Bone Mets Thread
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GG27 I'm in Vancouver...I will check the trial out thanks.
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Cristina, I'm with you in fear/anxiety over how my treatment is going. The pain I had yesterday may have been rib pain, but it felt different. So I wonder what is going on in the liver. I admit my head is not in a very hopeful place right now. I suspect I might be on Ibrance pretty soon. Please God. No throwing up. For the past 5-10 years, I tinkle when I vomit. LOL. Between worrying about the stress incontinence and hurting my bones when vomiting, I have become terrified of it. What kind of anti-nausea meds are you taking? I think you are doing very well, so keep that good attitude. Hopefully, if my pain responds well to the radiation I got the previous 2 weeks, my attitude will be better. I'm so ashamed. Today I've been thinking about giving up. I've barely begun to fight and I'm ready to give up. I need a kick in the pants, a gentle kick. Come on. We can do this.
Hi everybody. Best wishes for a good week.
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Don't be ashamed Dunesleeper. Its ok to have a down day, just don't stay there. Don't give up. We need you. XO
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Sending hugs and love, Dune.
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Good evening Family & Friends, I want to apologize for not keeping a open conversation on my page about what has been going on with me the past 6 days....I need to have your forgiveness on this one...cuz I had to make sure my family was informed and secured and felt comfortable for me to post this very personal info about my journey with my Cancer Diagnoses. So I am Home after being in the hospital for 6 days...I was enduring sever pain that woke me up out of a deep sleep 6 days ago..I't was located in my left leg,femur,groan area. I could not walk just tremendous pain. I texted my Doctor at 2am in the morning and he responded to take a double dose of my pain meds and he would arrange to admit me to the hospital the next day. Which was the 9th..I was given a CAT scan and the results returned with a massive tumors in my left hip,femur,and groan area...So my Doc told me that my Cancer is progressing rapidly and we needed to start radiation treatment ASAP and get me on an pain regiment for the pain...Family,friends..my cancer is in a progressive state as of today. I have to do radiation until the end of this mth...and also am on two oral chemo pills.
I decided yesterday that I did not want to stay any longer in the hospital and told my doc that I wanted to go home and make my life back to normal. He ask me if I was interested in a Nursing Home..."I send fuck no" kinda of surprised him with that out burst (lol) I need to go back to my life...he said ok I'll get you released papers..The reason for not communicating on FB is 1) I was totally Doped up. Witnesses Stacy Heath and Krista M Mitchell 2) I was not ready to release info until I notified my family. 3) I was not emotionally ready to talk about me being in a progressive stage in my disease that means my life has shorten. I probably will be not on here much because I need to focus on coming to some kind of understanding of what and is going to be the end of my life. I am scared to death and I have not come to terms with that part of my life, departing from my children...grand boys and family members...and all my dearest dearest friends i have made in my life. I have to come to terms with what God has plans for me now and understand and except this decision he as made to take me to his home. I love and cherish my family...friends...with all the love I have in my being...I need everyone of you to try to come and see me personally more now then ever. Please give me and my family a little break for a short while...not forever to get adjusted to this big change in our lives...I will promise to keep in touch when I'm feeling well enough to get on FB and Text Folks. Just please keep my children and grand kids and myself in your prayers...and I LOVE YOU ALL...PLEASE MAKE SURE YOU ALWAYS TELL YOUR FAMILY AND FRIENDS THAT YOU LOVE THEM DAILY...BECAUSE YOU DO NOT KNOW WHEN SOMETHING CAN TAKE YOU AWAY FROM THOSE YOU LOVE. THANK YOU AND GOD BLESS!!
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Oh Carla. Sending lots of love and hugs.
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Freebird53 what do I say, you have all my best wishes and hugs at these moments I wish there were other ways of reaching out. I know you don't know me from a hole in the ground but your words tear at my heart. This disease if anything is unpredictable in this I try to take hope.
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Oh Carla, I'm so sorry. Words seem not enough.
Dune, sorry you're down. If you're serious about a kick in the pants, I'll give you one, but really I think you need love from all of us.
I tried to go back to everyone's stories & I just lose my post & I'm sorry but I can't keep everyone's name & story straight, but just know that I care & my wish is for a cure for this bloody disease.... I'm tired of losing friends, both virtual & local.
G'nite all, sweet painless dreams... Dee
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Sending prayers your way Dune and Freebird.
Amy
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Dune, sending you love and hugs and prayers. We are all cheering for you!
Carla - I'm at a loss for words. Thank you so much for sharing this with us. Hoping and praying you are surrounded with love from your children and friends. Keeping you in my thoughts and prayers!
Dee - Thank you for that interesting article.
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Christina, Dune and Carla- I am sorry you are dealing with pain, and difficult decisions. Remember we are here for you and will support you in any way we can. Let family and friends help you as well.
Dee- Thanks for the article on the Oncogenomic trial and research. It sounds interesting and promising for you. I thought the video portion gave some good information.
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Carla and Charlene, I'm so sorry you're both in such dark places right now. I'm sure it's the pain and fear talking, and hospitalizations (Carla) can be extremely depressing, with way too much time to dwell in those dark places. Hopefully the rads will shrink whatever has been growing and bring you huge relief from the pain you've been having. And if the two oral chemos you mentioned are new, hopefully they will also work wonders for you very quickly.
Charlene, don't be afraid of Ibrance. Vomiting is just an oddball SE. I haven't heard of anyone having severe nausea or ongoing vomiting from it or needing anti nausea meds, as with chemo.
You are both in my prayers always, and more so today and until you both get past these emotional hurdles and are feeling much stronger!
Love you both, and sending hugs & prayers for brighter days ahead. Deanna
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Hi again Ladies,
I want to say sorry I was away so long but sure love the support and hope everyone has gotten what they need like I have it the past. This site has taught me so much and given me so much encouragement for what can be done. I hope it does the same for everyone. I am so fortunate to have my friends, family and support team. Here is a pic of my PSW son and I coming home after the fall and the brain mets and radiation. Whatever I need with my kids they will do for me and I know that also.
I am so fortunate! Keep up the fight my friends. I will.0 -
((hugs)) to Carla. You post when you can and focus on you for now. I"m wishing you peace and it breaks my heart to read this.
I continue in a downward spiral. I can feel the bone tumor a little bigger every day. I will discuss w my onc on Friday, I think I need scans. I've done 1 total round of Ibrance 75 mg and 1 half round on 125 mg. Is it too soon to say it's not working if I can feel the tumor enlarging? This is what I will discuss on Friday. My onc is also asking me if I need to take a leave of absence from work, they will support that as well. I am thinking of perhaps 3 days per week and 2 on disability and see how that goes for now. I am so sorry if I can't get positive.
Some moments I feel at peace, but most of the time I'm angry that I have to die and leave so young. I"d honestly feel much better if my kids were teenagers at least and able to care for themselves. They are just so young! Please stop cancer! I don't mind dying when they are older. I just need a few years. I don't think cancer is granting me that.
Love and hugs to all you lovely ladies.
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cjanet it was the same for me when I started on Tamoxifen scared to pieces crying all the time, well I am pretty emotional at the best of times. It took two months now it's shrinking, sometimes at night (why it's always at this time of day) I lay there and think it's growing and it hurts...why does it hurt? Our minds make us crazy and to some part unwell if I dwell to long on it. I can feel my body spiralling down or giving in to depair. So now that I'm conscience of this I try hard to be always positive it's hard and maybe I'm crazy. We do it for our children but sometimes the reserves are empty. Don't ever be sorry for being down it's hard and we all support you here. Get your scan and some new meds and get back to it. Big hug and lots of love I'm sending you from Canada.
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Cristina, you just don't know. That's the hard part. No one knows, one day on deaths door, or vice versa. I've read so many stories on here about women who were doing great and the not so great and women who were in so much pain, thought it was the end and it wasn't. For me, bc is such a head game. Hold on to today because you are here today. Be present today for yourself and your children whatever that may be, watching a favorite tv show in bed, coloring, play dough, take some selfies with them, eat dessert first...ect.
When you are able, I want you to go to this web sight and read the stories. Look up the stage iv stories and then read all the ones (all stages) on breast cancer. It helps me when I'm in a funk to be in a better head space.http://www.radicalremission.com/
I will be thinking of you and praying peace. XO
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Cjanet,
I was on Ibrance for three rounds. Round one, two weeks in I got sick. We thought Ibrance, stomach bug, flu. Broke out in a rash. Long story short... Allergic to codeine.
Ibrance did my bones good and got rid of pain. Didn't help my liver met. So I'm on Xeloda.
When you feel like crap, it's next to impossible to be big, brave and tough. You have to walk in these shoes to understand them. And thus we have this group that understands the roller coaster we share. All of us with grown children can feel the pain of those of you with young children.
Mary
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Freebird thankyou for your beautiful words. I hope you can use this site for support as needed. I have followed you on this thread for awhike now and, I am impressed with. your connection to the people, places and things you love. I hope they all give you comfort. now. I wish the radiation gives you substantial pain relief.
Cjanet,, I. hope you and your doctors find a way to manage SE so you get some quality of life. Sorry for your worry, and I wish you peace and good medical results.
I see my MO this week and plan on talking about increased pain, then today I had a great day with limitrd pain and no pain meds.I. did enjoy this beautiful day and wish. for all of us to have peaceful days ahead.
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cjanet--I feel your pain...at least the prayers, begging, pleading, bargaining with God to please let us make it long enough so that we know our kids will be ok...and remember us! My heart aches for you.
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kjones,
Your statement struck a chord...we live long enough to know our kids will be okay AND and remember us...oh my gosh how true and yet this is my prayer for my 6 little grandchildren...to remember us. I hope everyone has a pain-free and enjoyable day and that all of us seeing doctors or getting reports or results, it's great news.
Amy
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Hi ladies,
Thanks so much for the support. So they tried to schedule me for an MRI at 4 pm today. I am going out to dinner with my friends tonight at 4:30. I turned them down so fast. I just can't do it. I am looking forward to tonight and I don't care if things get delayed, I need to hold onto my friends and the good times, even if I delay a scan by a few days.
We'll see what they can do for me. If not, maybe I will delay my onc appointment until I can get a scan.
I know I'm being silly, but people have gone out of their way to take me out to dinner tonight. I am leaving one workplace so that I am just working in one place everyday instead of two, to simplify my life, and my friends want to to do this to say goodbye and thank me.
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Quick update with good news. Met my onc this morning who is not at all concerned about the PET/CT results. She thinks the uptake in my bones is most likely from healing and not spread, however she has scheduled an MRI of the painful areas in my back, hip and shoulder. If there is indeed cancer, she will radiate.
I guess my take-away here is don't let the nurse draw conclusions from the radiologist report and/or my prayers are working.
Amy
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Amy, what good news! Smiling for you! Valerie
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That's great news Amy
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Amy Great News!!!
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Amy I was just thinking of you. Glad your update is good!
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Amy - Woohoo good news!
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Great news, Amy!!! YaY!!!
Cristina, I'm really glad to hear that you opted for fun with friends over the MRI! It sounds like something you really need!
Saw my local onc this a.m. for my Faslodex shots. My neutrophils have really tanked @ 800, and my RBCs are borderline anemic. No wonder my energy level is non existent. Repeat CBC on Monday to evaluate starting Ibrance cycle #3. And fingers crossed for CA27-29 results which won't be back for a day or two. Last time (9/2, after 1 cycle of Faslodex+Ibrance), they were still climbing, albeit slower.
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Deanna, how are you doing with Faslodex? This is one of the treatment changes she may be recommending. She said two the first time, then one the following week then just once a month after that. Did I understand correctly? Any nasty SE for you?
Amy
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Hi all,
I'm going to be gone a lot in October between business travel and visitors coming to New Zealand (very exciting for us!). So I thought I'd apologise in advance.
Amy - hooray! So glad!
Deanna - fingers crossed indeed.
Cjanet - dinner with friends or MRI? Easy choice. Friends. Glad you made the right choice!
Well said, Mary, KJones, and Wendy.
3-16, glad you had a good day. I have days when I feel 90 and I hurt from head to toe, and other days when I am nearly pain free (arthritic knee never lets up). Hope you have more and more good days.
Dune, Carla, Dee, Myra (getting grandbaby cuddles, I reckon), Rachel, and everyone else (I hate brain fog)...sending love and hugs.
Terre
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