New Treatment Plan

[RobinR]

Hello Everyone!

I wanted to give an update as I had posted a couple of weeks ago that I was getting my bone and CT scan results. Well, not what I expected. I was on 125 Mg of Ibrance and was taking Arimidex daily and getting an IV of Zometa every 4 weeks. The tumor in my breast and one in the armpit are growing and the bone mets are also worse since my last scans. She took me off all of the above medications and I am starting Faslodex tomorrow and already started Xgeva, and those will be the only treatment for now. Just wondered if anyone has been taking just the xgeva and faslodex shots and how you are doing? I had hip replacement in my right hip in 2016 and my left hip showed signs of growth which the radiology report stated might lead to a pathologic fracture in the left hip, so my oncologist set up an appointment with the surgeon who did the right hip, and thank you Lord, he said it is not to the point where I will need surgery, and I go back in 6 weeks for him to monitor for any further changes. I have mets to the hips, ribs and spine and the spine showed signs of more growth and some new ribs are showing signs of the mets too. Also seeing nodules and thickening in the right lung, which is fairly new as well. I am feeling positive that the xgeva and faslodex will work, but just curious about any of you who might be on this same regimen and how you are doing. I am grateful for this group as I have learned a lot in the time I have been a member. Love and prayers! Robin

[Barb5]

I have heard good things about the faslodex I’m sure you will do great. I have been on Zometa for 4 years.

[RobinR in reply to Barb5]

Thank you Barb. My oncologist took me off Comets because my creatinine levels continued to go up and she was concerned about my kidneys. I don't have meta to the kidneys and evidently Zometa does cause issues with some people. I am so glad it is working for you! I now have an injection of xgeva and pray it works! I had my first injections of Faslodex yesterday and have a sore behind and some swelling around the injection sites, but I guess that is part of the side effects. Also had some nausea but it is better! I wish you the best!

[Barb5 in reply to RobinR]

Thanks you too!

[Hidden]

I just started am also hoping it work. and I have been on xgeva for 18 mo. I will have tumor markers done in April to see if markers are going down. Will let you know.

[RobinR in reply to Hidden]

Yes, please let me know how you are doing! I forgot all about asking what my markers were so will inquire when I go back.

[diamags]

I've been on Xgeva, Faslodex and anestrazol since my stage IV diagnosis 4.5 years ago. Yes, there I have joint pain, but with a daily walk, it's very tolerable. I have been stable on it. I wish for you the sane experience.

[RobinR in reply to diamags]

Thank you so much. I am so glad you are doing well in your treatment plan. I am praying that my new plan does what it is supposed to and I soon show signs of improvement!

[Hidden]

I was put on Faslodex and nothing with it in January after Xeloda failed (after 11 months) and Navelbine did not help (after 3 months). I have had only liver mets since dx stage 4 - a small one which has now grown after some years of staying very small. My first bloods after starting Faslodex showed a marked decrease in the CEA but a small rise in CA125 and quite a high (76) CA15.9 which was a bit depressing. However my oncologist pointed out that we had not run the 15.9 for over 6 months so not sure if it had gone up way above that while Xeloda and Navelbie were not working. I do have some pain in ankles (both were badly sprained at various points over time in my youth so rather arthritic). Also in my jaw - question arises whether I grind my teeth or tent to clench them. My worst side effect is heavy sweating often after eating and especially when I work in the garden or house. It is really annoying to have sweat literally dripping from my hairline into my eyes and down my neck! Am seeing the oncologist again on Monday so will see if she has any ideas. Meantime hoping that my blood markers are down. Otherwise I have no idea what can be done as my medical scheme - I use the word advisedly instead of "aid"! - has listed Ibrance as a restricted formulary drug - i.e. heavy motivation is required and even then they will probably say I need to be on the very expensive plan or some such nonsense. Holding thumbs that bloods are OK and scnas due in a month or so will show some stability.

Good luck with faslodex. If it works for you it is really quite tolerable.

[RobinR in reply to Hidden]

You are in my prayers! I had my first Faslodex injections yesterday and my behind us sore and the left side is swollen and also had some nausea, which isn't unusual for me. They told me the main side effect is got flashes, which I had on the arimidex, but they haven't started yet from the Faslodex. Please keep me posted on how you are doing!

[SeattleMom]

Hello, Robin!

Have you had any radiation to spine and bone mets?

Also, if you are hormone receptive, the letrazole/Ibrance combo seems to be typical for post-menopausal, hormone receptive patients. You may want to ask onc about this. So sorry about your disappointing news; you are in my prayers, dear one. XO Linda

[RobinR in reply to SeattleMom]

Thank you Linda! I had radiation on my right hip but that is the only area so far. My oncologist says I may need some on my spine down the road. I think the arimidex I was on is similar to letrozole and it worked great at first on its own, but looking back I don't believe the Ibrance really made a difference. I have two tumors and thought the one in the right breast was decreasing slightly when I first started the Ibrance, but never really noticed a difference in the one in my right armpit. I'm praying the xgeva and Faslodex do an even better job than my previous meds now! I appreciate your encouragement!

[RLN-overcomer]

Sister/Over-comer/ Warrior : I pray you will have the right combination of drugs to give this disease it's walking papers, it's eviction notice, and a you are fired pink slip. I love your fighting spirit, and I/We your sisters stand in the gap with you. The same Dr/ God who healed the sick in biblical times , is the same God today who abounds with grace and mercy. XoXoXoXo