If you are not Stage IV but have questions, you may post here
Comments
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Linda, good luck and I am hoping for benign results. Please let us know how it goes.
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I have a general question for the stage iv ladies. In response to an earlier post, one of the ladies on the board said I should change my profile to say stage iv so I would get more response. If my original diagnosis was stage ii that has metastisized, am I stage iv? I want to make sure my profile is correct but I also want to make sure no one would hesitate to respond to me because it isn't clear that I am fighting the battle too.
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Linda here's hoping your lump turns out to be something benign.....good luck!
Hi Susan, you are indeed stage IV if your breast cancer has metastisized to somewhere else.......that is the definition of being stage IV. Sorry you need to join our ranks.
Love n hugs. Chrissy
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Hi Susan.
I also updated my signature recently to show that I had been Stage III and am now Stage IV. I went into My Profile and added the later diagnosis. The system was a little cumbersome so i have left out heaps of other treatment details.
I hope it's clear enough for people now.
Cheers
Angela0 -
Chrissy....just gotta tell you how amazing this thread is. It must be one of the most valuable threads on a big scale. You're so kind and caring and im just super impressed by you: ) xoxoxo
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Given the charter of this thread, I thought folks might be interested in Coolbreeze(Ann)'s video in the My Last Days series.
It's a moving look at living with stage 4 breast cancer and touches on how it effects her and her family.
It answers some questions I didn't know I had before I watched the video.
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Thanks Megadotz for recommending the video, I just watched it and cried. It's a very moving story.
Blainejennifer, thank you so much for replying to me. I will be definetely bringing up my symptoms with my onc at my next appt (fingers are crossed that it the symptoms with go away by 2nd Jan) ! thanks again x
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Hi ChrissyB,
I created a separate post on the Stage IV board regarding Cisplatin because I couldn't find a lot of info via the search function, but I will also post it here. My friend was just diagnosed Stage IV after being diagnosed Stage III a year ago. She is starting Cisplatin (I think, she said cis-platinum) tomorrow and I was wondering if anyone had any info about side effects. She did not mention if she was getting it in combination with anything else, although she may not know.
Any advice about side effects, etc would be greatly appreciated.
Edited to add: *I couldn't find a lot of info.* Sheesh. I can't type.
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Hi Sweetbean sorry to hear about your friend. The SEs of Cisplatin are nausea, possible hair loss, low blood count, fatigue. There is also listed that it can cause kidney damage that can be reversed but it is suggested that enough fluid going through the system can help prevent this. Nausea can be controlled through anti nausea drugs but if vomiting occurs and she can't keep anything down then her doc needs to be notified ASAP. This doesn't happen often.
In general, the SEs are much the same as other chemos but it depends on the individual as to how severe they are. The SEs also have a cycle so she should feel okay at some point in the cycle.......again this will depend on the individual.
Hope this helps.
Love n hugs. Chrissy0 -
Hi Chrissy,
Thank you so much - yes, this was very helpful. When I googled side effects, it coughed up a long, scary list (of course, that's what Dr. Google is good at), but I knew I would get the real deal at BCO.
She did well through ACT, so I am hoping that she tolerates this one well, too. And that it kicks her cancer's ass!
Thanks!
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Does anyone get any swelling from their bone mets?
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Canadagirl I have bone mets but never get any swelling from them.
Love n hugs. Chrissy0 -
I have bone mets and bone marrow mets. The only time I get swelling is when my blood counts are down. HUgs, Mazy
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I am posting here as I am very worried for my mom. She has stage 4 BC. She has been on pertuzumab+herceptin+taxol since July. She has been doing quite well on this combo until Christmas day. The scans were becoming better and better.
But mid-December she started to vomit, have headaches and problems walking. They discoved brain mets (quite a few I think). They stopped everything and started Xeloda+tykerb right away. The thing is her general state is not good right now. She sleeps all the time, barely eats, seems confused.
Could she that sick from the medication itself? Or is it the brain mets?
Thanks so much for your help
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Is local/regional recurrence ever considered Stage IV? I had initial diagnosis July 2010, recurrence August 2011, recurrence September 2012, recurrence December 2012 (confirmed by biopsy January 2013.) PET scan in July 2012 was initially read as "hot spot" in one of my vertebrae, but MRI was negative. I am guessing another PET scan is going to be recommended before new treatment plan, so this whole comment may be completely moot, depending on that. I know that the usual definition of Stage IV is "with metastases" but I just don't know if new tumors in the axilla count. It's not in the nodes - they took all of those. In fact, I really don't know exactly what this tumor is considered...
I am getting pretty frustrated with having so many medical appointments - tired of spending all the "fun time" of my life sitting in waiting rooms instead of friends' kitchens over coffee or at Barnes & Noble finding new books or in some art class learning how to do new techniques and spending my savings on more art supplies. In fact, some days I am just not caring what the diagnosis or stage is - I am ready to throw caution to the winds, ditch all the appointments, and just paint and write. Sorry for the rant... am getting ready to spend the rest of my evening with my watercolors and having some fun!
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There is a thread called "Brain Mets Sisters" where you might be able to get an answer to your question more quickly and hear back from lots of others who have brain mets. The link is: http://community.breastcancer.org/topic_post?forum_id=8&id=777599&page=1
((hugs))
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Thanks canadagirl, I'll post there.
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Today is likely the day we get the results from my mom's bone biopsy. The onc's office has finally opened again after the holidays and she has already left a message practically begging him to call her back right away. As much as I want this long wait to be over, I am so scared of what he could say. I am incapable of concentrating this morning no matter how hard I try to focus and get lost in my work. (The downside of working from home!)
Calling in all good vibes and prayers!
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I have a question for all you kind stage IV ladies. I have osteopenia, but only on my spine so far. I have read that some think that "weak" bones are more prone to mets. My onc wants me to take prolia. He won't come out and say it, but I assume he is hoping to ward off bone mets.
Meanwhile I am trying to build up my bones, or at least conserve what bone mass I have, by exercising, taking calcium etc. I am not really keen to start the biphosphonates, and not convinced that they are all that useful for fracture protection anyway.
I am trying to get a sense of how many women with bone mets had weak bones prior and how many had normal bone mass. Would love to hear from anyone who can shed some light on this.
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Linda, to my knowledge, local/regional recurrence is not considered stage IV but just what it is, a recurrence. Here's hoping your scans come back with good news.
Canadagirl, keeping everything crossed that your moms path comes back negative.
Momine, my spine is osteopenic but so far I have no mets there. I also have a crush fracture that has not succumbed to mets. My mets attacked strong healthy bone to the point it needed to be pinned for it not to break.
Love n hugs all. Chrissy0 -
Chrissy, thanks for the feedback, but sorry about the pinning and fracture.
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Thinking of you Canadagirl. Was looking to see if you and your mum had any results yet. The waiting is the absolute worst. Hoping you have something by now.
Momine, I had normal bones and got mets to the spine. Went on Aredia for 18 mths and just stopped, can go back on later if needed. Bone mass still ok according to bone density test. I had no SEs and was happy to take whatever might help strengthen the bones and delay any new growths.
Moira
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Oh Moira, still no word from the oncologist! We have all been frozen with phone in hand waiting for a call since this morning. The waiting is terrible and gives you time to think up--and look up!--the absolute worst possible things! he has called her after-hours before so I am hoping she still gets a call today. It's not quite 5PM here yet so fingers are crossed for news...good news ideally!
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Call him, call him right now!!!!
Do they have no idea what it does to us to sit there and wait.
Yes, I know they are busy and have lots of other sick people that all want to be seen today as well, but you do not want another night to have to pass.
Really hoping you get word today.
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I was ready to grab the phone and call him myself for her! My mother isn't quite as pushy as I am
I'll work on her!
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Chrissy, thanks for the clarification. Not that those classification numbers mean all that much in some ways, but psychologically it is nice to think there isn't progression at this time. Counting my moments of grace today, and you are one of them!
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Moira, thanks for the info. I have two docs, one "believes" in zometa for prevention of bone mets, but won't give it to me because I am not osteoporotic and he doesn't think I am in danger of developing osteoporosis.
My other doc wants to put me on prolia, he says to prevent osteoporosis, but I think he wants to prevent bone mets and just won't tell me that.
I am seeing them both in a month or so and will discuss further then.
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I don't even know what to think, but my mom's bone biopsy was NEGATIVE!!!!!!!!!!!!!!!!!!!!!!!!!
The oncologist wants to see her on Thursday to "discuss what's next" according to his receptionist. I'm afraid to celebrate after almost 2 months of believing it was mets, especially when the orginal doctor said it was "definitely cancer"! If it was negative then why would he need to see her? Does there need to be more done with negative results on the bone biopsy?? I should be happy, but I'm scared. That initial doctor at the emergency room has really freaked me out and made me scared of being slapped in the face with bad news again.
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Canadagirl take that negative result and hold it in your heart.........pathology does not lie! That ER doc was guessing he did not and could not know for sure without testing and getting results. Perhap your moms new doc just wants to see her to reassure her that she is doing just fine.
Love n hugs. Chrissy0 -
I'm back with another question. Since my recurrence my oncologist decided that he would like to do scans every 3-4 months. Seems a little overkill to me but as long as we do scans once a year for a couple of years I'll be good with that. So, it had been a year since my last bone scan and when I went to see him in December I mentioned my should has been giving me fits. Then he told me that one of my liver tests was out of whack by a little so he wants to do a PET CT. My insurance company denied it and doc's office is still trying to get them to agree to pay for it. Now a few days ago I noticed swelling on the right side of my chest in the hollow area where the neck meets the clavicle. Read about swelling there and it is my supraclavicular lymph node.
My question is, IF they get the insurance company to pay for the PET CT, will they be able to see if anything is going on in that lymph node also? If not, which scan would be the best for seeing that? I, at the least, want a bone scan. But if this swollen node means something then I want to know that too.
Trying not to freak out. Can anyone answer my question? Thanks!
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