Bone Mets Thread
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Delvzy....doctors don’t know everything, nor do they have the final say so. I was dx Nov. 09 and given 3 months to live. God had a plan for my life. I totally trust Him. I see you are a Christian as well. I know when you get “that news”, it’s mind numbing. I went through denial, depression, you name it, I went through it. Try to only think of today. Of just this hour we’re in now, not even 2 hours from now. I found that living minute to minute (I had to build up to that from living years to years) helped me a lot. Try not to worry. I also know that was a waste of breath when I was given the dx. If God wants you here, you’re going to be here no matter what anyone says or does. Have faith, and know we are all here for you. Much love and great big hugs!!!!
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Delvzy, I’m sorry about the news you’re dealing with and concerned docs gave you a timeline. Are they any clinical trials available to you? Perhaps WBR will have better than expected results. Sending you good vibes.
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Delvzy- You are in my prayers. Hold on to your faith. The Lord will hold your hand.
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I don’t post but read every day. Been on Ibrance/Letrazole/ Xgeva for 3 years and 9 months for extensive widespread bone mets. My CA 27/29 has been creeping up for about a year, from the 40s to currently 130. I’ve had 4 ct scans and an abdominal mri in this time since insurance refuses to pay for pet. All stable. Had a scan New Year’s Eve which is stable. My alkaline phosphate was 444 when diagnosed and went down to normal very quickly when I began treatments. Last bloodwork it was 132 which is out of normal range for the first time in years. My onc feels like I may be having progression in my bones that the ct is not picking up and has ordered a bone scan. Says if my treatment has to change it will be changed to Xeloda. Is this usually the next step after Ibrance? I know I have been very fortunate to have had all of this time on my first treatment. Any input appreciated
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Lynnwood
I went on to Falsodex after Ibrance, which did not work. I have been on Xeloda for almost 10 months and it has worked very well. It is frequently used after Ibrance. Best, MJH
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Lynwood, We seem to be in a similar state; when I have to switch I'll definitely be looking for a Faslodex combination. At ASCO last year it was reported that the majority of progression from F/I is due to resistance to the femara, not the Ibrance, and so because of that I would probably want to move to Faslodex-Ibrance or Faslodex-Abemaciclib. However, it would be awesome to be able to get some immunotherapy included as well, so keep an eye out for any new trials that include immunotherapy, or at least for more clarity regarding secondline options. More info should be forthcoming from the AACR and ASCO 2019 meetings in the late spring/early summer..
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Thanks girls for your love and support it means the world to me xx
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Delzvy - holding you in prayer... Good luck and take Care...
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Delvzy stay strong and positive...like they say in opera...it's not over till the fat lady sings....
I'll be praying for a sudden and unexpected positive turn of events!!
Two years ago I had to put my affairs in order...but here I am now, feeling stronger and better than ever...and so can you!
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Delvzy, I am sorry to hear your news and for the pain you and your family are feeling now. I pray that your treatment and WBR can beat this back again
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Oh Delvzy, I was so hoping for a different outcome. I'm adding my prayers to the long list of friends you have here. May your family gather around you in strength and love, and may the treatment provide pain relief and a good long run of quality time. I've come to peace with the fact that I'll lose my hair at some point. There are such cute turbans and headgear these days. Go online and have them ready to go. Sending my heart to yours, dear one.
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Delvzy, thinking about you, hoping for a miracle. My heart is breaking for you and your son.
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Delvzy - So sorry to hear your news. I will be saying prayers for you and your family.
Cindy (wallaby)
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Lynwood1960: I was on Ibrance/Letrozole for 18 months. Same thing happened to me...my tumor markers started creeping up after having been as low as 21. I moved to Afinitor/Exemestane which pretty much did nothing for me. I'm now on Xeloda and my TMs dropped from 200 to 61 within about 2 months. Wish I had moved directlly from Ibrance to the Xeloda but oh well. I'm hoping that the Xeloda works for a long time as I have read on here and elsewhere that some have had very long runs on it. My MO, who I saw yesterday, mentioned testing me for a gene mutation as there is a new drug just approved which will target that mutation in the cancer cells and zap them. She didn't tell me the name, we are holding on to that as one of our next steps if Xeloda stops working. I hope you tolerate the Xeloda and have a long run on it!
Cindy
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Thanks so much for your input Cindy
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Delvzy,
I am devastated with you. We were dx'd close to the same time.
When we are Christians, we believe there is life after this one. We believe God has a plan for each of us and it all works for good in the end. Please keep trusting that no matter what happens, God is in charge and He will carry you through this hideous disease. He will carry your family. He will carry us, your cyber BCO sisters. All of it is taken care of.
Nothing I or anyone can say will make this go away. But God knows what you are going thru and knows what you need. Trust. Know. Believe. Enjoy every possible moment. Even in the middle of this impossible time. You can.
I believe in you because I know God believes in you.
Sending much love, Gumdoctor
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so true Gumdr I do know I would be in really bad trouble with my faith. Thank you all for your prays and words of love and encouragement, I hope for a miracle and go into remission x
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God has your plan in His hands. No matter what His plan is for you, He will take care of you through it all. Conti uing prayers.
i believe in You. God believes in You.
Love, Gumdoctor
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I'm relatively new to this thread but still feel a connection to my sisters everyday. I have struggled with what to say to those of you struggling right now.
I have never been a practising Christian but I do believe that there is a plan for all of us. Gumdoctor, your words brought me to tears and I will carry them with me on my journey as well. Thank you!
Sending all of you positive healing thoughts on this path we are on.
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Sherry -
Welcome to this phenomenal group of survivors!!! Everyday, we survive the ravages of this disease. And we help each other find a way to manage, to cope, even to thrive.
I hope your tears were more tears of joy than tears of sadness or grief.
I too have very dark moments but I make every effort I can to find joy. Many moments of joy surround us. We just have to remember to look for them, seek them out. They are there. For each of us.
I find great comfort in my faith and am completely convinced my situation would be so much worse if not for hundreds of people praying for me and my dear husband. I do not want to offend anyone with posts about God and faith. This is only one perspective and there are many.
I am humbled and pleased God uses me, and others here of course, to help others in the middle of our impossible MBC reality. MBC burns down our previous life. Our faith, our family, whatever motivates us to rise above these MBC ashes to TRULY LIVE during our remaining time and to be a blessing to others however, whenever possible. I believe you can and are surely rising from these MBC ashes right now.
Sharing only love and joy with you and with All in our special group,
Gumdoctor
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Delvzy, God be with you and your family through this. Wishing you peace as you go forward and joy in each day.Maire
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Delvzy, I’m so very sorry for your news. I’ll add you to my prayer list. I hope you have a complete response from WBR.
Lynwood, I’m sorry you are having progression on Ibrance. I too hope your next option gives you a long run
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Thank you Gumdoctor! My tears were definitely more of joy. Just so comforting and reaffirming that there is a plan for each of us and your words for delvzy helped many I'm sure!
I had almost 12 years between my initial Dx and my MBC Dx and I'm still coming to terms with everything. I am so thankful for everyone who shares their experiences and insights, trials and tribulations as it helps so much!
Nothing but positive thoughts for all of us on this journey
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Delvzy- So sorry to hear your news. We’ve seen many successes from WBR within this group...have hope!
Lynwood- We have heard good reports on Xeloda on these boards.I hope it gives you super QOL! PIus, they are now saying we may be able to recycle Ibrance down the road.
Change is hard to manage with this illness. And scary. Sending hugs to you both.
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Hello to my special friends here in Bone Mets Thread --
Anyone up for a little bit of good news?
1. Met with new MO. Like her. Alot. She seemed as though she took every single thing I said seriously and will do whatever she can to help me. I can say for the first time in over 13 months and longer (6 mos leading up to stage 4 dx in Dec 2017), I feel some relief and some peace. I cannot measure the severe amount of stress I experienced due to previous MO's apathy. Praise God I do not have to deal with that apathy anymore.
2. CT with contrast (every 3 mos) does NOT show lung lesion growth. It did show growth 3 mos ago. Although different sizes listed in different reports contradict each other, it does not appear there is lung progression at this time.
3. CT with contrast does NOT show vertebral compression fx. I had recent change in back pain from muscle spasm-like to burning/twingeing and lying down no longer makes it go away. I was convinced I had a compression fracture but it does not look that way for now.
Because previous MO did not listen and did nothing to address my significant back pain, new MO ordered cervical and thoracic spine MRIs. They are scheduled for next week. I am, again, relieved to think we will at least evaluate and then decide what to do if anything. Previous MO's answer was, "your lesions are not big enough...it is neuropathy...take Naproxen" while shrugging his shoulders.
Also with an MRI on disc from the Army, and the radiologist's report stating over 50% of C5 was engulfed in mets, previous MO said, "It is not helpful to have additional imaging...we won't be following up with any MRIs." The CTs have shown nothing, that's NOTHING, of the severe vertebral destruction shown by this previous MRI. New MO is all over it and wants to check it all out now.
Army Dr was so alarmed by this imaging, she made me tell her my final wishes before I could leave her office ( had not yet done my living will at that time). But MO shrugged his shoulders and said he didn't think we had a problem.
Is it any wonder any of us get a little upset or "lose it" from time to time?
Not to repeat myself, but God is in charge, not the doctors, not the scans and not us. I have to keep going back to this basic belief to keep myself calm and even-keeled on a regular basis.
Gumdoctor
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Gumdr that was beautiful thank you. I start whole brain radiation tomorrow and then I have 4 more days after the weekend, praying for reduced cells in the membrane x
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Delvzy,
As scary as this must be (I cannot even put myself in your shoes), it is a wonderful thing to have treatment available to address it.
I will be your prayer warrior from now until it is over.
Please try this: Before each session, pick one (or more) wonderful thing(s) to think about during treatment. Focus on that one thing the whole time (of course as much as you can...).
From a mindfulness perspective, this can reduce anxiety during your treatment session and make the whole thing a little less intimidating (if this is possible...I think it is...but I am not you).
Much love and many prayers coming up,
Gumdoctor
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Delvzy, You will be in my thoughts and prayers as you go through your treatments.
Hugs and prayers from, Lynne
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Delvzy,
I want to add my voice to the others who are praying for you, and agree with Gumdoctor and many others who believe that God is in control. Prayer is a powerful tool, and I have seen some pretty unbelievable answers to prayer in my life. Trust in Him, and know that you are loved and surrounded by support.
Lauri
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Delvzy,
Many hugs and prayers to you as you begin the next part of your travel down this road of MBC. Many of us are thinking of you and are here to listen and lend our support. Make as many good memories as you can during this time and treat every day as a blessing.
Crystle
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