If you are not Stage IV but have questions, you may post here
Comments
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I just wanted to respond to the liver met symptoms query. A lot of people don't seem to have had any symptoms but I can say that I had discomfort in my upper right quadrant, felt nauseated every day in the months before my diagnosis and had noticed that things weren't right when I used the washroom. It's horrible to discuss but since my liver was affected, I had a lack of colour if you get my drift and it was like I had a constant case of Norovirus. I've had IBS and stomach issues because of my migraines, but this was different and I knew it but didn't know what was wrong. I didn't have any jaundice - my eyes weren't yellow and neither was my skin.
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I'm not sure what was meant by "In stage IV some still get it because it buys time" in relation to chemo? Chemo is usually the first treatment for stage IV. I'm on Tamo and having Zoladex, but I'm fighting for my life, not just buying time. I was stage IV from the beginning and now am having regression and am focused on getting to NED. I know I can't be cured but didn't have 18 treatments just to buy me a few months. Kathy Rich was with us for many years as a stage IV metster and only recently lost her fight after what I'm told was 19 years as a metsister. I'm aiming for that kind of time. I may not get it but I'm going to do whatever I have to try to get there.
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Hi there lovely ladies
I hope this isn't a silly question but
is having IDC more likely to get mets or being nodes + for I've found that some of the ladies who have mets, most seem to have had IDC ,and a real mix of node involvement.0 -
Jojo, I'm not aware of any research that would proove one way or the other that having IDC would make you more likely to get mets. You have probably noticed the numbers purely because IDC is the most common form of BC and so would naturally seem to have the most involvement.
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Thanks Chrissy that made sense
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Hi, I hope you don't mind me asking, Chrissie mentioned vascular invasion as an indicator of possible future mets. I keep getting conflicting opinions on Lymphatic channel invasion, one onc said it is relevant another said because I had 3 positive lymph nodes and extra-nodal spread it made no difference. My CT scan was clear but it plays on your mind when you get different answers.
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Kylie, I understand that there are many women like you who have nodal involvement and who are scared about the possibility of having the BC move to another location. There are also many women who have no nodal involvement who have the same fear. Fear is what we all have to learn to either ignore or live with because if we allow it to rule our lives, then we no longer have 'our' lives.
Getting BC in the first place is and was truly a crap shoot and there is no confirmed information as to why that should happen to one woman and not another. Why should it be any different when it comes to getting mets?
It takes one cell to be floating free in our system and for that one cell to find a home, be nourished and flourish and we have a met. There is not a doctor or scientist on this earth that can predict why or to who this may happen, all they can do is offer us the treatments that are available and so far proven to keep most of us safe.
Yes, I am stage IV but it does not rule my life and I have never been overly troubled by the fact that I am going to die...............I would have anyway as it is the cycle of life. The only difference being stage IV has made to me is the increase in doctor visits and the fact that there are now a lot of things that I used to do that I no longer can...............but aging will also limit those things.
What I am trying to say in a nutshell is, please don't waste your days, weeks, years worrying about something that may never happen. All you can do is have your recommended treatment and live! If you want to change the way you live to perhaps a healthier life style by all means do it if it makes you feel good and happy but don't absolutely have it in mind that it will keep you free and clear as that truly is in the hands of G*d....................what will be, will be.
Love n hugs. Chrissy
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Chrissy, although I am only stage III, I agree. Yes, this disease have made me more conscious of my mortality, but I intend to live what life I have left, be it long or short. My favorite onc on my onc team kept saying the same thing, "live your life!"
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Thanks Chrissy, that was beautifully put. I think because I don't talk to anyone "live" about my worries I have used this board to sound things out and I appreciate you openess. There are no guarantees and enjoying the life we have, and realising bad days are just that - days- is so important. x
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Katopet,
I think there is some mis understanding. Lyphovascular channel invasion means that the cancer is on the inside of the system. Extra invasion means that it has grown through the wall of the lymph system and has left some cancer cells behind.
I hope this helps.
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Ladie's, thank you for allowing this forum to exsist...........I never thought I would be the one... We all felt that way when dx. I have several friends in stage IV. By my signiture you can see, I was pretty close... Heres the thing, when I was done with my treatment, chemo bmx, rads ooph, tamox, I went crazy, I lost 40 pounds, ate kale and spinach everyday. I was so afraid to put anything into my system that could bring the cancer back... Well since last year around this time, I have put on 15 lbs, I found that out today at lymph theropist, she showed me what I weighed last year this time. I feel that I have become complacent, I started eating things I enjoy more, in moderation.... I think my culprit is red wine, I have a glass every night with dinner, I have talked to onc. about it, he claims live my life, in moderation. Here in lyes the prob, Sometimes I am not moderate, and I enjoy myself to much, then, I just know I am asking this thing to come back............I want to live, and I know this damn thing can come back, weather I excersize 24/ 7 or I have my wine every night. The guilt of not living a completely clean life is taking a toll on me!!! What is moderate, where is the cancer happy med. I know there is no cure, I just want and pray the Lord lets me raise my 11yr old and 7 yr old. Sorry for the rant, I am struggling these days. I am not afraid to die, I am afraid to leave my children without a mom, I know this is a fear we all share on some level. How do you, live with out just waiting for the other shoe to drop, and if it does BLAMING YOURSELF.....THAT HAD YOU DONE SOMETING DIFFERENT, WHEAT GRASS EVERY DAY ECT... I respect your time and am so sorry for rambleing................I don't really even know what my question is, but somehow I STILL NEED AN ANSWER.........................................thank you so much for listening...
Blessings to all...........
Stept
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Sorry ma111, thanks for that, it was me not being clear. I have both lymphovascular and extra invasion. Kylie x
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I'm sorry to hear that news Katopet because that does increase your risk being extra invasion. However, usually with 3 out of 26 nodes being positive is not normal to be extra invasion. I was hoping good things for you.
Faithfulheart, Thanks for the blessings! I am not one to believe in eating kale is going to prevent cancer, especially breast. There really isn't well prepared studies to show evidence on anything, even the one glass of red wine at night. Don't go through a guilt trip making yourself insane thinking you can prevent the cancer from coming back, because you cannot. Moderation is key for overall good health not preventing cancer. You were as close to stage IV as can be. 10 of 17 nodes is alot. Live life now. None of us want to leave our children. My daughter was 16 when I was first dx. She is now 18 and in college and working. My siblings will take care of her when I pass and they will do a good job.
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Faithfulheart, I can identify with what you are saying as I also sometimes do not live up to the healthy ideals that I believe in. I try not to look back, but look forward. Just because I did not live 'healthily' yesterday does not mean that I can't do better tomorrow.
It is hard if you have a family. But if following a healthy diet is important to you and you have done it before, you can do it again.
I also like wine so I know how that is.
Find the way of living that you believe in and can follow, and do it. Don't feel guilty if you lapse but learn from it.
Good luck to you and your children.0 -
Chrissy and Stept
Thank you ,what you have just said has been like a light going on for me
It's so nice that we all can get strength for each other,my fears surround me daily and I'm constantly reminding myself to live life, and that I may never have to face it again ,but. I think it's something that we all have in common we all have different dx and different treatments but we live with the exact same fears, I appreciate all of you
Princessjojo0 -
Faithful, Ii think it is a hard balance and something many of us struggle with. I used to have a glass of wine with dinner most days and sometimes two. Now I limit myself to three glasses a week. If good friends invite me out to a nice retsaurant, as happened yesterday, I have a plate of pasta or some meat, which are things I otherwise avoid. So I try to eat a healthy diet most of the time, but without driving myself completely nuts over it. I am also trying to exercise more regularly, but again without having it take over my life.
Since there really is no way of knowing for sure if it will make any darn difference, I try to stick to lifestyle changes that are not too cumbersome and that make me feel good, cancer or no cancer.0 -
Hi Ladies - I've been reading all of your posts and boy - talk about courageous and amazing - you are all "the bomb.com"!!
I am praying for you all!! Another question I hope you could help me with. My friend is at her 2nd treatment today getting the lovely cocktail of taxol and gemzar but she has to meet with a neurologist first b/c her MRI from Monday showed a lot of spots in her brain; her onc said it could be nothing or it could be tumors so that's why he's having her meet with the neuro first. She has a "lazy/droopy" eye and that's why he ordered the MRI. Could it really be "nothing" or if it is in her brain - how much more chemo/torture does she have to endure? I hate to admit that she might not beat it b/c she is a fighter but I'm afraid the chemo treatments will do more harm than good and I'd rather she have quality time then sick you know?? She has a 13 y.o. son and 7 y.o. daughter so alot to think of.
I know she will do whatever her onc tells her but I'd like to have some research/info that I could at least share with her to help. I've never lost or watched a friend die (I'm 43) so this is very hard but I want to be strong for her and her family; that's why I turn to you wonderful women - you give me strength for her b/c of your courage and all you've endured. Thank you for your assistance, information and prayers.
God bless you all!!!
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Hi There, wondering if any of you lovely ladies have brain mets. I am a stage IIIC, BMX no recon 2 years ago and the whole bag of fun (ac, taxol, rads, a/I's) I am not a headache girl but have been noticing sharp pains in different places and of course am wondering if this is how it begins.
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Hi, I have a question that maybe someone can help me with. I am stage IIIc with 17 positive nodes. Had an oncotype score of 6. MO said chemo might not do anything but give me side effects. My question is if there are some dam microscopic mets that have not shown up yet will chemo kill them. I had a clean CT and PET. The MO never gave me a direct answer to any of my questions. My primary is trying to get me into Beth Israel for another opinion, but quite frankly I trust the ones who have been there over the doctors. The other thing is when I look at the chemo thread they are all pretty much getting the same kind of chemo even though some have different types of BC. Is there differences in the chemo's?
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Hi Dianarose, yes there are different chemo's, several of them. They will change depending on ER/PR and Her2 status, combined with your health history. Theoretically, chemo should blast through your entire system and kill any micro mets, unless they are in the brain or spinal fluid, but I guess it depends on how stubborn the little buggers are. If in doubt, consider all the info they give you and make a choice. I had chemo with no lymph involement, and I would do it again without question. But I don't believe they did oncotype testing then and probably a few other things that might have weighed in. Even though I am stage IV, I am very comfortable with my decision to hit it as hard as I could at the time. So just consider what options you have and what you will be comfortable with years later.
onward, I have no knowledge of that. I did have really horrible headaches for a while, but my brain is fine (so they think, lol). It turned out to be high tension from a horrible boss, but it had me crying in pain, and I have a high pain tolerance. I had some wonderful drugs that helped, and I left the job, I don't believe my head has hurt since!
isugirl, it is very good that your friend is being checked so well, and I hope it turns out to be nothing to do with cancer. I believe they prefer to do whole brain radiation if it is (WBR), and start tykerb, which is one of the only drugs that pass the brain barrier.
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Dianarose, I agree with you questioning the chemo. You had a lot of positive nodes to not get any. Are you other wise healthy enough for chemo?
There are differences in the different kinds of chemo. The Taxens can cause neuropathy, but do better at killing the micromets. Keep in mind that you are ER+, that's a good thing. Some people stay stable a long time on anti hormonals like Tamoxifen. Get a second opinion.
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ma111- I think I am physically healthy enough for chemo, not sure about mentally though. The only 2 physical things I have are heart palpatations and I take meds to prevent ocular migraines.
I had a message on my machine yesterday when I got home that a MO in Boston had my file and was reviewing them and someone should call me on Monday.
When I asked the MO here about different kinds of chemos and if there is one that is better in fighting Lobular he said they have never studied that. I found that hard to believe. I will feel much better getting a 2nd opinion from one of the top places in the country.
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Dianiarose,
I'm glad you are getting the second opinion! Let us know what they say. Mentally none of us are ready for chemo, but just realize we need it to live. That will over take the feelings of not being ready for chemo. It is hard. I cried on my first chemo infusion and that was after my family doctor called me in some ativan. It's not easy at all.
Post as often as you want and we will do what we can to talk you through it. There are some wonderful people on these boards.
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ma111- I have found a lot of research that says lobular doesn't respond to chemo like ductal does. I found one study where some were treated with hormonals alone and some with chemo and hormonals and the end results were about the same. I have read up on the hormonals also and I didn't realize that they can kill cancer cells as well. I thought they just stopped them from growing. I want to have all my questions before I go to Boston. If you think of somethings I should ask please let me know.
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What a wonderful post. Thank you very much. I have no questions, I just thank you for reaching out to offer comments or answers on the topic.
I have felt bad on occasion when I look through the "active topics" and accidently post on a stage IV board. I try very hard to give you girls your own space on this forum that I feel you are entitled to.
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Dianarose, I had TAC chemo. You can ask about that one. I have seen some studies where patients with lobular cancer did respond to chemo, as have some posters on this site.
You will be suprised how mentally strong you are, and there are drugs to help you mentally also.
Ask the onc all the questions you have. They are valid questions.
Let us know what you are thinking after the appointment. Maybe post on the lobular forum.0 -
Hi Kim,
I am going to suggest that you ask your friend if she wants you to research treatments and the like before you just hand a stack of papers over. A lot of women find it insulting to be handed research or suggestions out of the blue. It feels like what we are doing doesn't measure up to those around us, and yet we are the ones having conversations with our doctors that others are not privy to. So, before you do spend a lit of time researching other treatments, make sure it's something you know your friend would be happy to get.
I'm not saying your friend won't appreciate it, I'm just saying to check first - it never hurts to ask how to help.
I'm really sorry about your friend. I know this is very hard on our friends and families too. Here's hoping her treatment works quickly for everybody's sake.
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Dianiarose,
There are some chemos that are out not that were not out just a few years ago. One thing about breast cancer is it is changing and there hasn't been enough time to do a lot of research on some of them as the trails may take years to fill up then a 10 year post study period. I did a lot of research in pub med and the Cochran files.
Also ask and research the Taxotere/Carboplatin. That's what they put me on and it bought me a lot of time for the bad shape I was in. I also have a cancer that becomes immune to chemo with being ER- and HER+ and it's inflammatory breast cancer. If you are willing to do chemo to buy time, don't give up. It is very hard reading what is on the Internet. There are also vaccines that are available, however, you have to have had a Taxene to qualify for most of them. Taxotere is a taxene. It is a wicked chemo, post often so we can help you through it. It gives us who no longer work something to do.
Kim, I agree with Coolbreeze. It can be interrupted as you think she is not fighting. That really hurts. I know you mean well and so will your friend, but it will throw a wrench in your relationship.
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http://en.wikipedia.org/wiki/Ptosis_(eyelid). This is a reference for a drooping eyelid (sorry it is wiki)...just read some of the thread Kim, so sorry if you already had it answered. I remember when my mom had this sudden sign it was the lead in to a brain tumor surgery which she then lived for ten years with before her breast cancer, second primary dx.
Thanks ladies. I really appreciate this thread. It is great to come here and hear others concerns. I haven't posted because nothing much is new. I decided to do some travel and trying desperately to improve my health. I am doing a gi/liver cleasne now. My one doc was concerned while another was not, so I made an appointment with a GI doc to be sure. I never drink alcohol. I also got an Oder to repeat the ct with contrast and will do that soon. I have nausea everyday though which still concerns me.
You ladies who are stage Iv and living active lives are my truly amazing! I have a lot of good reading here. Thanks for the thread.0 -
Ladies ....how or can I stop fear...I meditate, I believe intellectually don't worry about things that aren't actually happening ....but I am in a loop right now.
I hurt my back on Easter, so afraid of mets ....went to my Internist and got my MO in the loop....did blood tests and X-rays ...all came out Ok...said arthritis....then I went to OB-GYN ..while there said lets do a DEXA scan.... Came back osteopenia in my hip and osteoporosis in my spine .... I'm 46, a runner, and this diagnosis flipped me out ...could it actually be cancer ...since then all I think about is spine mets .... But I am too afraid to find out .... The pain goes from lower back, then my tail bone, then tingling in my upper hip, then my upper back, then my neck, etc.... I took a Xanax tonight and seems like pain isn't there ....AM I GOING CRAZY? ...
I keep thinking I don't want to know ....and realize I'm not living life being in anxiety attacks constantly.....
Advice?, encouragement?, does it sound like mets?...
I read so many strong women on here and I feel so small and weak right now ..
Thx for listening.....0
