First good news!
For those who have been here for a bit, You know I am stage iv. Most of 2013, I was in disagreement with my longterm onc. I had run out of option time to start Hospice. I disagreed. In Dec 2013. I finally got 2nd opinion a Huntsman Cancer Center. He said I was over treated with chemo, which is not effective on bone mets. Undertreated w/hormone blockers. The chemo did work on skin tumors and liver lesions. Iwas on chemo over 2 1/2 years. 5 chemos and the.bone.mets kept growing the whole time. New Dr. did tumor markers which were over 500, said tumors were aggressive. Started me on Femara, too much muscle and bone pain, but I was determined to make it work, after 7 weeks he stopped it. Said we still had Aromason. I waited 5 weeks til muscle and bone pain was tolerable b4 starting it. Told him I wouldnt be abl to tell if it was Aromason or Femara if pain continues. Since, only s/e have bee dry mouth and hot flashes. Markers dropped from 500+ to 26 & 25 the last 2 months. So I am excited to be STABLE! The excitement dropped when he said he has seen Aromason be effective for 18 - 24 months for on patient. I smiled and reminded him I was on it already for 16 months. He said it slipped his mind that I came from The Huntsman! I came home, told my boys that I am stable and would maybe look for a nce 1 bdrm apt. My kids do not like the idea of me living alone. For 4 1/2 years I have been told, times up, dont count on Christmas...etc. Now it is a big mindset change that I could be here longer. It is also frustrating knowing, had I been on Femara or Aromasoon, the tumors most likely would not havengrown so fast and chances are.I would not have all the pain bcuz, the blockers would have slowed the growth b4 it was in every bone in my body with the exception of hands and feet. Cant change the damage already done, but can learn to live with what I have left. I realize at this point I am on my last option, as it continues the spread to stop, it is continuing my "HOPE" THAT i will still be here when they have the immune therapy approved for Stage IV Breast Cancer.
Comments
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sending prayers
sending prayers that you remain stable on this current regimen. Nothing you do changes what happened in the past and I congratulate you for not dwelling on it and instead moving forward and LIVING your life. NONE of us is guaranteed a tomorrow, we all just need to live in the now.
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AmazingPuffin2014 said:sending prayers
sending prayers that you remain stable on this current regimen. Nothing you do changes what happened in the past and I congratulate you for not dwelling on it and instead moving forward and LIVING your life. NONE of us is guaranteed a tomorrow, we all just need to live in the now.
Oh, Carol, this is all such good news.
I am a person who has a tremendous amount of difficulty letting go of what could have been, should have been, how it all might have turned out differently if only blah blah blah, so to say try to let it go is pretty hilarious coming from me. When I've succeeded, though, it's been such a relief.
I think you've probably honed the skill of letting go and you're probably fairly masterful at it.
Sending good thoughts and hopes for peace and energy and good times ahead.
xoxo
Victoria
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Great news, not just goodtufi000 said:Carol
How wonderful to dare to be positive again!!!!!!!! Your journey has been an inspiration in soooo many ways
Carol, I'm so happy the Aromosin is working and your outlook ahead is positive. I well remember your struggles with (as Chen would say) your previous NONcologists. With the tumor markers lower, is the pain more tolerable?
Suzanne
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I am so glad to hear your
I am so glad to hear your good news! It is wonderful to hear things are stable and things are looking up!
I learn so much from you and you are an inspiration!
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Carol, happy for your positive outlookcinnamonsmile said:I am so glad to hear your
I am so glad to hear your good news! It is wonderful to hear things are stable and things are looking up!
I learn so much from you and you are an inspiration!
carol,
It has been a tough ride for you. Happy that your maker are normal and stable. There is a bright future and new drugs ahead.
Big hug to you
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Carol, i am inspired by your spunk - and never give inNew Flower said:Carol, happy for your positive outlook
carol,
It has been a tough ride for you. Happy that your maker are normal and stable. There is a bright future and new drugs ahead.
Big hug to you
attitude ... its been a long and tough road for you dear Carol. Normal markers and stable, now that is news to celebrate.!! Doing my hap hap happy dance in honor of YOU.
Continued success, and better health I pray for you.
Vicki Sam
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Wonderful News
Camul, you are such an awesome lady. You have went through so much in the back years of your life and you are still able to read everybodys problems and give great advice. You have even been here for me, and now I want to be here for you. Congratulations on such a good report. It is so good to come on here and read some good news about our pink sisters instead of bad. I am so glad to hear the good news and certainly proud of you. Hope you are doing the Happy Dance with me. Stay postive and you are traveling the right direction.
HUGS, Pixie0 -
Fantastic!Pixie Dust said:Wonderful News
Camul, you are such an awesome lady. You have went through so much in the back years of your life and you are still able to read everybodys problems and give great advice. You have even been here for me, and now I want to be here for you. Congratulations on such a good report. It is so good to come on here and read some good news about our pink sisters instead of bad. I am so glad to hear the good news and certainly proud of you. Hope you are doing the Happy Dance with me. Stay postive and you are traveling the right direction.
HUGS, PixieWhat great great news, Carol. You are such a fighter and continue to amaze and inspire me. I am thrilled for you and will keep hoping that your good news just continues and continues.
Smiles!
Clementine
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What wonderful news!!
Carol,
Thank you for sharing your good news. I am so happy for you and I'm sure your boys are too. Love Surf
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Unfortunately, IT doesnt chg the pain,Double Whammy said:Great news, not just good
Carol, I'm so happy the Aromosin is working and your outlook ahead is positive. I well remember your struggles with (as Chen would say) your previous NONcologists. With the tumor markers lower, is the pain more tolerable?
Suzanne
However, as long as it is not growing, I would imagine it will not increase. Sometimes it is frustrating knowing had I been on this sooner, it most likely wouldnt be as advanced in the bones and less pain as it most likely wouldnt be in knees, elbows etc. I am not dwelling on it, but I do not hesitate to tell people in my local support to get another opinion when they ask why they arent on Tamoxefin or any hormone blockers when they are er, pr+. I think my dr did all he believed he could do for me, and my nurse adv. me from the time hospice was mentioned, then pushed to get one. I just felt loyal to my dr. Finally my light bulb went off saying get another opinion.
Now thaat the pain isnt increasing though, I am dealing better with the pain.0 -
First Good News
i haven't posted much, but I do read here everyday. I too am Stage IV with a bone met on my left sacrum. Reading your posts give me hope. When I first found out that my cancer had metastized, I thought I'd be gone in 18 to 24 months, but reading your story, gave me hope and encouragement. I've done 4 rounds of Taxotere (was supposed to do 6 but SE was making me too sick so my onco stopped it). I'm now on Herceptin, Letrozole and Zomata. Scheduled for abother PET this Friday. So far, the tumor in my Breast hasn't shrunk much (only 0.4 cm), so not sure whether surgery will be done anytime soon.
I am so glad you are stable. As a Stage IV, we all want NED, but stable is great news too! So happy you found a Onc who is not giving up. Just said a prayer for you.
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Hugs
I love when I sign on this site and the first thing I see is GOOD NEWS
Denise
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Thank You!Gm2873 said:First Good News
i haven't posted much, but I do read here everyday. I too am Stage IV with a bone met on my left sacrum. Reading your posts give me hope. When I first found out that my cancer had metastized, I thought I'd be gone in 18 to 24 months, but reading your story, gave me hope and encouragement. I've done 4 rounds of Taxotere (was supposed to do 6 but SE was making me too sick so my onco stopped it). I'm now on Herceptin, Letrozole and Zomata. Scheduled for abother PET this Friday. So far, the tumor in my Breast hasn't shrunk much (only 0.4 cm), so not sure whether surgery will be done anytime soon.
I am so glad you are stable. As a Stage IV, we all want NED, but stable is great news too! So happy you found a Onc who is not giving up. Just said a prayer for you.
I have been told 3-6 months at the onset, and always didnt thi k I would see the next holiday,bday, etc. B4 changing drs, I was off everything. I know it is only good for the amount of time the Aromison is effevtive... but I will take whatever time I can get!
I dont have many bones w/o tumors. Wish we could get the pain issue balanced.
Thank you for the prayers, I appre iate each and every one!.
Carol0 -
New treatment
The FDA just approved on Feb 3 Palbociclib (Ibrance) to be used along with Letrozole (Femara). My doctor just added the Palbociclib for me just waiting on insurance approval. She is real excited about the potential for stage 4. Has anyone taken this new med yet
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painfulcamul said:Thank You!
I have been told 3-6 months at the onset, and always didnt thi k I would see the next holiday,bday, etc. B4 changing drs, I was off everything. I know it is only good for the amount of time the Aromison is effevtive... but I will take whatever time I can get!
I dont have many bones w/o tumors. Wish we could get the pain issue balanced.
Thank you for the prayers, I appre iate each and every one!.
CarolThe world shrinks along with our options, but Carol You make it as huge as the universe. wish you comfort.
Sherry
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I do not qualify.duck1255 said:New treatment
The FDA just approved on Feb 3 Palbociclib (Ibrance) to be used along with Letrozole (Femara). My doctor just added the Palbociclib for me just waiting on insurance approval. She is real excited about the potential for stage 4. Has anyone taken this new med yet
It has been approved but only for those who have not had systemic treatment and I have been on 5 chemo's as a
well as an oral one, all systemic, and unfortunately, I couldnt tolerate the pain that I was experiencing with the Femara. I am still hoprfull that they come out with one that I can do. Chemo is no longer an option either after clotting issues.
Thank you for thinking of me.
Carol0
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