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??

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@colleenyoung

Welcome, @mjwhearts22. It is my understanding that metastasis to the skin can sometimes be treated, but not cured. Have you had any treatments like electrochemotherapy, special dressings or even antibiotics? These may be options depending on a variety of factors. Do you have pain?

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Hi there, I am very interested that you mentioned Electrochemotherapy. I have locally advanced breast cancer in the skin and have been trying to find out about electrochemotherapy and how successful it might be. I live in Australia and I have heard that Peter MaCallum Cancer Centre in Melbourne may offer that option. I would be really grateful for any information and / or experience you may have with it. Thanks 🙏

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@slebonfan

I was originally diagnosed with Stage 2 invasive ductal carcinoma in 2018. Had a masectomy with 28 lymph nodes removed, chemo and radiation. My chemo was not completed because I was allergic and my Oncologist said he was fine with it because I had enough treatments. I also did 35 days of radiation and was on tamoxifen for 4 years. During those 4 years I started having pain my my right thigh and hip. I was referred to PMR by my primary and then to several different PT's. I was also given steroid injections in my hip and groin and did pool therapy. The pain was just getting worse and nothing was helping. I was given gabapentin and muscle relaxers and no relief. I didn't want to take any opioids or narcotic pain relievers because I wanted them to figure out what was causing this pain. I went from walking 4 miles per day to having a cane and then having to crawl up my stairs. My primary sent me for a 2nd opinion and that Dr knew my Dr and did absolutely nothing but send me back to him. I kept asking for images or MRI or anything to look and see what it was and kept being told it was from my hip, there was a tiny spur. He actually told me he can't order an MRI on my thigh! Finally my PT sent a note and told him I should be sent to Orthopedics because there didn't seem to be any soft tissue problems. He VERY reluctantly sent me and they did an X-ray of my hip which went low enough to show the 4.9 cm lesion in my femur. I was sent for an MRI of my femur (the test I was told they couldn't do) I Saw my results on the portal and ended up waiting a week to talk to someone in Orthopedics because the Dr was on vacation and got tired of waiting so called my Oncologist. He looked at the MRI and asked me if I could get to Rochester the next morning for a PET scan. I was told to stay off my leg as much as possible because there was a pathological fracture in my femur. The results of the PET scan showed it was in my hips, sacrum, iliac crests, liver and cervical spine. I had surgery a week later to have a rod put in my femur and I'm on Kisqali, Letrozole and Xgeva now for the rest of what life I have.

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Oh geeez! I had a similar repeated dismissals when I lived in Fl. and kept saying what is this in my left arm pit for I think it was 2 years than finally in late 2018 into 3/27/2019 there was imaging ordered and a biopsy in 1/19. It was the same LBC that was in left breast in 2012.
which I had a double mastectomy for. A lot of the dismissals for imaging is due to insurance.
Anyway, if you have good insurance that should not have been the issue. An oncologist and Breast Cancer Center affiliated with a University Hospital is ideal. This way there is a team that reviews all your issues and not just one doctor . I only have one or two Bone bc tumors found this past month. We left Fl. during the pandemic. 2 cm and the other sm. unknown as they will not biopsy it as apparently any BBC is staged at 4 & they just treat it w/ Pharma and CTs? I've managed to be in otherwise good health after 3 BC surgeries etc. is a wonder, but I do avoid processed sugars and have always eaten more vegetarian than carnivore... I have been caregiving in dif. capacities to family during my whole BC journey and it's been incredibly stressful and so now I am trying to turn the focus on my own health for a change. So I hope you are too! Best for each day to you!

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@auntieoakley

I would talk to my doctor about this, compression fractures are painful if they happen. This kept me out of the saddle for a year, now I must be very careful (walking only) but I can occasionally ride if I can make the time. Since I refuse to take opioids except in extreme situations, I have been given lidocaine patches and those help a lot. Sadly this is a common product of MBC, my doctor says walking or swimming are the best things to keep my spine as healthy as possible. Swimming is out so walking it is. I also remember to be careful walking down stairs or hills as that is more impact. Thankfully we have a fabulous orthopedic clinic 60 miles away.
Are you having spine pain? Do you have lesions or loss of bone density?

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Great sharing. Love the horse talk. Know exactly what you mean. Started yoga in 2019. There are so many different types but results are worth it. Can do in home, online or with people Now doing Pilates reformer work on a machine. Amazing. Being open to different movements can help. Thx

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@leighhall

Hi Colleen.
Yes it targets the Pik3CA mutation. I started it Dec. 18 so I don’t know how long it will take for side effects. I think they are still recruiting patients for it. I take 3 100mg capsules twice a day, then a fulvestrant shot every 2 weeks.

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It is RLY-5836

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@colleenyoung

Hi @leighhall, that's amazing that the stage 1 clinical trial drug is not (yet) causing any side effects. Do you know the name of the drug or the clinical trial? I'd be interested in learning more. It sounds like it might be a targeted therapy for Pik3CA specific mutation. Is it?

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Hi Colleen.
Yes it targets the Pik3CA mutation. I started it Dec. 18 so I don’t know how long it will take for side effects. I think they are still recruiting patients for it. I take 3 100mg capsules twice a day, then a fulvestrant shot every 2 weeks.

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@leighhall

Hi! I have the same problem as you. I had mastectomy in 2014. No radiation or chemo, took tamoxifen about 3 years. It caused too many side affects at work. I started having problems 3 years ago. The doctor checked for heart problems, no checking for cancer even when I told him it didn’t feel like a heart problem. He knew I had breast cancer but never checked for that. Symptoms kept getting worse, went to a different doctor 4 months later & she ran a whole bunch of tests and found Mets to lungs , ribs, spine, hips. I was on Ibrance & Letrozole for over a year & a half until it quit working. They tested me & found out the cancer had a Pik3CA mutation. I am now in a stage 1 clinical trial of a drug that targets it. I have been on it about a month, no side effects yet. Hopefully it works. Only my close family members know about my diagnosis no one to really discuss things with. I don’t want my family to worry about it. Doing ok otherwise.

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Hi @leighhall, that's amazing that the stage 1 clinical trial drug is not (yet) causing any side effects. Do you know the name of the drug or the clinical trial? I'd be interested in learning more. It sounds like it might be a targeted therapy for Pik3CA specific mutation. Is it?

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@auntieoakley

I would talk to my doctor about this, compression fractures are painful if they happen. This kept me out of the saddle for a year, now I must be very careful (walking only) but I can occasionally ride if I can make the time. Since I refuse to take opioids except in extreme situations, I have been given lidocaine patches and those help a lot. Sadly this is a common product of MBC, my doctor says walking or swimming are the best things to keep my spine as healthy as possible. Swimming is out so walking it is. I also remember to be careful walking down stairs or hills as that is more impact. Thankfully we have a fabulous orthopedic clinic 60 miles away.
Are you having spine pain? Do you have lesions or loss of bone density?

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No, no spine pain but there's an intense pain on my left hip as I get up from a sitting position. Lesions all over my spine and hips. Dexa is scheduled in February so we'll know more about bone density then. In the meantime, I talked to my oncologist, as you suggested, today. She made a referral to an ortho-onco specialist. I'll try to post after my visit with her.
Thank you @auntieoakley and @tessspike for sharing your experiences < 3

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@eku

Hello @tessspike ,
could you update us after your visit, please? I am also having increased hip pain and my last scans said, something along the lines of, to expect a pathological fracture in the spine. I don't know what specialty to go to to talk about these. E.g. how to manage pain, what kind of exercises I can do to strengthen the relevant areas, or what kind of exercises/activities to avoid to prevent a fracture,... Kiddo was asking about going to bowling the other day and I had to tell him I probably cannot do it 🙁

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I would talk to my doctor about this, compression fractures are painful if they happen. This kept me out of the saddle for a year, now I must be very careful (walking only) but I can occasionally ride if I can make the time. Since I refuse to take opioids except in extreme situations, I have been given lidocaine patches and those help a lot. Sadly this is a common product of MBC, my doctor says walking or swimming are the best things to keep my spine as healthy as possible. Swimming is out so walking it is. I also remember to be careful walking down stairs or hills as that is more impact. Thankfully we have a fabulous orthopedic clinic 60 miles away.
Are you having spine pain? Do you have lesions or loss of bone density?

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Hi again! It seems finding the exactly appointed specialist can be tricky while living in a large metro area with a great choice of medical support! I know that is the reverse for so many so I am truly thankful for choices. The specialist yesterday is more focused on hips, and after several xrays he agrees with my oncology team that my biggest problem is the stenosis and bone spurs on my spine compressing nerves that were also highly aggravated by the radiation I did on my hip in late December! I do not have fractures, which is great news, so now he is urgently referring me to a spine doc with good onco experience to see about treatment. I'm open to surgery, PT, anything to get to snuggle grandbabies again and DRIVE! I am so sorry you are suffering and having such a struggle getting help. Blessings to you with prayers for a clear path to treatment for you, @eku!

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@tessspike

I am stage 4 with hip and femur mets, found 2 years ago. Pain developed in November and became so severe I was hospitalized. I simply had to go for opioids, but have gotten much relief for now. The docs think much of it stems from back spinal stenosis and spurs, so I am headed to an ortho/onco specialist today for a treatment plan. My onco believes the Kisqali and fulvestrant are still working. Life is going on and God is in in control. I’m living each day vs projecting a future that I don’t know!

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Hello @tessspike ,
could you update us after your visit, please? I am also having increased hip pain and my last scans said, something along the lines of, to expect a pathological fracture in the spine. I don't know what specialty to go to to talk about these. E.g. how to manage pain, what kind of exercises I can do to strengthen the relevant areas, or what kind of exercises/activities to avoid to prevent a fracture,... Kiddo was asking about going to bowling the other day and I had to tell him I probably cannot do it 🙁

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