If you are not Stage IV but have questions, you may post here
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Hi Vol4life and welcome.........this is the thread to ask your questions so definitely in the right place.
I know some ladies who have been dx stage 3 and haven't moved to stage IV after ten years and counting. It is possible to live to the end of your days and not go further than you are. The problem with this disease is, that it is so unpredictable and even the best of docs cannot in all honesty pick the 30% of women who will progress to stage IV and that covers all early stages not just 3.
I understand how you want to control your life, ditto here, but I have learned over the last eleven years that the best way is to just live a day at a time and deal with what ever happens that day. The rest of the time live life to the fullest and enjoy every moment, that way you will hav no regrets should you ever progress further.
Love n hugs. Chrissy
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You must be one of God's angles...You answered so quick...didn't see that coming, .i'm so very sad, I'm not "going to kill myself" ( can't spell suicide)....but I don't have a strong will to survive...and people telling me all kinds of stuff, and I really don't want to hear it, I just want to be done with it... they chopped my breasts off, now, I want to be done...I don't want to go to the Dr. every week for the next 5 years.....I'm really okay with the death thing. I'm not okay with the Pain, everyday, going through the next best treatment thing.
I live in TN...and they have cracked down on pain pills (yep, my cancer has really good timing....I have to beg for pain meds because of all the punk pill additics)....I'm sure by now you are sorry you connected with me. I"ve read about you in this forum....Dang
You are an amazing woman! And not to take anything away from you, but there are a LOT of amazing women here (did I mention that I went from "it's nothing to stage 3, 5 cm, DMx) in a matter of 3 months....so I'm a bit shell shocked....The reason I bring all this to the table is that there is one thing I do know, cancer brings you to your knees, no matter what your dx....I don't trust...okay...good night, morning. why do I feel like I'm always such a bother to people...
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Bol cancer brings all of us to our knees, but there are moments that you get up and are glad you are here. From what you post, it may be a good idea to talk to your doctor today about an antidepressant, it will take the edge off a bit.
You might also want to call a breast cancer hotline as well. It's a tough fight, filled with twists and turns and while we all don't know how it will end. I'm going down swinging!
❤️❤️❤️❤️❤️
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Vol4life, here is one stage iii post for 10 year survivors. You may want to start there for inspiration and can ask your questions to others who I'm sure share your same concerns.
https://community.breastcancer.org/forum/67/topic/...
I agree with those who suggest an antidepressant. I suffered from high anxiety after diagnosis and antianxiety meds was a life saver for me. Now I'm in the middle of year five dealing with stage iv from the get-go and you might be surprised at all the living I've packed into my life since then! There are many of us who learn to live above the diagnosis while still dealing with bc daily.
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THX Tomboy!
"...but I would be very wary of telling the docs. In my experience, then they may become overly concerned about it, and deny them andy more."
You understand my concern perfectly!|
Wont go to pain mgmnt. because he is afraid they will offer him ' something else' and take away the pain meds. hmmmm....what is that a sign of ?Nerve pain HURTS. His pain is VERY real. Pls dont get me wrong, but I have seen, with an increase in gabapentin and amitrypitaline(sp) his pain has lessened a lot and he has said so himself..this is straight from the horses mouth. I dont think he has a clue how he ' really' feels because he is at the point where he doesnt go long enough without an oxy to know.
I may not have lost him to cancer. I sure as he** dont want to lose him to opioids. That whole situation really sucks. I feel he might have a better QOL off them ( doesnt drive right now because he is on so much and would like to for example) but he is afraid his life would get worrse ( withdrawal, pain...)
The thing is, he's not in contol...the pills are. (but I knew what you meant)Thx
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Vol the beginning of the DX is really hard to get our head around no matter what the stage. We all fear the pain that goes with cancer and in order to be able to carry on with life we need good pain control. If your doc is unwilling to help with that, ask to be referred to a pain clinic.
I don't think it matters where you live as the governments everywhere are cracking down on prescribing pain meds. They do it here as well so any narcotic has to be given an authorisation from the health department or the prescription will not be filled.
Whether you choose further treatment or not that is completely up to you but before you make that decision I would talk to a counciller. I would also ask your doc for an anti depressant to help you through........you don't have to be on it forever but it would be a good idea for now.
I'm never sorry when I connect with someone, I think it a privelage.
Love n hugs. Chrissy
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purple--I am not on as many meds as your dh, but I take 20mg oxy twice a day. I have had to increase it from 15mg two years ago. I completely understand your husbands fears. If I am an hour late taking my meds, I start to get really sleepy. I yawn a million times. The longer I go, the more I feel like I have been run over by a truck! One time I had trouble breathing. Last October I tried to cut back to 15mg again because I couldn't really tell what my level of pain was. That didn't work. I had to take bunch of break thru meds and I was still in pain. I think that I am dependent on the oxy, but I also know that I need it. I had a root canal last yr and I had to drive an hour away. The dr was shocked that I drove after taking my meds...? I don't know why. It doesn't make me sleepy at all. It's if I don't take it that I will sleep...maybe I'm backwards. I will not say anything to my drs about my pain meds...I already made that mistake with Ativan! I have no answers. I do know that he would have to titrate down over a long period of time. My grandmother had to and her qol improved tremendously. Best of luck.
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Hello,
Ive been experiencing some weird pains in what feels like a muscle in one of my arms and now having tingling and numbing further down the arm and into my fingers, Ive pretty much convinced myself its a reoccurence. I havent been do my MO yet, I seem to freeze emotionally and put things off when Im feeling so scared, I have been on Tamoxifan for more than two years now. If it does turn out to be mets is there any other medications that can help?
Lisette
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lisette perhaps it could be a pinched nerve. That can feel like that too. Do you have any neck issues? Always a good idea to check with MO, but there are other possible reasons that might also be checked out
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Hi Lisette, your tingling certainly can be because of a pinched nerve and that nerve can be located in either your neck, shoulder or elbow. You need to let you doc know as an impinged nerve that is not treated can lead to nerve damage so it's important that you get it checked.
I know we all let our minds run to mets anytime we have a pain or something bothering us but in reality, most of those things are caused through very normal things that can happen in our bodies and not the return of BC.
Love n hugs. Chrissy
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Hi kayb, the line of treatment is usually decided by the doc but some docs can and do get first and second line treatments approved for late stage IV if their arguments for it are strong enough.
Personally I have no experience with this but I do know of some ladies here in Australia who have used the palbociclib after trying other chemos.
I wish good luck to your friend in her endeavours for further treatment.
Love n hugs. Chrissy
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Kayb,
I participated in a Palbociclib feasibility trial (now called Ibrance on the market) for early stage patients. (I left the week it was approved due to my low counts and extreme fatigue.) I read as much as I can about the drug. There is a great thread here with many women on the approved drug who share their experiences and advice on dealing with insurance... IMHO, I think the drug would be an option if her counts are not too low to start. It is approved for Stage IV use with Femara, but some have gotten their insurance to cover its use with Faslodex, I believe. I took it with Tamoxifen on the trial. (The cancer should be hormone positive)
Topic: Ibrance 2015 (Pablociclib)
https://community.breastcancer.org/forum/8/topic/8...
Best
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Hi, I'm new to discussion boards of any kind except Facebook, and really not sure if I'm in the right place. I was diagnosed 5/05/14 with stage III triple negative metastatic breast cancer. I was 30 at the time. I've since tested positive to BRCA 1 gene. I have undergone chemo, bilatetal mastectomy and reconstruction, radiation and hysterectomy. I was exceptionally blessed to have a complete pathological response to chemo. Though usually really positive lately I'm feeling overcome with the fear of recurrence/spread. Every pain and ache and I'm petrified. Does anyone have any tips dealing with these feelings?
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Jek. Feel free to join us on "why was I feeling stringer During treatment than I am now". We discuss a lot of this fear and encourage each other. My doctor cousin keeps reminding me that BC is for the most part a chronic disease
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Welcome Jek, we second what Chloesmom says. You aren't alone - everyone here really gets it!
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Jek... Welcome to BCO. I think you'll find tremendous support here! As far as your specific question, what I was told at UCLA that made so much sense is... you give any new ache or pain 3 weeks, and if it doesn't resolve within that time, you get it checked out. That way, you have an actual game plan to deal with a new pain, and it really helps because most do seem to resolve within 2 to 3 weeks. It may also help to remember that you had aches & pains prior to your bc dx, and will continue to have things come up that are totally unrelated to bc. And changing the scene, even for a day or a weekend, always seems to help my mindset. Just having new experiences and being around folks who don't know I had or have bc totally puts it on the back burner for me.
You might also want to click on "All Topics" (upper right), then scroll down to the TNBC section for threads, questions and input specific to TNBC.
(((Hugs))), and glad you've found us! Deanna
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Thank you. I found the page and I was happy to find somewhere to talk about concerns, but was confused as there were so many topics x
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Jek, welcome. So glad you found the thread recommended and found it useful. No matter what thread you post on, you will find someone to talk to of a like mind.
Love n hugs. Chrissy
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IBC question. An acquaintance has been DXed with IBC and I am confused about the staging. She had 6 rounds of neo-adjuvant chemo, which included perjeta and taxotere. Then a BMX, now rads and herceptin. She says it is stage 4, but the treatment sounds like stage 3 treatment. I am wondering if she confused the skin involvement, which is often referred to as "metastasis" withdistant mets. Any insight? Has anyone come across the above treatment as first line treatment ina stage 4 situation
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Momine in a stage IV dx the chemo could be the same but it is not usually called neo adjuvant and they don't usually perform mastectomy if you are stage IV as it is considered already outside the breast. You could indeed be correct in thinking she should be classified as stage III.Hope your friend does well with her treatment.
Love n hugs. Chrissy
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Chrissy, thanks for your reply. Something is definitely off somewhere.
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I think that it is only because it is IBC, that they do it that way. But I am not sure..
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I have a question ladies. My mom was DX in June 2011 with stage 2 BC, no nodes involved, 16 rounds of chemo and has been on hormonal therapy ever since. Well, her recent blood tests came back with her calcium elevated to 10.9. She is having a full body scan tomorrow. I am terrified. Just was wondering how high your calcium levels were when diagnosed with bone mets? I know I might be reaching for hope straws here and really everyone is different, but 10.9 doesn't seem THAT high to me . Please enlighten. Me ladies!
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Is stage 4 dx'd ever w/o symptoms? I'm not sure how to word this question. I'm going for 3 month check in July and wonder how will MO know to check for reccorance if the have no symptoms. I'm guess I still worry that this beast is lurking in my body and I have no clue.
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Hi, Lolo ~ To answer your question, my calcium level was 9.2, but my AST was 31, and my Alk Phos was 617 when my bone mets were dx'd. I'm not a doc, but without the presence of higher than normal liver function readings or CA27-29 (tumor markers), I don't think I would be overly concerned about her slightly elevated calcium level alone.
tangandchris, blood work, as mentioned to Lolo, can give your onc clues if anything unusual is going on. That's how my onc realized something was amiss -- my high Alk Phos and then my CA27-29 came back at 155 (normally in the 10 to 12 range for me). Those numbers triggered a CTScan, which divulged bone mets. And, yes I had been having some rib and back pain, and I had lost weight. But I and several docs and xrays had chalked them off to other things. The blood work was key in realizing something more ominous was going on.
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thank you for your reply DLB! My moms scan is today, so I guess we will see what happens. 🙏🏼 you look like you are doing great and I pray that continues! God Bless:)
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I have a question that I just don't understand. If a person has a double mastectomy - how does the breast cancer come back in the breasts? Aren't they gone? I've wondered this for a long time and maybe I'm missing something. Thanks ladies for your input.
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Hi good question
Even with the best surgeon some breast cells remain. I had a suspicious. lump on a scar that was tracked for months but did not turn into anything. I did end up with metastatic cancer to the bone. So the breast cancer traveled to my bones likely before treatment and hid there for a few years then started to grown and cause pain that led to diagnosis. That is how my MO has explained it.
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I had a recurrence to a lymph node just above the implant under my collar bone - even tho there were clear margins and the sentinal lymph nodes on both sides were clean. Just lucky to have a micro-burst that was hiding somewhere & started a new home.
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Minus Two. Sorry for your node! May I ask how it was discovered
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