Bone Mets Thread
Comments
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z, I knew you would know! Thank you so much!!! I am still on Faslodex but stopped Ibrance in Dec because I was supposed to get radiation and they didn’t want me on both at the same time. But there were several things that push my rads to start on Feb 1st so have been off. My onco came by tonight and said they are switching my radiation to the spine. I asked her to go back on Ibrance since it didn’t fail (scans were great in nov. Told her I don’t care if it knocks me down. She said we will see after MRI tomorrow
JUst crazy to go from everything shrinking to new lesions in just two months.
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Hello everyone. I really do not know what I am doing here, I guess I just need to talk about things, My mother was diagnosed with breast cancer five years ago. By the time she had went to the doctors and the tumor was already removed with apart of her breast (chemo,radiation are doneand she was given armidex tab.For the past few years we had thought that she had beat it. Well about a 2 weeks ago she had told her doctor several times that her right eye had no clear vision. The doctors told her everything was fine, her eye will be fine with new glasses but no improvement so we did many tests to clarify. A doctor had ran a MRI and found out the cancer had spread to her bones (one of it in the skull press on the optic nerve and prevent full vision to right eye)its also spread to ribs, femur , few vertebra, pelvic. Our dr prescriped zomita once per month for 6 months and aromasine instead of armidex and also radiation............ i need to know this type can spread to more than bone.?
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margarita, understand how fed up you gat with infusions. I'm on no. 21 Kadcyla this week, though last time my Onc told me of someone on no.67
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Lanka. I had Zometa at first. Then had heart FEV1 tests which showed lower readings. I then changed to Zxjeva. Have regular heart checks. I didn't feel any adverse reaction to Zometa, and feel fine with zxjeva too, so trusting my Onc, Also on trastuzumab 3 weekly. I can't say which was the better treatment. My liver and bone mets all stable 18 months later
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Marlene 89, a lot of the ladies on this site have experienced this. I had breast cancer 11 years ago, then 18 months ago routine bloods showed tumour markers raised, leading to MRI and other tests which showed cancer had metastasised to my femur and liver. I had never known this could happen. I have also been treated with Zometa, kadclya, zxvega. I am sure other ladies with more knowledge will help you here on,this site. So sorry for your Mum and family, it remember there are many treatments, so never give up. Not sure how old your Mum is, but we have all ages here. Welcome to our group. We are very helpful and good at sending good thoughts across the world. X
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Marlene, if it's MBC and the cancer is responding to the treatment, then if should have benefit in all areas (assuming the receptor type hasn't changed). Some patients opt for a biopsy once they reached stage 4 to help inform treatment plans
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Minnie, 67 Kadcyla cycles?! That's amazing. While I do get fed up with infusions every third week, I'd be pretty darn happy to get to my 67th infusion! At least the sides effects aren't too bad. At least I've been fortunate this far.
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MargaritaM I totally agree. I want to be there with 67 cycles
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Another tip for Zometa infusions, is stay hydrated! Drink lots of water the day before, the day of and the day after. I've found hydration to be key for me in keeping SEs at bay.
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zometa made me have flu like symptoms for 3-4 days. Switched to the xygeva and have had no issues with it. Everyone is different
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Thank you alot Dears but can i ask you about something : is ultrasound so good for prognosis of any tumor in internal organs or its may be not accurate?
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Marlene -
Ultrasound is not used as a diagnostic imaging technique for cancer, at least for monitoring metastatic cancer. It allows you to get a good look at one thing, like a particular tumor you want to biospy. It doesn't provide a good 3D structured image with the tumors oriented in space such that you can compare the results with future scans.
>Z<
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I haven't been on for a while and am hopelessly behind with all your news. Welcome to all the newbies. You'll find all the support and information you need from these wonderful ladies.
Marlene89 my MBC is in my bones and I've been told that as long as the hormonal treatment I'm on (Letrozole and Ibrance) is controlling it, which it has been so far, the bones tend to contain the cancer from spreading more than visceral mets do (lungs, liver or brain). I'm sorry that your Mum's skull met is pressing on her optic nerve. Take heart from the knowledge that treatment for bone mets tends to be slow and as long as she's on the right treatment keep your faith that the tumours will shrink given time. I'm sorry I can't give you any info on what happens to the optic nerve once it's been compromised, though. That's a question for her MO. I'm not an expert and I tend to be a bit of a PollyAnna but, as long as you're assured the treatment is the right one and your Mum is being well looked after, it's just patience and time you need.
Maire....I'm SO THRILLED to know your mets are stable. I just love that word. I'm so happy for you!
In case anyone is interested, I've begun a blog to chronicle my MBC story. The reason is I don't want this experience to count for nothing. I need to think there's a purpose to this so I'm sharing my story anonymously but with all of the details so that, hopefully, someone out there in cyberspace might benefit from it. I also want to dispel the many myths surrounding MBC.....you know the ones..."Think positive....you can fight this....when does your treatment finish? You will soon be in remission" etc etc. People need to know that we will never be finished with treatment and that the key word for us is research and that that's where money needs to go. We need to have the hope that we can buy time until the next new treatment comes along. The blog is not a sob story. Far from it, and I'm hoping to keep it lighthearted but to make my point that MBC is called the hidden breast cancer for a reason and that too few people understand it. I'd love it if you would share it widely if you think that's appropriate. The stats in it are Australian but American stats are the same.
It's called Breast Cancer and My Life
www.positivetrials.blogspot.com.au is the link.
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thank you alot zarovka as i was so worry about the accuracy of the ultrasound results ( the result is normal organs ) now i think its preferable to do CT to be confirmed
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Many Thanks Leapfrog really you support me with your words (its all about faith).
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Leapfrog, thank you for sharing your blog with us, and thank you for starting a blog. I think it is a noble enterprise, hopefully it will encourage doctors and patients to be more vigilant to possible bone mets, and of course, give courage to others.
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Leapfrog, I just read your blog and it is brilliant. Your experiences have such value to all women. I was always getting mammo & ultrasounds on tome. 6 months after my last mammo I had stage 3 ILC. Only a great ob-gyn saved me from what you experienced. Today I listened to friend, whose husband was struggling with back pain for 2 years after an accident, tell me he has metastes to bone. Why does this happen? Too few doctors, insurance not allowing tests because of cost. What you describe has put a face on the problem of misdiagnosis. You show us that we need to be our own advocate.
You explained MBC so well I want to salute you. We are brave to listen to all the platitudes you describe. It makes me proud that we do what we can to answer these well meaning comments
On a lighter note but one that brought me to tears before I read your experience. The descrition of how you quietly went about running the household and the frustration of being unable to continue hit the nail on the head for me. I was crying because n one here seemed to notice that things are going awry. They make a bowl of cereal for dinner. No one thinks to ask me if Id like anything. The house is messy..ok so I am a bit of a clean freak but no one cared when the laundry was done or meals were prepared. Yes I’m still a bit annoyed but you made me laugh at myself. Thank you.
You sure can write. A wonderful blog. Maire0 -
leapfrog I just read your blog, it’s excellent.
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Marlene89....I'm glad I could help.
Amarantha, Maire, Laka....thank you so much for taking the time to read my blog and, Maire, your encouraging words have given me confidence in my ability to get across what it is we need people to understand. It's so important to me that I can turn this horrible experience into something worthwhile that will benefit others. I believe everything has a purpose and I do love writing so that will be my humble contribution to our cause. I'm so sorry, though, that you were so alone in your struggle. It's a lonely, isolating experience that we all go through. I'm so fortunate to have a son like mine. However, I had struggled on for a large number of years (it's all a blur to me now and I really can't remember how many). While my husband and son sat and watched TV after dinner I would somehow manage to clean up the kitchen, having cooked for them without any appreciation from them. Thankfully, my son did eventually see what was happening and I'm grateful that he did and that he had the grace to apologise for not coming to my rescue sooner. Maire, they should be looking after you. Perhaps if you showed them my blog if they haven't come to their senses yet?
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hi friends, this may already have been noted above (I’m very behind) but Patty is not doing well. A friend of hers has been updating on the patty thread.
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Jen. Patty has been posting lately so I thought she was doing better. Please convey my wishes that it turns around for her!
I hate BC
Babs
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Can anyone specifically describe the difference in bone pain from your tumors compared to joint pain from AI meds. I'm wondering if my horrible hip pain could actually be another bone met instead of a side effect from the letrozole/Ibrance therapy
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that hip pain also could be the Ibrance working. My hip hurt so badly the first 6 months, but then it was dead and now the tumor is not active (no uptake in scans, only healing
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CloudNine....I find that pain from Ibrance (and Letrozole) is worse during the 3 weeks I'm taking Ibrance than it is during the break. I have a two week break, though, due to neutropenia. I also find that the pain is only in my joints and mainly when I stand up from sitting down until I get moving. Once I get my body moving, the pain decreases. Mets pain is constant, intense, sometimes just a nagging ache but in the early days before treatment it was sharp and very very intense and nothing relieved it. Constant is the key word, at least it was for me.
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Hi can someone share the link or give the name to Patty's thread please? I can't find it in the Active Topics.
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cloudnine I got fever after my first Zometa treatment. It has been 2 days and I still have it. How long your lasted?
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After the mo visit today I am taking a one week break from Tykerb. I’ll start again next week. She said some of the mets are clearing so she’s not worried. This started with the Herceptin. Don’t tell my family but I overreact........ to all meds. Fever this week, rashes, creepy crawly itchy skin all over, low bp. Benedryl doesn’t stop it. Sooo
Hi CloudNine. My bone pain in mets area is constant achy like Leapfrogs. Faslodex & femara really set arthritis off. But I had it before. Moving helps plus one Advil and a warm shower in the morning.its taken me 9 months to figure some of this out. And I’m still not absolutelysure.
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I'm being referred back to Radiotherapy for possibly more sessions to help with the leg pain? The pain may come from the hip, but def the pain is my leg. Oncologist says it is muscles not working . Anyone had this
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Wanted to share a great day. We took our granddaughters to their first Broadway show today. My DIL wouldn’t let us take them by ourselves ( we’ve never been alone with them). But
it was still a great day and a wonderful memory for the girls to have with us. Now I’m exhausted and laying in bed. So worth it!Babs
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Grandkids are so great!! Funny how all DILs are different, all of mine love it when we take the kiddos!! I am enjoying the days with them - lots of happy memories!
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