Bone mets

[kduck]

Have anyone had bone mets only, pet scan shows activity in axillary lymph nodes? I have only bone mets, doing well with pain until last scan. Please share if you can

[Home18]

I have had bone Mets only since January of 2016, I’ve been on ibrance and letrozole since then. I have an xgeva shot every 3 months. Ive had clear petscans since 2017 that show the Mets have healed.

Hope you are doing well!!

[kduck in reply to Home18]

Sounds like your doing wonderful, I hope it continues. God bless

[Zebra2018]

Same here! I have met to my neck(c4). I had horrible pain last winter however the fracture healed and it is stable now! I am on IBRANCE 125, Faslodex and xgeva shut every 28 days. Started treatments last December! Good luck to all of us on this journey!

Sima

[kduck in reply to Zebra2018]

Good luck to you as well! God bless

[Maludagui in reply to Zebra2018]

Sorry for my interest in the subject. I have the same treatment. Your insurance covers the entire Faslodex and Xgeva ??? My insurance does NOT cover them. Do you use coupon ??? How you do ? Sorry for wanting to know Thank you

[Zebra2018 in reply to Maludagui]

I have Medicare and Aetna as supplemental. Faslodex and xgeva is covered by Medicare however IBRANCE is partially covered. First 21 days 2800 and the rest of the year 660 and some change for each 28 days. It is around 11,000 each year! It is ridiculously too much for some one on Medicare.

[Maludagui in reply to Zebra2018]

Thank you for response 🌺

[Ibelong in reply to Maludagui]

Have you looked at this site for financial assistance xgeva.com/financial-resources/

The assistance is offered from Amgen. They might be able to help if you have commercial, government or no insurance.

[LJ1004 in reply to Zebra2018]

I have been on Ibrance, anastrazole, and zometa infusion every 3 months. I have Medicare and United Healthcare as supplement. I have never paid one penny since diagnosed in may 2018. My provider has always found financial assistance for the remainder. I don't know how they expect anyone to be able to pay for this. Bless you all, this is quite a journey we are on that we didn't ask for. Stay strong!

[kduck in reply to LJ1004]

Amen

[PJBinMI]

Yes! I was diagnosed with mbc right from the get go, with "extensive" bone mets only in March, 2004, and have done exceedingly well, but like you, there has been some activity in lymph nodes. I had one removed, I think! My short term memory isn't what it used to be and I am tired but doing well. I do have more metty spots in my bones than when I was first diagnosed but have not had pain. I got almost five years from letrozole, over 9 years from faslodex and now have been on exemestane for a tad over 1 1/2 years. I've been on bone meds, first Zometa, now Xgeva, for about 11 or 12 of the years with mets but had to take a break as my bones were getting like bones with osteoporosis.

[kduck in reply to PJBinMI]

Thank you responding, once you had the lymph node removed was it cancerous? Im having a biopsy Wednesday to see if it's cancerous. On the pet scan my bones are healing well. Im on falsodex and xgeve and doing well with pain. I've been doing well until activity in lymph node. I enjoy reading about how 15 yr journey, it gives us hope! God bless

[blms in reply to kduck]

I don’t get the removing one lymph node idea! Your lymphatic system is very close to your skin and runs in various directions , it’s a like a river flow. So they take out one lymph node it is cancerous OK so then you know you have cancer in your lymph nodes. Someone gets another lymph node taken out it’s not cancerous. That does not mean you don’t have cancer in your lymph nodes! Bottom line is, if you have metastatic disease you have to have cancer in your lives nodes in order for a dude with gone from one location to the other. So I don’t think getting upset about cancer in your lymph nodes is really all that important. You have to dress your general health, your medications, or not, your diet trying to keep The lymph system is flowing properly, etc. I’ve been living with knowing that cancer is in my lymph nodes for 22 years. That thought is not disturbing for me it just keeps me aware of the health things I can do to try to keep that as positive as possible

[kduck in reply to blms]

Thank you

[LJ1004 in reply to PJBinMI]

Thank you. I am 15 months along my journey, and it gives me so much hope when l hear you have 15 years. Congratulations. Hang in there.

[PJBinMI]

Yes it was, but we've not made treatment decisions based on that. I've done well on each med for so long that we assume the cancer is not an aggressive one and that we can afford to wait. I don't remember how I felt about this at first, but now I would rather wait a tad too long than rush to change treatment--get as much time as possible from each. My onc, who retired last Dec., was older, expereinced and did not easily worry excessively.

[kduck in reply to PJBinMI]

Thank you, that is what I want to do if it's cancerous wait and stay on same treatments. I feel almost normal with my treatments im on now. Im able to go to work and provide for my family. My doc tells me not to worry because he does not think it's anything to worry about. Thanks again for your response.

[Kimr2081]

I had bone Mets only the first time the cancer spread. I was on faslodex for 11 years with NED before it popped up again in 2017. I did have radiation also. Hope you continue to do well

Kim

[kduck in reply to Kimr2081]

Thanks and I hope you get back to NED again

[kduck in reply to Kimr2081]

Kim you stated you got 11 yrs on falsodex, does that mean no type of chemo?

[Kimr2081 in reply to kduck]

Nope. I had radiation and then the faslodex only.

[kduck in reply to Kimr2081]

That's amazing 11 yrs! That's why im so worried because I was doing falsodex and xgeve and doing well. I thank you for your response. God bless you

[Kimr2081 in reply to kduck]

Prayers that the biopsy will be negative. Faslodex was so easy for me. I had no side effects at all so I get why you would want to stay on it. I am just starting xgeva. How long have been on it and any side effects.

God Bless you too 🤗

[kduck in reply to Kimr2081]

Yes I have done well on these treatments. I almost felt normal! I have been on these treatments for almost 2 yrs. Only side effects was achy bones, but I would apply heating pad and I walked right after. I hope you do well on xgeve!

[Kimr2081 in reply to kduck]

Thanks me too. My Mets this time is in the liver and we just found out that it’s in my back too. Ugh. One day at a time. Keeping my faith and trusting that God is looking out for me, 😊

[Kimr2081]

Oh me too!! Have a good day.