bone mets

powermom

Checking in for my daughter, she is 31yrs old, and has mets for 4 yrs. at this point, the mets are quite invasive throughout the bones, many lesions etc.., the onc had her on cytoxan and aromasin, but being that it did not help, started her on Halaven. so, i'd like to ask how good are the results with Halaven? What's next? Very surprised with the quick spread from 2 months ago. Does Halaven shrink the cancer or just will keep it from going further? Thanks in advance for your comments

Lilly9

I don't have any experience

I don't have any experience with this, so I can't be of any help.    I know that there are others on here that can.     I hope the meds help her.

button2

I'm sorry to hear about your daughter

I don't have any experience with these drugs, but would just like to wish you the best of luck with helping your daughter. I always said the worst thing for me would be if one of my children were sick, and I can't imagine what you are going thru. My own mother told me she wished to take my tumor and put it in her own breast when I first told her. I'm sure you feel the same. Peace and hugs, Anna

powermom

button2 said:

I'm sorry to hear about your daughter

I don't have any experience with these drugs, but would just like to wish you the best of luck with helping your daughter. I always said the worst thing for me would be if one of my children were sick, and I can't imagine what you are going thru. My own mother told me she wished to take my tumor and put it in her own breast when I first told her. I'm sure you feel the same. Peace and hugs, Anna

Thank you for your support.

Thank you for your support. Your mom thinks exactly like me, she has a whole life in front of her, it's not normal. I honestly think i didn't get it thru my head yet, because i don't know how i function otherwise. The world doesn't know, i always feel it's very cumbersome to explain all detail to e/o all the time. It's simpler that way. So it's all smiley out to the world and we try our best. We laugh, we argue, we try to make it as "normal" as possible. Sorry, Anna, for what you have to go thru. i thought i'd hear from more ppl, bu so far..

MrsBob

my med

Hi! 

So sorry to hear about the progression. I want you to ask her Onc about Xgeva shot. Its to build bones up with calcium BUT it is showing to have cancer blocking properties as well. Once I started this shot my tumor markers went way down. My bone lesion hasnt grown.

Sending prayers up for you and your family

Melissa

GlowMore

powermom said:

Thank you for your support.

Thank you for your support. Your mom thinks exactly like me, she has a whole life in front of her, it's not normal. I honestly think i didn't get it thru my head yet, because i don't know how i function otherwise. The world doesn't know, i always feel it's very cumbersome to explain all detail to e/o all the time. It's simpler that way. So it's all smiley out to the world and we try our best. We laugh, we argue, we try to make it as "normal" as possible. Sorry, Anna, for what you have to go thru. i thought i'd hear from more ppl, bu so far..

Bone Mets

So far I have been a Miracle Survivor according to my Oncologist....the one who just retired and left me to find a new one.... (HOW COULD HE DO THAT?  retire I mean)    But anyway.........

This business of having it metastasize to the bones is one that we all are afraid of happening.  Not a woman on here wants to get the news of any Mets at all.....but there are a LOT of women on here who are dealing with Mets......and many have survived for YEARS.  The very idea of our children having this dread disease is one NONE of us wants to ever deal with....but it is in your life and you must do the best you can now.  Having Expectations of others is pointless too.......let that one go Mom.   I have found that 'expecting' anything from friends and family is a total waste of time......they sometimes just don't know how to talk to you about this and often are guilty that their kids are ok and yours is not.   Forgive them because they really don't understand.....we here do understand....at least about the fact that Life will never again be "Normal".   I hope and pray for you to find a way to deal with this ..... I believe in God and I believe in Jesus Christ and that has been my strength.     Take it one day at a time PM....... Hugs and Encouragement.  Glo

powermom

GlowMore said:

Bone Mets

So far I have been a Miracle Survivor according to my Oncologist....the one who just retired and left me to find a new one.... (HOW COULD HE DO THAT?  retire I mean)    But anyway.........

This business of having it metastasize to the bones is one that we all are afraid of happening.  Not a woman on here wants to get the news of any Mets at all.....but there are a LOT of women on here who are dealing with Mets......and many have survived for YEARS.  The very idea of our children having this dread disease is one NONE of us wants to ever deal with....but it is in your life and you must do the best you can now.  Having Expectations of others is pointless too.......let that one go Mom.   I have found that 'expecting' anything from friends and family is a total waste of time......they sometimes just don't know how to talk to you about this and often are guilty that their kids are ok and yours is not.   Forgive them because they really don't understand.....we here do understand....at least about the fact that Life will never again be "Normal".   I hope and pray for you to find a way to deal with this ..... I believe in God and I believe in Jesus Christ and that has been my strength.     Take it one day at a time PM....... Hugs and Encouragement.  Glo

Glo, it was fun readg ur

Glo, it was fun readg ur post. Luv the "smile" relief. Yep, i agree w all u mentioned. Thanks for your faith and encouragement. She tires to make life very normal, aside from all the time she has to give for the docs visits, which are often now. She keeps very involved in helping the community(non of them, know what she is going thru), and her focus is totally on the little girls. One day at a time. No it's not Normal. And just to unload, she is very close to her sibs, they are younger still, the girls at 25 went for mams already. It's been devastating to them, to see their sis go thru this. Glo, you have mets to the bones? Whick chem were you put on? Thx again,

powermom

MrsBob said:

my med

Hi! 

So sorry to hear about the progression. I want you to ask her Onc about Xgeva shot. Its to build bones up with calcium BUT it is showing to have cancer blocking properties as well. Once I started this shot my tumor markers went way down. My bone lesion hasnt grown.

Sending prayers up for you and your family

Melissa

Hi Melissa, thx for the

Hi Melissa, thx for the advice but, yes she's on Xgeva too, taking Neupogen 3 x wk now, oh=n her wk off. It's 2 wks on Halaven and one off. I hate when she has to think bt it, pretty much all the time. I wonder when onc will order Pet-Ct again. This time even thou she was on chem drugs, it seemed that it spread so fas to all the areas of the bones. Being in the skull freaks me out. I know the onc likes her, she is doing all she can, i just hope its the right decisions.She has lesions, and bunch of stuff on her spine, skul, iliac. pelvis etc...and she tries to take care of the fam (2 young girls) as if all is well. She is my heroine. thx for your prayers, always helpful. Keep guard on your behalf.

GlowMore

powermom said:

Glo, it was fun readg ur

Glo, it was fun readg ur post. Luv the "smile" relief. Yep, i agree w all u mentioned. Thanks for your faith and encouragement. She tires to make life very normal, aside from all the time she has to give for the docs visits, which are often now. She keeps very involved in helping the community(non of them, know what she is going thru), and her focus is totally on the little girls. One day at a time. No it's not Normal. And just to unload, she is very close to her sibs, they are younger still, the girls at 25 went for mams already. It's been devastating to them, to see their sis go thru this. Glo, you have mets to the bones? Whick chem were you put on? Thx again,

No I don't.....but

Everytime I go I wonder.........will this be the time it happens?   (mets)  So far I had mets only to the lyph nodes under my arm...they took 19 nodes and 6 had cancer cells.  That is why I had to do the chemo and radiation....Mine is Triple Negative Stage IIIA.... I can't take the medicines so many can take because mine is not Hormone Driven.  I am a 12 year Survivor and this year the Onc told me I could go a whole year without coming back....but a week later called to tell me............OOPS.........because my CA 27-29 came back too high  (should be under 30 but was 47)...so  I had to go for another bunch of blood tests and will see my new oncologist in a few weeks.  My old one Retired.   My post earlier to you was just that I very much hoped you would find a way to let go of the Panic and Hold On to Each Day and I pray for you to find the strength to do that.  Having your girl hurting has got to be the most terrible thing you have ever faced....my heart goes out to you Mom.  Sending Hope and Prayers.  Glo

GlowMore

powermom said:

Hi Melissa, thx for the

Hi Melissa, thx for the advice but, yes she's on Xgeva too, taking Neupogen 3 x wk now, oh=n her wk off. It's 2 wks on Halaven and one off. I hate when she has to think bt it, pretty much all the time. I wonder when onc will order Pet-Ct again. This time even thou she was on chem drugs, it seemed that it spread so fas to all the areas of the bones. Being in the skull freaks me out. I know the onc likes her, she is doing all she can, i just hope its the right decisions.She has lesions, and bunch of stuff on her spine, skul, iliac. pelvis etc...and she tries to take care of the fam (2 young girls) as if all is well. She is my heroine. thx for your prayers, always helpful. Keep guard on your behalf.

Ask the Oncologist

I might be off base but isn't Neupogen the same as Neulasta?  Except with Neulasta you only have to have ONE shot per month vs all those many shots per week.    I remember way back in 2002 they wanted me to come down there every day for 14 days for a Neupogen shot and I just balked at that and I said so........and lo and behold there was a new thing called Neulasta....super expensive but you only had to have one a month.  My Onc ok'd it for me.........and I was so glad not to have to go so often.

powermom

GlowMore said:

Ask the Oncologist

I might be off base but isn't Neupogen the same as Neulasta?  Except with Neulasta you only have to have ONE shot per month vs all those many shots per week.    I remember way back in 2002 they wanted me to come down there every day for 14 days for a Neupogen shot and I just balked at that and I said so........and lo and behold there was a new thing called Neulasta....super expensive but you only had to have one a month.  My Onc ok'd it for me.........and I was so glad not to have to go so often.

back to you

Glo, i love ur directness, and YOU said it right on the panic issue, sometimes i wake up in middle of the nt or can't sleep much, i try really hard to move on, and i do, but...to be honest, it's always there; she always loved high heels, the higher the better, bcs of the pain she figured out that flats work best, she didn't tell me right away but it came out and that breaks my heart. You could imagine, from her point of view, she hates i share w her this monstruosity(as she calls it), she wants to b as "normal" as possible, so we don't go on much bt it, only the necessary stuff. No one besides my nuclear fam is aware that she has mets. I stopped workg, bcs when she calls me that she needs s/o to b there for the kids, bcs she has to have a test, or being at the onc is takg longer, i wanna always be available, no questions.  Her mets, came 2 yrs after dx. Since then, she was always on somtg, she had a hysterectomy, but now they way it spread and the speed, it's scary.

I looked up what you mentioned bt Neulasta, this is what i came up with - If you are having weekly, low-dose chemotherapy, Neulasta is not an option. Since Neulasta must be given 24 hours after chemo, and 14 days before the next cycle, it won't work with weekly infusions. Neupogen will work fine with weekly chemo, since it clears your system fairly quickly, and can be given as often as you need it between chemo cycles.   

So i guess, that's the answer. I truly appreciate you talkg bt it, i would very much like to hear and know if there is something else out there, always willing to learn. I will tell her when she goes tom, to ask bt takg it at home, less stressful, let's see what they say.

It really sucks when any doctor that we clicked with retires or..., but ur onc, that's the pits. I feel for you. Who found the substitute, you were able to get someone you liked or the ins told you where to go. Our cardiologist of 30 yrs, just informed us that he can no longer accept ins, w this obamacare, there are so many intricacies, so either we pay for the visit or...yep, and my daughter's onc, had to give up her private practice and join a large group bcs of the same pressures. Going to her was much nicer, quieter, e/o knew who we were, now everytime she has to check in w her identity, name etc...not fun. Glo, how about they just order Pet scan for you, so they will know if somtg is there or not, if they see the CEA is elevated? But, i'm sure you know, the numbers don't always mean it's really somtg going on right now, as we are told, it's just another way of verifying, her onc, doesn't even like to take these tests, she says it's very "iffy". Hope you stay in touch, and thx a lot. Keep up ur spunk!