Metastatic breast cancer: Anyone else?

Posted by rae3 @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??

@colleenyoung

Hi @rae3 @saltis and @wandering. Just checking in to see how you are all doing. How will you be celebrating the holidays this year?

Jump to this post

Hi Colleen…I had a fine holiday as my 2 sisters live nearby and although our kids  visited this Fall, we had nieces and nephews visiting this month.I am receiving xgeva and Faslodex hormone injections once a month…two years now.   Wondering if anyone else on this regimen dyes their hair.     I used to color mine blond but my oncologist said probably not a good idea…although he really didn’t know for sure how doing so would affect my hair.   Anyone out there with that experience???

REPLY
@colleenyoung

Hi @rae3 @saltis and @wandering. Just checking in to see how you are all doing. How will you be celebrating the holidays this year?

Jump to this post

I am getting a faslodex injection monthly (since June 2016) and xgeva every three months. I do not dye my hair and never have. It’s somewhat gray and brown. I am outside Phoenix so if you are in my area let me know. Not many of us have mets but would like to connect with others who do to share information. PS: My tumor markers have gone down with the faslodex (or maybe for some other reason) – this month at 71.1, which is down 25 since last month. I am hopeful, based on this, that I may survive a bit longer.

REPLY
@wandering

Thanks for checking in. I am doing OK. Had the stomach flu (while on vacation in Houston). Graciously passed it on to my husband. Have a doctor’s appointment January 4 so every month I get stressed waiting on my “numbers” (CA27-29 – tumor markers). My birthday is Christmas Day (a Jewish child born in a Catholic hospital on Christmas Day – ugh). Will be 72 (cannot believe that). Anyway, the worst part of that is no place to eat out (except Denny’s which I cannot do – not trashing Denny’s but not very elegant for a birthday celebration). Wishing everyone a happy holiday and praying for better health for my fellow partners. Breast cancer has become an epidemic which needs to be cured-pink shirts notwithstanding.

Jump to this post

Happy birthday, Colleen. We will celebrate by going out to dinner – hope you have fun too!!

REPLY
@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?

Jump to this post

I was rereading some posts and came acros this one from you. I contacted the Metastatic Breast Cancer Association in New York when I was looking for a new oncologist in Arizona. They got me in contact with several women in my area who were very helpful. You might give them a call and let them know where you are and that you are looking to find others with MBC. They are an all volunteer organization so you will probably need to leave a voicemail but they are very good about returning calls.

REPLY
@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?

Jump to this post

Thank you for your message. I live in Stockholm- Sweden & eventhough calling USA is absolut no problem, but I receive all my treatments & medication here. I just wanted to know and learn of other patients experiences & reaction. Thanks again.

REPLY
@wandering

Rae3: welcome to our group. I suppose not where you wanted to be after 16 years but —. Anyway, I too am getting xgeva shots (every three months) and faslodex every month. My tumor markers are on the rise so my dr is looking into something else. Have an appointment next month so we should have a plan after that. Keep in touch and keep that good attitude.

Jump to this post

Wandering…wondering if you got to Arizona this season???? How are you doing?? I have been on a timed release oxycontin 20 mg. for pain. Are you taking any pain meds???? My latest annual mammo in February indicated new calcifications in the original breast and recommended a biopsy or follow-up mammo in 3 months. My onc recommended waiting the 3 months. Not sure what that will mean.

REPLY
@wandering

Rae3: welcome to our group. I suppose not where you wanted to be after 16 years but —. Anyway, I too am getting xgeva shots (every three months) and faslodex every month. My tumor markers are on the rise so my dr is looking into something else. Have an appointment next month so we should have a plan after that. Keep in touch and keep that good attitude.

Jump to this post

I’m not taking any pain meds – two Advil a day and not sure I need them. I really feel quite well. I have lots of stress in my life right now not directly related to the MBC. My 96 year old mother needs to move first of April so I’ll be heading out to help with that. The good news is I have rented an AirBnB place most of the time I’m gone so I can have a little down time while there. We are in Arizona til May. I chose a new oncologist this winter and am happy with him so far. My deal with my oncologist in Montana (summer place) is I will not change anything unless he approves. My new Arizona oncologist is OK with that so that’s our deal. My tumor marker is heading the right direction so I doubt we will change anything unless that goes up. I was on Oxy at first (while in the hospital and for about two months). Didn’t like how they made me feel and I could not drink wine while taking them so I got off of them. My oncologist told me it would only take a couple days to find out if that was a good move which it was. Best wishes – stay positive and spend your time with positive people not people who relate negative stories about people they know who had cancer and died – ugh.

REPLY

I also had a lumpectomy in 1989, followed by six weeks of radiation. Then in 2000, I had a mastectomy, followed by six months of chemo. I continued to go to my oncologist for follow-up visits every 3 months, then every 6 months, and then once a year. In December 2011, a blood test taken at one of these follow-up visits showed that my tumor markers had elevated, but that alone is not enough to say whether or not a tumor is present. So my onc had me do two more blood test (one a month later, and one two months later), and the TM continued to elevate. So she had me get a bone scan, a PET/CT scan, and a biopsy. After all of this, I was diagnosed with mbc, with mets to my sternum and one right rib, and started on the same treatment you are on in July 2012. It has been almost 5 years now since I’ve been on Xgeva and Faslodex. No one would ever know that I’m being treated for metastatic bc unless I tell them because the treatments have not interfered with my daily activities. I wish you well as you continue your treatment.

REPLY
@marbar369

I also had a lumpectomy in 1989, followed by six weeks of radiation. Then in 2000, I had a mastectomy, followed by six months of chemo. I continued to go to my oncologist for follow-up visits every 3 months, then every 6 months, and then once a year. In December 2011, a blood test taken at one of these follow-up visits showed that my tumor markers had elevated, but that alone is not enough to say whether or not a tumor is present. So my onc had me do two more blood test (one a month later, and one two months later), and the TM continued to elevate. So she had me get a bone scan, a PET/CT scan, and a biopsy. After all of this, I was diagnosed with mbc, with mets to my sternum and one right rib, and started on the same treatment you are on in July 2012. It has been almost 5 years now since I’ve been on Xgeva and Faslodex. No one would ever know that I’m being treated for metastatic bc unless I tell them because the treatments have not interfered with my daily activities. I wish you well as you continue your treatment.

Jump to this post

Thank you so much for your post. Just yesterday I was surfing the internet to see how long Faslodex was being administered before it stopped working. I have been on Faslodex about 10 months. I think it’s working well for me also. When I started on Faslodex, my tumor marker was 225, now it’s 56 and has been in that range for 3 months. I really don’t have any side effects. I too have no outward indications of having metastatic breast cancer. If I do something physical (rarely happens, yea) and I get tired, I just sit down. I too am on Xgeva – started monthly injections in September 2013 and now have a shot every 3 months. Big day when I have the Xgeva and Faslodex in the same day. Since September 2013 (when first diagnosed with mbc), I have had 3 bone scans and a PET scan. The bone scans are showing substantial improvement – which I think is a result of the xgeva. I love my oncologist. I really think he knows what he is doing. Best wishes to you. Really excited to read your post.

REPLY

Hi, I was diagnosed with breast cancer in May of 2013 and had a bilateral mastectomy done. I did not have to have chemo or radiation because my lymph nodes were clear. In February of this year, my back began to ache and got worse and worse. After x-rays, a CT scan, a MRI, a bone biopsy and a PET scan, I was told that my breast cancer metastasized to my spine, ribs, pelvis and collar bone. I had five days of radiation to the T11 area because I had a compression fracture in that area. I was taking oxycodone and ibuprofen for my pain, but the pain worsened and the doctor put me on morphine with oxycodone for breakthrough pain. I started letrizole and Ibrance on April 22nd. My pain continued to get worse and I ended up in the emergency room on May 5th. Another MRI showed the cancer spreading quickly in my pelvis. My morphine dose was raised and now I also take Flexeril and ibuprofen with it. My son feels strongly that I go to Colorado and see a physician who would put me on CBD. Has anyone else tried this marijuana oil for their cancer?
Deb

Liked by rae3

REPLY

I will be interested in the replies. I live in Florida and we are supposed to be able to have marijuana prescribed but it isn’t happening!!!

REPLY

Welcome to Connect, @djankord1.
We have several people who have discussed the use of medical marijuana for pain – not specifically cancer-related pain however. You can review these discussions in the Chronic Pain group here:

– Marijuana has no effect http://mayocl.in/2q2vVT3
– Dosage for medical marijuana versus hydrocodone http://mayocl.in/2kp0ZJx
– Chronic pain and medical marijuana http://mayocl.in/2c2i9Hx

Additionally here’s further information from Mayo Clinic http://mayocl.in/2c3X2cz and National Cancer Institute http://bit.ly/2dltUxK.
I hope this information and talking with other members will help you decision-making and get you some pain relief.

REPLY
@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?

Jump to this post

Hi @wandering

Where are you in AZ? I’m glad n north Scottsdale.

REPLY

Hi Rae: we’re almost twins. I’m new to this site too. My BC came back after 16 years and like you I was active and all my symptoms were thought to be soft tissue injuries from running and lifting weights. I endured a lot of useless painful physical therapy until I got a weird pain in my ribs. I’ve been on just about all the hormonals, including Faslodex, none of which worked for very long but here I am alive after six years. I too have been on Xgeva the whole time and I’m about to start Affinitor and Anastrozole after Ibrance failed me. Anastrozole was actually the first hormonal I took and it worked well until it didn’t. My onc is trying to mix things up to delay my having to go on chemo as long as possible. Until last summer my tumors were confined to bone–lots of bones–then I got a tumor in the brain. I thought it was curtains but I had radiation “surgery” and it’s almost gone. Just wanted to say “hi” and you’re not alone.

REPLY

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…

REPLY
Please login or register to post a reply.