New Stage IV Dx & Tx with Femara & Ibrance! Help—very scared!

Bailey, I am sorry for your diagnosis. My mets are not to the same areas as yours, mine are to bones and liver, but I do understand how you feel. Hearing the words of the stage IV diagnosis is shocking and frightening. I thought my life would be over quickly, but I soon learned that many people with MBC live with the disease for many years. Now, more than 2 years after my diagnosis, I continue to lead a fairly normal life. The combo of Ibrance and Femara is a very effective treatment for many people. If you haven't already found the Ibrance thread, here is the link.

https://community.breastcancer.org/forum/8/topics/828848

There is a lot of good information there, and many supportive women and men provide helpful information and share their experiences there. My children are older than yours, but I found it difficult to tell them that I was stage four. As soon as I had a treatment plan in place, I sat each of them down and told them and answered their questions while trying to remain positive but truthful. They were strong, but I could see the fear in their eyes. I told them that i would continue to be honest and open with them and would always keep them informed.

I think that by default, when someone starts a new thread, that person receives an email when someone else posts to the thread. If that is the case, you already know that now!

Others with more information and advice will post soon. In the meantime, welcome to the world of MBC, and I am sorry you have reason to join us. Things will be better, really.

Hugs and prayers from, Lynne

P.S. I hope you still take that trip you were planning!

Hi Bailey, I know about your plans to go to Hawaii from your Private Message. I have more ideas of things for you to do. If I have a chance this weekend, I will send them to you

Hi Bailey, like you my first diagnosed mets were my lung mets due to a pleural effusion.  The good thing was that then they knew the really problem and could fix my shortness of breath.  

I actually was on Femara alone for the first 18 months and for the last 7 months on Ibrance and faslodex. I am almost symptomless from my lung mets.  Don't be surprised if they find a few bone mets as well which generally happen first but may not cause any symptoms especially if they are sclerotic.  Sorry to see you join us but you'll find a lot of support. 

Bailey. I posted on Ibrance/ femara thread, too.

I do have what you have! I started TX on January 5, 2017. So, ten months into treatment. August PET showed good response, tumors had reduced uptake by a third to almost half in some. From 6.9 to 3.9 in one, I'm hopeful that my December PET will show more response, even lower uptake.

I was DX almost a year ago. At first, because I had not read about new treatments, I was devastated and thought I would probably not live a year. Then I went through the I'm so scared to start this pill and how on earth can two pills actually be strong enough to kill these big tumors ( it's in my liver, too). Then, disbelief that I could live years, not months. THEN I found hope in these boards. I hardly knew how to post, much less what a thread was. I've come a long way.

Now, I read EVERYDAY and post a lot on several threads. This new habit is my life line. It keeps me encouraged, enlightened and I'm able to encourage others, like you.

Keep posting, keep reading and keep learning

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This kind of diagnosis can be overwhelming, Bailey, and in my experience the periods of feeling at peace with it can suddenly be interrupted by another round of overwhelm, sometimes for no apparent reason. It sounds like you're handling things pretty well to me.

Catholics can indeed be cremated. The only stipulation is that the ashes be treated with respect, which typically means having them interred at a permanent site rather than kept on a mantelpiece or scattered somewhere. Many churches now have what is called a columbarium which is a wall of niches for ashes.

I can appreciate your desire to save yourself and your family the challenges and pain of the last months of life. That said, it can be a time of real blessing both for the dying and for those left behind. My father recently passed away and I was with him for much of his last weeks. It was an experience that I would not have missed for the world.

You may find it helpful to find and contact local hospice organizations to find out what end of life palliative care is available for you. To be clear, not all palliative care is related to hospice. Hospice becomes an option once you decide to no longer pursue treatment. Palliative care is available during treatment as well as after treatment has stopped.

These are challenging days, I know, but not all bad. I have found that even a little bit of mindfulness meditation is very helpful for calming anxiety and maintaining normal life.