Bone Mets Thread
Comments
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Zarovka, I have been struggling since quick progression on my first tx of Ibrance(3 months and out). So many doors closed with that progression. I'm coming to find some sense of equilibrium but it is hard. I hope you find a sense of equilibrium as well. Know many pray for you.
Mary
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50sgirl...I will definitely seek counselling. I don't have any inhibitions about admitting it when I need help. I believe the breast care nurse is also a psychologist....at least I think my oncology trial nurse told me that some time ago but I'll check. I'm not on anti depressants and I don't think I need them. I know I don't have clinical depression and I'm not depressed all the time. I still have my enthusiasm for life so I'm not concerned that I'm truly depressed but I won't be stubborn about it if it's suggested. I have tried anti depressants before and that's another sad story. My husband didn't believe I was physically ill for all those years before my diagnosis and kept giving me anti depressants to try (he's a doctor) and they didn't suit me. They gave me suicidal thoughts and that's not me at all.
My friends have rallied round and I'm so grateful for that. One of them has begging me to let her help me but there was really nothing I needed help with at that time but yesterday I sent her a message on Facebook asking her whether she'd help me turn the tiny balcony on the apartment into a garden and she jumped at it, full of enthusiasm and excitement! What's more she's going to come to start on it next Tuesday. I'd thought I would have to wait ages for help and have it done gradually but we've decided we can do it in two stages. She hasn't seen it yet so we'll do some and get an idea exactly what else is needed. I'm so excited about this I couldn't sleep last night. I've always loved my garden and I need to have flowers and greenery around me.
Z.....why did he decline a breast care nurse on my behalf? You tell me! I think he had the idea that he didn't like a stranger coming to the house and "interfering" and that he could help me with everything. As you can see, he didn't and he's only made things worse.
I'm feeling a lot happier today as it dawned on me yesterday that I've wanted to leave a few times and have been unable to but this time I can't go back because here I'm independent and at home I'm an invalid and dependent on my son. Who would choose the latter when they can have the former? Not me. I'm actually feeling healthier the last few days and I believe I will see an improvement in my health status because of the removal of all that stress.
JFV...I'm sorry you're feeling low too. It's well known that anyone who is struggling with life issues has a tough time around Christmas and holiday times. You're making a wise choice.
Babs..... what can I say? You all look so happy and you look wonderful. Your daughter is gorgeous and your attitude is something to behold. You've made everyone so happy by being there at this special time, even all of us as we look at your beautiful photos and share your joy. I love your practical attitude and your love for your daughter shows; knowing that she will be cared for should there be a need but I'm hoping that that time is a long, long way ahead as you have so much to look forward to, with a little grandson coming along.
Love and hugs to you all. I'm seeing my oncologist tomorrow and hoping my TM reflects how I feel clinically but not placing too much store by it.
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50sgirl...I will definitely seek counselling. I don't have any inhibitions about admitting it when I need help. I believe the breast care nurse is also a psychologist....at least I think my oncology trial nurse told me that some time ago but I'll check. I'm not on anti depressants and I don't think I need them. I know I don't have clinical depression and I'm not depressed all the time. I still have my enthusiasm for life so I'm not concerned that I'm truly depressed but I won't be stubborn about it if it's suggested. I have tried anti depressants before and that's another sad story. My husband didn't believe I was physically ill for all those years before my diagnosis and kept giving me anti depressants to try (he's a doctor) and they didn't suit me. They gave me suicidal thoughts and that's not me at all.
My friends have rallied round and I'm so grateful for that. One of them has begging me to let her help me but there was really nothing I needed help with at that time but yesterday I sent her a message on Facebook asking her whether she'd help me turn the tiny balcony on the apartment into a garden and she jumped at it, full of enthusiasm and excitement! What's more she's going to come to start on it next Tuesday. I'd thought I would have to wait ages for help and have it done gradually but we've decided we can do it in two stages. She hasn't seen it yet so we'll do some and get an idea exactly what else is needed. I'm so excited about this I couldn't sleep last night. I've always loved my garden and I need to have flowers and greenery around me.
Z.....why did he decline a breast care nurse on my behalf? You tell me! I think he had the idea that he didn't like a stranger coming to the house and "interfering" and that he could help me with everything. As you can see, he didn't and he's only made things worse.
I'm feeling a lot happier today as it dawned on me yesterday that I've wanted to leave a few times and have been unable to but this time I can't go back because here I'm independent and at home I'm an invalid and dependent on my son. Who would choose the latter when they can have the former? Not me. I'm actually feeling healthier the last few days and I believe I will see an improvement in my health status because of the removal of all that stress.
JFV...I'm sorry you're feeling low too. It's well known that anyone who is struggling with life issues has a tough time around Christmas and holiday times. You're making a wise choice.
Babs..... what can I say? You all look so happy and you look wonderful. Your daughter is gorgeous and your attitude is something to behold. You've made everyone so happy by being there at this special time, even all of us as we look at your beautiful photos and share your joy. I love your practical attitude and your love for your daughter shows; knowing that she will be cared for should there be a need but I'm hoping that that time is a long, long way ahead as you have so much to look forward to, with a little grandson coming along.
Love and hugs to you all. I'm seeing my oncologist tomorrow and hoping my TM reflects how I feel clinically but not placing too much store by it.
I deleted the post above because my laptop played up and it posted the same post twice.
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Hi Lita. So glad to see you. Sending lots of hugs!
Babs
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Wendy, I am thinking about you. I’ve missed most of the thread since being out of service. I wonder if maybe you have a compression fracture. My husband worries about that for me being the lower and mid spine have mets. I was put on Ibrance and Faslodex for six months and then I got liver mets. I’m not so sure about that drug. Now Xeloda is failing me I think. Liver enzymes and TMs are starting to rise. Must be the season for all of us to have new issues. I’m waiting on a CT and see what the next step will be. I’m really discouraged but I hope they get your pain under control. You could always go to the ER and they might move a little faster if the pain worsens.
Hugs to you.
Anita
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Babs. Have fun in Paris. Good luck with your grand baby. I hope the rads work for you. I’m thinking of you.
Hugs
Anita
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Just said good bye until our return on 12/16 for dd birth. Had the best time. Love to see how her dh adores and loves her so much and only wants to make her happy. That’s every parents greatest wish but even more so living so far away !
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Making lots of memories with my Dh and Dgss!!
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What a Gorgeous couple Babs! There is nothing more heartwarming than seeing our children happy! I can't wait to see your new grandbaby! Save travels!
Hugs and prayers,
Claudia
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Bigbhome, that is a gorgeous photo with your DH and grandsons. Frame that one for the wall.
Bab, wishing you safe and easy travel home, and then back to Paris in December. What an awesome SIL to be so caring which I'm sure is very comforting to know.
Hugs to all.
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BigB- Your love for those kids shines in the photo! Making memories is gift.
Babs- Safe travels! Paris should be part of treatment...it's so good for you
Your daughter is beautiful and you are right, knowing our girls are loved is the best!Adjusting our sails indeed...
Lita- will add your friends to the list of folks needing special prayers.
Leapfrog- Peace of mind is a real benefit. Friends do come through and now you have time to spend with them! Looking forward to pictures of the garden.
Z- Hope you can enjoy the rest from the treatment. You just did the intense protocol in Japan so a break may be a good thing.
Can we ask cancer to take a holiday so we can enjoy our lives for a few weeks?
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BigB. What a great picture! Your grandsons are adorable. Enjoy every minute with them and your DH
Bab
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Babs, such a wanderfull picture! We can feel the Love!
I have question - did somebody have experience with Xgeva injections. The doctor suggested them, but I am concerned with the side effects , on the top of Ibrance.
Thank you
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Blueshine,
My MO at Dana Farber started me on Xgeva right away with Faslodex and Ibrance. Faslodex and Ibrance failed me so now one Xeloda which I think is failing me too. I get Xgeva every 5-6 weeks per my MO at Dana Farber. I haven’t had any side effects except maybe a tiny bit of flu feeling for a day. It works great to strengthen your bones from bone mets. Hope this helps. You should be fine taking it.
Anita
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Wow Z, I guess I shouldn't be complaining about meds delay! Actually have them coming tomorrow finally....
Blueshine, I also get Xgeva shots and like Photogirl said I get a little achy for a day, that's about it. To me the shot hurts way less in the abs than the back of my arm.
Happy flight babs, great photos!
I love your photo too Bigb. Really adorable!
Love the quote dlb!
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Claudia, great pic and good luck on the 12th.
Lisa, so sorry to hear of progression, but definitely check out the Xeloda thread. I've heard many good things and wish you the best on whatever your new protocol will be.
Here's hoping we can all adjust our sails to enjoy quality friends and family time during the upcoming holidays.
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Well ladies, the news wasn't what I wanted. All three of my tumor markers are up. One by quite a bit. And my calcium is up too. So inlight of that, I'm having a PET on Friday and a bone scan on Tuesday then I see him again the week following. Those tumor markers have been bothering me as they have been rising for about six months now, just a little more each time. Will let you all know when I find out what I find out. He said Ibrance is next for me.
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Thank each and every one of you for responding, and more importantly, for caring! I’ve struggled with depression most of my adult life. I’ve had counseling and I’ve been on an antidepressant consistently since my original diagnosis. Let me clear this up, though. I’m not tired of fighting this beast, and I’m not tired of living.. I’m physically exhausted. Like the very idea of doing anything exhausts me. I make silly excuses just so I don’t have to get dressed or leave the house on weekends. I even beg off when people want to visit. Making myself go to work everyday is almost too much to bear. The only reason I do is because I live my kids more than I hate my job
is no one else just sincerely tired? Or am I just lazy as hell?0 -
Swess - I am very tired. I can't see working through this. You are amazing that you pull it off.
Gracie - Hugs. Great waves of support while you go through the PET scan. I am glad you know what is next.
Photogirl - I wish the road ahead was a little smoother but it's just another bump. If you are being seen at Dana Farber, there is a solid next step.
>Z<
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Swess, pre-diagnosis I was so tired I had to sit down to brush my teeth in the morning. After work I would park close to home and nap for 20 minutes. I didn't want my husband to know how bad off I was and needed strength to make it through dinner. But days after I started therapy my energy started to return.
Working full time and taking care of family? Lazy, no. I'm not sure what protocol you're on, but talk to your doctor and maybe an adjustment in meds is necessary. Best of luck, know we're pulling for you.
Gracie, sending you support and positive vibes as things unfold. If Ibrance is in your future, it's a very doable therapy.
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SwessI am exhausted. I no longer work and my kids are older. I'm sleeping 10 to 12 hours a night and napping. Pat yourself on the back. You are doing great !0 -
Artist so happy you’re FINALLY getting the Ned’s! Wow it’s about time!
Swesd I work ft and don’t have kids at home and on the weekends I lay in bed. It’s just not easy. Cut yourself some slack
Gracie sending you positive vibes for your upcoming tests
Babs
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Swess, I work full time but since this medication Xeloda I’ve been taking it affects my energy level. Since we have a family business, my parents send me home at 2 and I usually take a nap and sleep so sound then I’m good to go again. Do what your body tells you. Don’t be hard on yourself there is so much going on in your body.
Hugs 🤗
Anita
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Just saw a very short article saying biotin may interfere with lab results. There very essentially no details. Has anyone seen information on this?
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Swess....there's no way you're being lazy. Don't beat yourself up. We all feel like that. I don't work and, like Jaylea, I used to sit down to brush my teeth! I don't know what treatment you're on but it's safe to say it's not you at all. You're just plain physically exhausted. The fatigue hits me like a wall about halfway through the third week of Ibrance. After a while on it you get used to it but it's never easy. I always feels as if I'm plodding through mud; everything I do is so hard so no, you're not lazy. Don't even think that for a second. This is hard work we're doing.
Gracie...I already sent you hugs and prayers on another thread but just a reminder
Claudia and Babs....gorgeous photos!
Love to all. Speaking of tired, that's me off to bed. I was up at 4.45am today to get ready for my oncology consult.
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Kaption - I was just reading that. It didn't seem to effect anything that I measure ... they have seen it impact the thyroid function tests and other tests to measure heart function. Maybe relevant to people in this forum.
I love my biotin. My hair is thick and my nails are strong and it makes me feel a bit less like a cancer patient.
But to be careful one make back off for a couple days before blood tests of heart and thyroid function.
>Z<
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z-think I’ll take break from it. I don’t have any hair anyway and my nails have always been good. I’ll get back on it if I ever get another chance to grow hair! Seems to impact those over 50 most.
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although I hate you’re going through it, it’s good to not feel alone. I’m pretty sure most people think I’m just lazy. I could spend days just laying in bed except the guilt of wasting my life eventually catches up with me. It’s like being stuck between a rock and a hard place.
Im currently on Kisqali and aromasin, with xgeva shots once a month. From what I understand, it’s the most gentle of all treatments. And like I said, I’m not in pain, and ingeneral I don’t feel sick.. just tired, so I shouldn’t complain. I’m an oncology nurse and every single day I’m reminded how lucky I am.
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Swess - I was on Ibrance and letrozol for 18 month. Stopped the ibrance two months ago and continued letrozol until just recently. I cannot tell you how much more energy I have, how much more alert I am. It's not an easy treatment, or it wasn't for me.
>Z<
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