Doxil Has Failed

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  • camul
    camul Member Posts: 2,537
    #22
    SIROD said:

    For Carol:

    I used every hormonal there was except Aromasin.  I am waiting for the proper time to use it with Afinitor.  It hasn't been 2 years yet since Faslodex failed me.  I want to give it at least 3 years.  How is Aromasin doing for you?

    I wish that the FDA would approve Palbociclib (PD 0332991) which is now in trial in Phase III.  I read good things about it.  This one is for us with advanced bc.

    Carol, since you have bone mets, did you have fractures?  I don't remember doing anything to my shoulder that would have caused a fracture.  Unlike when I was on Arimidex and had 3 fractures in the vertebrae from a fall on ice.

    Best to you,

    Doris

     

    No fractures yet Doris!

    ER doc said it does not need to be an injury to get fractures w/bone mets. That lifting a grocery bag, reaching for something, even just walking I could fracture a bone. My pain dr said she has had patients who have fractured hips rolling over in bed. I have areas in my pelvic/hips that look like a catacomb from the tumors. I am so sorry that you have the fractures, the mets are so painful alone, I dont know how I would cope if I had fracture pain on top of it. I am still tolerating the Aromasin with only dry mouth, puffy, and not much of an appitite. I do try and eat something in the morning like half a bagel or fruit or yogurt so I dont get a headache. I know it isnt keeping the tumors stable now or I wouldnt have new activity. It was still my last option a month ago, so I will stay on it and keep hoping and praying that it works enuf to keep me around until they do approve something that I can take! Doris, I hope you find something that helps with the pain.... and I believe your "f" word totally fits the situation! Hugs, Carol

  • SIROD
    SIROD Member Posts: 2,194 Member
    #23
    camul said:

    No fractures yet Doris!

    ER doc said it does not need to be an injury to get fractures w/bone mets. That lifting a grocery bag, reaching for something, even just walking I could fracture a bone. My pain dr said she has had patients who have fractured hips rolling over in bed. I have areas in my pelvic/hips that look like a catacomb from the tumors. I am so sorry that you have the fractures, the mets are so painful alone, I dont know how I would cope if I had fracture pain on top of it. I am still tolerating the Aromasin with only dry mouth, puffy, and not much of an appitite. I do try and eat something in the morning like half a bagel or fruit or yogurt so I dont get a headache. I know it isnt keeping the tumors stable now or I wouldnt have new activity. It was still my last option a month ago, so I will stay on it and keep hoping and praying that it works enuf to keep me around until they do approve something that I can take! Doris, I hope you find something that helps with the pain.... and I believe your "f" word totally fits the situation! Hugs, Carol

    Palbociclib (PD 0332991)

    Why not ask your doctor if you could have Palbociclib (PD 0332991) for compassionate use.

    Might be worth a try, Carol.

    Hugs,

    Doris

     

     

  • SIROD
    SIROD Member Posts: 2,194 Member
    #24
    New Flower said:

    Hi Doris

    I am not sure if you remember, I was on xeloda for 8 months. I am a big fan of this medication. It did help me alot.

    Let me know if you decide to start. I will email you some useful tips.

    Hugs

    To New Flower

    Hi,

    I will let you know if the oncologist recommends it as my next drug.  I will need those tips.  I do remember now that you were on Xeloda.

    Hugs to you too.

    Doris

  • SIROD
    SIROD Member Posts: 2,194 Member
    #25
    aisling8 said:

    I agree with the F asterisks word

    It's just so devastating to know it didn't work. You've been so valiant and uncomplaining. Makes me want to kick something when I read your post.

    i hane no doubt you'll rally and give another drug your all. I just didn't want you to have to.

    Sending hugs and good thoughts coast to coast.

    xoxo

    Victoria

    To Victoria

    If there ever was a word that fit it is that one.  I so wanted to be stable to go on the next 3 months knowing how to deal with the drug and so on.  Wasn't meant to be.

    Thank you for the hugs and good thoughts from coast to coast.

    Hugs to you,

    Doris

  • SIROD
    SIROD Member Posts: 2,194 Member
    #26
    GlowMore said:

    TWENTY YEARS....

    Highly doubtful if I will reach 20 years since I am now 78 and at 12 years from Diagnosis.  How you have done it all this time and remained sane is a testiment to courage if you ask me.   I would never be able to use hormonal therapy...mine is the Triple Negative kind.......and to tell the truth at my age I am not at all sure I would do chemo again, but I can't say I wouldn't...it is just that the chemo almost kills you and I'm not as strong now as I was 12 years ago.  I love your picture ...it looks like the Pacific Coast...... I once lived in San Francisco and so loved it there.   Thanks for the good wishes.........my tumor markers came back a little elevated this week but I may not have to worry about it for another few months and then do another CA 27-29    ........    For me the endurance comes from my belief in Miracles...and firm conviction that God is Good...........He puts us where we need to be .....most of the time.   Hope you have a peaceful weekend....  :)  Hugs, Glo

    For Glo

    I live on the east coast and lots of people use to say that the section I lived in reminded them of the Oregon and Washington.  I once did some tour guiding for cruise ships.  I never been to San Francisco, photos always made it look lovely.

    Hugs to you,

    Doris

  • Pixie Dust
    Pixie Dust Member Posts: 424 Member
    #27
    You Seem To Be Fighter

    Doris, I do not know you personally but have read your blog and for all the many years you have had this dreaded beast you have become a warrior and and fought this in an amazing way. I really hate to hear this news about you but we are all in this together. Some not so bad, and some worse but we are all sisters and brothers in this and are fighting for each other for better days to come a head of us. Sure do hope your treatment does you well, they are alot out there that can be used for you. Keep up the fight that you have for many years and kick this beast like you have never ever before. Hugs to you,   Pixie Dust

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #28
    SIROD said:

    For Glo

    I live on the east coast and lots of people use to say that the section I lived in reminded them of the Oregon and Washington.  I once did some tour guiding for cruise ships.  I never been to San Francisco, photos always made it look lovely.

    Hugs to you,

    Doris

    What to do next . . .

    I'm so sorry the Doxil is done, Doris, and I hope they find another regimen tht works for you.  I hope I don't offend anyone, but there are just times with the F word is so perfect.  And so versitile!  Why, it can be an adjective, f---ing cancer, it can be a verb - f--- cancer, and you can even use it as an adverb f---ingly stupid cancer, oh and I guess even a noun, F---head!  And so I'm using it in all of the instances for this situations, Doris amd Carol and Eileen, at least in my thoughts if not out loud.  I will also send a few prayers your way, without using that word.

    Suzanne

  • New Flower
    New Flower Member Posts: 4,294
    #29
    Double Whammy said:

    What to do next . . .

    I'm so sorry the Doxil is done, Doris, and I hope they find another regimen tht works for you.  I hope I don't offend anyone, but there are just times with the F word is so perfect.  And so versitile!  Why, it can be an adjective, f---ing cancer, it can be a verb - f--- cancer, and you can even use it as an adverb f---ingly stupid cancer, oh and I guess even a noun, F---head!  And so I'm using it in all of the instances for this situations, Doris amd Carol and Eileen, at least in my thoughts if not out loud.  I will also send a few prayers your way, without using that word.

    Suzanne

    Suzanne thank you

    I like this  language art  game. Do not forget WTF  

  • New Flower
    New Flower Member Posts: 4,294
    #30
    Pixie Dust said:

    You Seem To Be Fighter

    Doris, I do not know you personally but have read your blog and for all the many years you have had this dreaded beast you have become a warrior and and fought this in an amazing way. I really hate to hear this news about you but we are all in this together. Some not so bad, and some worse but we are all sisters and brothers in this and are fighting for each other for better days to come a head of us. Sure do hope your treatment does you well, they are alot out there that can be used for you. Keep up the fight that you have for many years and kick this beast like you have never ever before. Hugs to you,   Pixie Dust

    You might want to ask your oncologist about medication for bone

    Doris, as Carol said, if someone have bone met it does not take much to have a fracture. I had a fracture while having dinner watching TV, then move fast to grab salt. Tumor makes bone very fragile. You might want to ask your oncologist about medication for bone strenethening since you have fractured. Of Course both Ca and high Doseof Vit D3 are strongly recommended. I am on Xgeva shot for bones.

    hugs

  • camul
    camul Member Posts: 2,537
    #31
    Double Whammy said:

    What to do next . . .

    I'm so sorry the Doxil is done, Doris, and I hope they find another regimen tht works for you.  I hope I don't offend anyone, but there are just times with the F word is so perfect.  And so versitile!  Why, it can be an adjective, f---ing cancer, it can be a verb - f--- cancer, and you can even use it as an adverb f---ingly stupid cancer, oh and I guess even a noun, F---head!  And so I'm using it in all of the instances for this situations, Doris amd Carol and Eileen, at least in my thoughts if not out loud.  I will also send a few prayers your way, without using that word.

    Suzanne

    Suzanne
    You are totally right, I do recall using that word in all contexts, and not only in regards to cancer. Laughing here! Iam sure you, Victoria and Diana have maybe heard it slip once or twice! But, only in the correct context!
    You made me smile today!
    Carol
  • TraciInLA
    TraciInLA Member Posts: 1,994 Member
    #32
    New Flower said:

    You might want to ask your oncologist about medication for bone

    Doris, as Carol said, if someone have bone met it does not take much to have a fracture. I had a fracture while having dinner watching TV, then move fast to grab salt. Tumor makes bone very fragile. You might want to ask your oncologist about medication for bone strenethening since you have fractured. Of Course both Ca and high Doseof Vit D3 are strongly recommended. I am on Xgeva shot for bones.

    hugs

    More on "that word"

    When I first got the news of my diagnosis, I called my partner on the phone, and the very first word out of her mouth was "F***!"  And it was the most honest, appropriate response I got from anyone.

    We've all been bludgeoned over the head with all the "you have to stay positive" stuff from well-meaning people, but anger is a perfectly normal, healthy response to cancer.  

    Having a place to be angry when we need to is one of the most valuable, necessary things about being a part of this board.

    Traci

  • aisling8
    aisling8 Member Posts: 1,627 Member
    #33
    TraciInLA said:

    More on "that word"

    When I first got the news of my diagnosis, I called my partner on the phone, and the very first word out of her mouth was "F***!"  And it was the most honest, appropriate response I got from anyone.

    We've all been bludgeoned over the head with all the "you have to stay positive" stuff from well-meaning people, but anger is a perfectly normal, healthy response to cancer.  

    Having a place to be angry when we need to is one of the most valuable, necessary things about being a part of this board.

    Traci

    F***ing A Right!!

    So, Doris, turns out in addition to sending you love and support we're using your post to applaud one very useful word.

    Still sending you hugs and energy!!!

    xoxo

    Victoria

  • SIROD
    SIROD Member Posts: 2,194 Member
    #34
    Double Whammy said:

    What to do next . . .

    I'm so sorry the Doxil is done, Doris, and I hope they find another regimen tht works for you.  I hope I don't offend anyone, but there are just times with the F word is so perfect.  And so versitile!  Why, it can be an adjective, f---ing cancer, it can be a verb - f--- cancer, and you can even use it as an adverb f---ingly stupid cancer, oh and I guess even a noun, F---head!  And so I'm using it in all of the instances for this situations, Doris amd Carol and Eileen, at least in my thoughts if not out loud.  I will also send a few prayers your way, without using that word.

    Suzanne

    For Suzanne

    Thanks, Suzanne for I certainly can use all the prayers and positive thoughts on Wednesday.  

    I agree it is a very versatile word.  I don't hear it when some young person uses it.  I no longer react.  However, for cancer, I think it is a word that fits in the manner of annoyance, anger and etc.  Working with students, tourists and members of the public., I was always careful to not use the word.   Least it slip out inappropriately while doing my job.  Thursday, I was so hoping, praying that the results would be stable that the word just slipped out.

    Doris

  • SIROD
    SIROD Member Posts: 2,194 Member
    #35
    Pixie Dust said:

    You Seem To Be Fighter

    Doris, I do not know you personally but have read your blog and for all the many years you have had this dreaded beast you have become a warrior and and fought this in an amazing way. I really hate to hear this news about you but we are all in this together. Some not so bad, and some worse but we are all sisters and brothers in this and are fighting for each other for better days to come a head of us. Sure do hope your treatment does you well, they are alot out there that can be used for you. Keep up the fight that you have for many years and kick this beast like you have never ever before. Hugs to you,   Pixie Dust

    Pixie Dust

    I intend to continue fighting but it would have been so wonderful to have continued on the same treatment instead of finding another.  It all the side effects that one must learn to live, adjust to all over again.

    Best to you,

    Doris

  • SIROD
    SIROD Member Posts: 2,194 Member
    #36
    New Flower said:

    You might want to ask your oncologist about medication for bone

    Doris, as Carol said, if someone have bone met it does not take much to have a fracture. I had a fracture while having dinner watching TV, then move fast to grab salt. Tumor makes bone very fragile. You might want to ask your oncologist about medication for bone strenethening since you have fractured. Of Course both Ca and high Doseof Vit D3 are strongly recommended. I am on Xgeva shot for bones.

    hugs

    New Flower

    The trouble is that what is available for bone strengthener I can't use due to my uveitis.  It was the first thing the specialist removed when I went to see him back in 2006.  I will certainly talk with my oncologist about it.  

    Hugs to you,

    Doris

     

  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #37
    SIROD said:

    Pixie Dust

    I intend to continue fighting but it would have been so wonderful to have continued on the same treatment instead of finding another.  It all the side effects that one must learn to live, adjust to all over again.

    Best to you,

    Doris

    Our Dear Doris ....

    I pray for relief ... successful treatment options .. as well as strength and health.  

     

    Vicki Sam

  • GlowMore
    GlowMore Member Posts: 789 Member
    #38
    VickiSam said:

    Our Dear Doris ....

    I pray for relief ... successful treatment options .. as well as strength and health.  

     

    Vicki Sam

    East Coast...

    Hey...so if your pix is the East Coast?   It must be Maine  :)    Maybe?     Sending Smiles for a better week and Hope for new med and relief from pain.     Love the WORD posts.......my best friend sent me a Button you hit and it shouts out WTF in many different voices in many different ways....  makes me laugh and laughter helps us....even in the middle of all this pain and fear..........hang in there East Coast Sister....

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