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rae3
@rae3

Posts: 13
Joined: Oct 06, 2016

Metastatic breast cancer: Anyone else?

Posted by @rae3, Oct 6, 2016

Hello…I am new to this site. I had BC originally in 1989 with lumpectomy, chemo and radiation. After 4 months of pains, thought to be muscular from lots of tennis, xrays revealed cracked vertebraes in the spine and led to MBC diagnosis, to the bones. I have been receiving xgeva and faslodex injections once a month since February 2015. One round of radiation in August to the hip eliminated that pain by reducing the tumor. Just wondering if there is anyone out there in a similar situation and how are you doing??

REPLY

@rae3

Hi Sistie…so good to hear from you…we certainly are following a very similar path. How did iBrance fail you??? I took one round of 21 days of iBrance but my counts dropped so low and have been slow to rise. I see my onc in August and don’t know what he plans to do next…continue with iBrance or try something else. Where do you live?? I am in Fort Myers, FL. Just lately I had 7 days of radiation on the tip of my nose to get rid of a basal cell carcinoma. They didn’t want to use the Mohs method as my counts were so low I was in danger of infection.
I forgot to ask how long my nose will remain bright red!!!!!
So glad your brain tumor is almost gone…and I’m glad to know you are there…pink sisters…

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While on Ibrance my cancer progressed as shown in my PET scans and my tumor markers went up (but my dr. doesn’t put much store in them). After the first two rounds at 125mg my WBC went way down as expected however they didn’t bounce back after my “off week.” My dose was lowered to 100mg–that’s when the bad PETs started. I proposed going on Neulasta to bring my counts up so I could go back to 125mg but my doctor wasn’t keen on that idea. I wonder if Ibrance might have worked if I could have taken the higher dose. I say Ibrance failed but deep down I always feel like I failed Ibrance. It’s the over-achiever school girl in me. I hope your poor nose gets better. It’s not like you can cover it with a scarf or a brooch. It’s just there in the middle of your face. We don’t need these additional insults on to of everything else.It must have been one heck of a tenacious basal cell to require that kind of treatment.
My next trial is I’m seeing a neuro surgeon on Tuesday because my T8 vertebra is gone–totally replaced with tumor which is growing into my spinal cord. Something needs to be done ASAP and I’m scared.
It’s good to meet you, Rae. Keep me/us up on what going on with you. I live in Atlanta, Ga by the way.

@rae3

Hi Sistie…so good to hear from you…we certainly are following a very similar path. How did iBrance fail you??? I took one round of 21 days of iBrance but my counts dropped so low and have been slow to rise. I see my onc in August and don’t know what he plans to do next…continue with iBrance or try something else. Where do you live?? I am in Fort Myers, FL. Just lately I had 7 days of radiation on the tip of my nose to get rid of a basal cell carcinoma. They didn’t want to use the Mohs method as my counts were so low I was in danger of infection.
I forgot to ask how long my nose will remain bright red!!!!!
So glad your brain tumor is almost gone…and I’m glad to know you are there…pink sisters…

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You are stronger then you think ! I will pray daily for you, put your thoughts to God so that you are no longer alone or scared.

@rae3

Hi Sistie…so good to hear from you…we certainly are following a very similar path. How did iBrance fail you??? I took one round of 21 days of iBrance but my counts dropped so low and have been slow to rise. I see my onc in August and don’t know what he plans to do next…continue with iBrance or try something else. Where do you live?? I am in Fort Myers, FL. Just lately I had 7 days of radiation on the tip of my nose to get rid of a basal cell carcinoma. They didn’t want to use the Mohs method as my counts were so low I was in danger of infection.
I forgot to ask how long my nose will remain bright red!!!!!
So glad your brain tumor is almost gone…and I’m glad to know you are there…pink sisters…

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Thank you. You’re very kind. When we get wrapped up in ourselves we forget who’s really in charge.

Hello, newbie here, looking to connect with others whose breast cancer has metastasized to both the liver and bones.
I was treated for Stage I in 2013, double lumpectomy, chemo, radiation and Herceptin. I was triple +.
Four years later, playing lots of tennis, i started having abdominal pain and swelling. Saw a GP, got sent for ultrasound, then CT, then bone scan. My liver has “innumerable” lesions and the bone scan showed many tumors, pretty much head to thigh. I am uninsured but the hospital is willing to work with me. No treatment plan in place yet , awaiting liver biopsy to confirm its the same cancer as before. Has anyone else been down this particular road? I’m seeing stats of 4–6 months survival with no treatment and up to 2-4 years with full chemo, herceptin, hormone blockers, etc..
Naturally, i am frightened and unsure what to do next. Any input would be so gratefully received.

Liked by lchavez

I was diagnosed with two different cancers in my left breast in April of 2013. I felt the cancer in my nipple and knew something was wrong. I decided to have bilateral mastectomies on July 15, 2013. The 4th day, my husband took me home and within a half hour had left to go golfing. I couldn’t even open a pill bottle! I should not have been surprised because he was never there when I was sick. I got lucky and didn’t have to have chemo or radiation. I didn’t think I would ever set foot in the Cancer Institute again. Low and behold, just 3-1/2 years later my back pain got so bad that I went to Urgent Care and from there to another doctor because they didn’t know what was wrong. I found out my back is pretty much full of cancer, the clavicle, ribs spine, pelvis and some in my femur. I wish someone would have told me to watch for back pain!! So that was February of this year. I have had two rounds of radiation and was hospitalized for 3 days in May to try to get my pain under control. This was the most horrendous pain I have ever had! I was almost screaming and sobbing at the same time. I hated that my son and Mom and Dad had to see me like that. After radiation, my pain was gone for 2 months. It came back and has steadily increased, even though my CT was good in October. It seems that my morphine and Flexeril aren’t doing anything for my pain now. I have been very depressed today. I go through this about every 3 weeks. I feel like I have nothing to live for. The world goes on around me and I sit in my apartment. I have heard many times, but what about your kids? I have the best kids in the world and they will live without me. I just don’t want to end up like a few friends who laid in bed dying while their family watched in terrible pain.

I am so sad reading your story. Is the pain in your back breast cancer that has spread or some other cancer type? I can’t offer anything but support and reverence for your strength and will. Perhaps a new or second pain drug might help? Morphine has never worked on my pain (oddly) but Dilaudid (not sure on that spelling) always works for me. Don’t know if you might be able to investigate alternative pain control. I don’t think it’s any consolation to you but reading your post today made me realize that I am blessed and need to quite worrying and whining about my breast cancer diagnosis because right now I am not in pain and as far as I know….cancer free and ‘holding’. Prayers from me tonight and hope that your pain will subside and that you will be able to find moments of happiness despite the horror you are going through with all of this. It’s all I have to give to you, but you are not alone because I will never forget your post and I am a better person for it. Your life has more meaning than you know.

@djankord1

I was diagnosed with two different cancers in my left breast in April of 2013. I felt the cancer in my nipple and knew something was wrong. I decided to have bilateral mastectomies on July 15, 2013. The 4th day, my husband took me home and within a half hour had left to go golfing. I couldn’t even open a pill bottle! I should not have been surprised because he was never there when I was sick. I got lucky and didn’t have to have chemo or radiation. I didn’t think I would ever set foot in the Cancer Institute again. Low and behold, just 3-1/2 years later my back pain got so bad that I went to Urgent Care and from there to another doctor because they didn’t know what was wrong. I found out my back is pretty much full of cancer, the clavicle, ribs spine, pelvis and some in my femur. I wish someone would have told me to watch for back pain!! So that was February of this year. I have had two rounds of radiation and was hospitalized for 3 days in May to try to get my pain under control. This was the most horrendous pain I have ever had! I was almost screaming and sobbing at the same time. I hated that my son and Mom and Dad had to see me like that. After radiation, my pain was gone for 2 months. It came back and has steadily increased, even though my CT was good in October. It seems that my morphine and Flexeril aren’t doing anything for my pain now. I have been very depressed today. I go through this about every 3 weeks. I feel like I have nothing to live for. The world goes on around me and I sit in my apartment. I have heard many times, but what about your kids? I have the best kids in the world and they will live without me. I just don’t want to end up like a few friends who laid in bed dying while their family watched in terrible pain.

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I know many Breast cancer survivors that have been living for 10 and 15 years with cancer all over their body it can be managed don’t give up you are at the right place being at mayo . There are some good private Facebook pages one is called behind the pink moon and another metivivor you should join them we get lots of support there .

@cindylb

I am so sad reading your story. Is the pain in your back breast cancer that has spread or some other cancer type? I can’t offer anything but support and reverence for your strength and will. Perhaps a new or second pain drug might help? Morphine has never worked on my pain (oddly) but Dilaudid (not sure on that spelling) always works for me. Don’t know if you might be able to investigate alternative pain control. I don’t think it’s any consolation to you but reading your post today made me realize that I am blessed and need to quite worrying and whining about my breast cancer diagnosis because right now I am not in pain and as far as I know….cancer free and ‘holding’. Prayers from me tonight and hope that your pain will subside and that you will be able to find moments of happiness despite the horror you are going through with all of this. It’s all I have to give to you, but you are not alone because I will never forget your post and I am a better person for it. Your life has more meaning than you know.

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Hugs to you both I am also a Survivor along with my 2 sisters and we are all doing well . Just take one day at a time

@djankord1

I was diagnosed with two different cancers in my left breast in April of 2013. I felt the cancer in my nipple and knew something was wrong. I decided to have bilateral mastectomies on July 15, 2013. The 4th day, my husband took me home and within a half hour had left to go golfing. I couldn’t even open a pill bottle! I should not have been surprised because he was never there when I was sick. I got lucky and didn’t have to have chemo or radiation. I didn’t think I would ever set foot in the Cancer Institute again. Low and behold, just 3-1/2 years later my back pain got so bad that I went to Urgent Care and from there to another doctor because they didn’t know what was wrong. I found out my back is pretty much full of cancer, the clavicle, ribs spine, pelvis and some in my femur. I wish someone would have told me to watch for back pain!! So that was February of this year. I have had two rounds of radiation and was hospitalized for 3 days in May to try to get my pain under control. This was the most horrendous pain I have ever had! I was almost screaming and sobbing at the same time. I hated that my son and Mom and Dad had to see me like that. After radiation, my pain was gone for 2 months. It came back and has steadily increased, even though my CT was good in October. It seems that my morphine and Flexeril aren’t doing anything for my pain now. I have been very depressed today. I go through this about every 3 weeks. I feel like I have nothing to live for. The world goes on around me and I sit in my apartment. I have heard many times, but what about your kids? I have the best kids in the world and they will live without me. I just don’t want to end up like a few friends who laid in bed dying while their family watched in terrible pain.

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Hi @djankord1
Cancer is insidious! Living with stage 4 or advanced cancer is a new reality that few know or understand.

I’d like to invite you to this discussion in the Cancer group where other members are talking honestly and openly about living with advanced cancer:
– Talking Frankly about Living with Advanced Cancer https://connect.mayoclinic.org/discussion/talking-frankly-about-living-with-advanced-cancer/

I hope you’ll join us. Have you had a palliative care consult?

I am new with this same cancer. How are you doing 1 year later ? Hope alls well.

@rae3

How true…retired moved to Florida and learned to play tennis. The muscle pains I was experiencing were really the return of cancer. I guess I am fortunate for now it is in the bones and not a major organ as yet. I see you have joined recently…is this a recent diagnosis for you?? How long have you been on this regimen?? Interesting that I get xgeva monthly and you every 3 months. I will have to ask my oncologist about that. Hope your next treatment works better. My oncologist tells me there are several other alternatives if need be. Hope the next one for you works better. Keep us updated…

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Do ;you go to Mayo Clinic in Arizona ?

@colleenyoung

Welcome @rae3. I’m glad you found us. I’m tagging fellow Connect members @wandering @barnum @silky59 and @saltis, all of whom have shared about having metastatic breast cancer. In the case of Silky, it is also bone metastases.

Rae, It must’ve been hard to believe that the cancer came back after 16 years. Soon after treatments one tends to think every ache and sniffle could be a sign that cancer has come back, but after 16 years, I bet this came as a shock. How are tolerating the injections?

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I have MBC for 7 yrs now. I am unsure what to expect. The DR just says I can go on for years. I take the shots that were just mentioned.

@colleenyoung

Welcome @rae3. I’m glad you found us. I’m tagging fellow Connect members @wandering @barnum @silky59 and @saltis, all of whom have shared about having metastatic breast cancer. In the case of Silky, it is also bone metastases.

Rae, It must’ve been hard to believe that the cancer came back after 16 years. Soon after treatments one tends to think every ache and sniffle could be a sign that cancer has come back, but after 16 years, I bet this came as a shock. How are tolerating the injections?

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What shots are you taking?
Trish

@colleenyoung

Welcome @rae3. I’m glad you found us. I’m tagging fellow Connect members @wandering @barnum @silky59 and @saltis, all of whom have shared about having metastatic breast cancer. In the case of Silky, it is also bone metastases.

Rae, It must’ve been hard to believe that the cancer came back after 16 years. Soon after treatments one tends to think every ache and sniffle could be a sign that cancer has come back, but after 16 years, I bet this came as a shock. How are tolerating the injections?

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I have been taking Egeva for several years. The doc put me on Fulvestrant six months ago. Thanks

@colleenyoung

Welcome @rae3. I’m glad you found us. I’m tagging fellow Connect members @wandering @barnum @silky59 and @saltis, all of whom have shared about having metastatic breast cancer. In the case of Silky, it is also bone metastases.

Rae, It must’ve been hard to believe that the cancer came back after 16 years. Soon after treatments one tends to think every ache and sniffle could be a sign that cancer has come back, but after 16 years, I bet this came as a shock. How are tolerating the injections?

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@194719731977, are you taking both Xgeva (denosumab) and Faslodex (fulvestrant) now? What side effects do you have to deal with?

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