologist tells me supplements have not proven to beneficial. I am so confused about this bit is hard to know what to do and what supplements to take.

[Cheepergirl in reply to Lilykristymichael]

Check out this site. I use it for my supplements. It's costly, however when I take them faithfully the CA markers have gown down from 69 to 59 and 49. It's important to find a company that is honest and doesn't use filler. If your interested go to:

doTerra.com/US.

Go to the four bars on top left of screen. Shop then, supplements to daily vitality. There you will find many supplements and minerals. I use Micro Plex VM ( there are 2 ) I don't use the vegan one. It's more expensive Micro X EO Mega. Alpha CRX, PB Assist and Terrazyme. Register and you'll build loyalty rewards which you can use for discounts. You should read about "Our Story. Be well.♥️

[Totheriver]

Sorry to hear this. I did not know that could be a side effect. Will have to keep an eye out for this as I have heart damage from the first time around. Praying for all of us for healing💕

Theresa

[StE72]

Thinking of you in prayer. I too am on the same combination. Been getting some jelly like mucus. Now worried we are seriously at risk with the corona virus spreading.

Keep strong.

[Cheepergirl in reply to StE72]

StE72, the mucus your coughing up is more likely from a side effect of the meds. I to started coughing up a strange mucus in November and was treated for Bronchitis. Come to now believe it is more likely a rare side effect of the Ibrance/Letrozole. It amazes me that we the suffers of this monster are more informed than our providers. I love my oncologist but he is only human. Keeping each other aware of our experiences will be the destroyer of this monster. So grateful to have found you all ❤️. Praying !

[Lilykristymichael in reply to Cheepergirl]

So true!!

[StE72]

Thank you for the info. Yes this site gives us all support and a mine of information.

Really great to know and feel we are supporting and praying for each other xx

[George5545]

So my moms breast cancer actually metastasized to the pleural lining of her chest. The shortness of breath from the pleural effusion was her first symptom and was what sent us down the diagnostic path of figuring out the breast cancer was back.

She had a Pleurodesis in December and she’s been on Ibrance/Letrozole for about three months. So far no additional filling of the pleural space.

Certainly everyone’s experience can be different but It doesn’t seem like the meds are further exasperating and existing pleural issue.

Hope you get some good news!!

Deanna

[Cheepergirl in reply to George5545]

Thank you Deanna. Keeping mom in prayer for continued health and that wisdom be imparted to the doctors and every caregiver who treats her.