If you are not Stage IV but have questions, you may post here
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Thank you all so much for taking the time to answer my questions and the questions I notice that so many others have as well. Great advice and I will do my best with my friend. I hope I speak for your friends and family in saying that our intentions are good and we want to be there for you in any way we can. Everyone on this website is so kind and caring. It makes me realize it's a small world and most people are good. We lose sight of that when watching the news and going through our daily lives with blinders on. Thanks and I pray for peace and wellness for you all.
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Concerned friend,
We are happy to help and want to. I think the more we do for friends of a stage IV, the more supportive you can be for them.
Thanks for the prayers for us!
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I had ct scan and bone scan yesterday because of suspicious lesions in my arm bones. I have been having arm pain for 4 months, but I thought it was just tennis elbow. I am so mad at myself for not bringing it to my oncs attention sooner. I will get a call Monday with results. I am so scared. I don't know what to think and I don't know how to proceed if it is bone mets. I know it is too soon to be thinking stage iv since I haven't got the call yet, but i am. How do you cope, keep a job, etc. My mind is spinning and crying and I don't know how to cope with this. Any advice?
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mammalou--I'm so sorry you are finding yourself in this position, and all of us know what you're going through.
The first thing I would say at this point is to try not to let your mind get ahead of itself. You are not "there" yet, and may never be. Secondly, if you do have mets in your bones, it's not a death sentence. Thirdly, you must not blame yourself. Of course we all have pains. If every time we had a pain we rushed into the doc for a scan, they'd soon stop listening to us. Heck, I let my back pain go for over a year because it was off and on, and the nurse practicioner at the oncologist's said that only if the pain is constant do I need to worry. Cancer doesn't follow rules. Blaming anyone, least of all yourself, is not helpful.
If you do get bad news, know that the fear will lessen, and you will adjust to the new "normal." You will be able to have a fairly normal life, except for the tests and treatments that will keep you stable. I remember when I mentioned to my onc that I didn't want to have surgery for my back because if I only had a couple of years to live, why would I want to spend a year of it in recovery? He looked at me and say,"Why do you think you only have two years? I have patients I've been treating with this for 15 years. We can treat this." And this is with mets to my entire spine, ribs and spinal bone marrow. My back has now recovered to the point where surgery isn't necessary. I've been stable for 9 months, and hope to be here for many more years. And I feel well, too.
Try to put this out of your mind this weekend. Be sure you have someone with you when you hear the news, whatever it is, on Monday. Let us know, either way. We'll be rooting for you and hope you discover arthritis and aging bone degeneration. {{{{hugs}}}}
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Hi mammalou so sorry to hear that you have been having pain but not every pain is cancer............it could just be arthritis or anything in between. I know you are really worried about the possibility of your pain being mets and waiting for results is hard no matter what results you are waiting for.
I was dx's with bone mets three years ago but they have not stopped me from having a good near normal life. I even came to the USA on a huge tour last year and am at the moment preparing for knee replacement surgery in two weeks. I'm telling you this to show you that being stage IV is not and I repeat not and automatic death sentence. Yes it can and does shorten your life span and can and does slow you down some but it does not stop you from living and loving life.
Try to stay busy this weekend and have someone close to you when it's time to get your results as I'm sure you would appreciate the support be the news good or bad..............it's just nice to know someone is there. Please let us know also.
Love n hugs. Chrissy
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Thank you for your kind words and encouragement ladies. I can't tell you how much it has helped me today just to know there is hope if it is mets. I will have to let my husband read your posts as he could use the encouragement also. Thank You!
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Mammalou,
Sometimes my coping mecanism comes in the form of a pill called ativan. Call your family doctor and see if they will call you some in. it helps with the crying spells. Being scared is normal. Most of my support network was friends at work, so holding down a job went well for me. I didn't stop working untill I wasn't able to work 20 hours.
Don't beat yourself up over not going sooner to the oncologist. Sometimes bone scans don't pick them up right away anyway. We cannot tell you what your treatment will be. I am glad that you are ER+, sometimes they can treat you with a anti hormonal. I wish I was there and could give you a hug and just let you cry for a long time. Like Crissy said, not every pain is cancer.
Let us know what they say. I will pray for good results.
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Mom reoccurred while in her fifth year on arimidex. Has liver mets. Has anyone here with liver mets ever gone back on hormonals with any success after a course or courses of chemo? Thanks and blessings mary
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Hi Mary, sorry to hear that your mom has had progression. The thing is with all meds once you are stage IV is that the cancer seems to adapt to them after a time. I don't have liver mets but I was on Arimidex until I has a small progression and was then put on Femara with good results. I have heard that some, after having chemo have gone back on the AI's with good success.
The thing is, that no one knows how long we will get from each medication or how effective it will be and it sometimes takes a few different tries before we find one that is going to be effective for us. I wish your mom well and hope that she will indeed be able to go back to the gentler AI's after chemo.
Love n hugs. Chrissy
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mkk, 5 years is a long time for that. I hope she continues to have good results after a change of meds. Like crissy said maybe after a gentler chemo she can go back on it for a while.
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Mammalou, any news? I'm right there with you. I'd been having a chronic cough the last few months and I didn't think anything of it, I'd had very similar bouts several times that lasted 2-3 months. This one was going on 6 months and had gone beyond being annoying to life interfering. I really did not think it was cancer related, and had only called my onc to see they could get me some meds to help with some sleeplessness. But they scheduled scans the results were lung, liver bone mets. I hope that is not what has happned to you. Keep us posted.
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I got the news that they did not see MBC in my bone or ct scans. Amazing! They are sending the suspicious x ray to be read again. I feel so lucky.
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Mammalou, happy for you.
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Great news mammalou really happy that your scans are clear!
Love n hugs. Chrissy
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Hi, when I first came to this site my MO said I was stage 1, then I had my lumpectomy and went from 1 to llla, now the doc just called and said my ct showed nodules on my lungs. I don't think I can take much more. She said it might not be cancerous and is setting up a pet scan. Has anyone had a pet scan because nodules showed up on the ct. She said it could be from smoking yrs ago. I have not had anything go right so I am terrified. She said that this could meam no bmx. I asked her what about all the breast cancer and she said they would only treat it with chemo and hormonal if the pet scan shows cancer in the lungs. I don't understand why they wouldn't do the bmx. I don't want to have breasts that I know are full of cancer. I am freaking out here and hope someone can help me with some info.
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Dianarose,
So sorry you are going through this crap. With Stage IV the goal is to improve and prolong life. If the lung nodules a cancer, then it's IV. I'm so sorry. I do have some non cancer and cancerous nodules. I'm glad you used to smoke, that's on your side for it to be non canerous nodules.
BMX would not necessarily increase the life span if the lungs are involved, so not worth going through the surgery.
The first thing to do is call the doctor and ask for an antianxiety. They help me a lot.
I will pray that those nodules are not cancer. I so hope they are not.
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Dianarose, even if you're stage 4, you may have lots of time. I'm 3A right now, with suspicious nodules in lungs and in chest lymph nodes. I'm going to therapy now to learn how to deal with what I may be dealing with. I really feel for you...0
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I did talk to my MO on the phone tonight and she said it was a good sign that they are in both lungs and hope that is is scar tissue. I had radiation for the other breast 7 and a half yrs ago and I am hoping that it is from that, but the way my luck has been going I am just preparing for the worst.
Ma111- I see that your dx was in 2009. How are you doing now?The reason I want to have the surgery is because I am multifocal with cancer being in every piece of tissue removed from the lx and if I don't remove the breast doesn't it leave a chance of spreading even to more areas?
Granuaile- I don't know how to begin to deal with it.
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Dianarose, I have inflammatory breast cancer which is rare, aggressive, fast growing and develops an immunity to chemo. So, we really can't compare it to the way you will do.
If you are ER+, there are things besides chemo that can keep things in check for a long time.
The radiation you had on the breast could be what caused it, but you said it was in a few different places.
That was nice of your onc to talk to you on the phone.
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Dianarose, there are many things that can show up on scans that are nothing (nodules on lungs can be from smoking, allergies, prior pneumonia, etc). Even a PET might not tell the whole story. There's a thread by SandyinNJ about a major scare she had recently that went all the way to lobectomy to find out that she had prior benign scarring.
Your Onc is right, it might not be cancer. But it's great that she's being proactive in checking things out.
FWIW - after a year of treatment I did get a BMX even being Stage IV to start. Although I had other factors (tumor broke through the skin and some IBC apparently) my surgeon is one with the school of thought that removing the tumor of origin reduces the tumor load so that the drugs (chemo,AI, etc.) Can concentrate on the othe stuff.0 -
I just ran across this and wanted to post it....any possible approval of a new therapy that works is a good thing...I get all this stuff in my email everyday for my work...if it helps one sister then it is worth it-this site that it is linked to ois a great one to get news on all of this kind of stuff
http://www.clinicaspace.com/news_story.aspx?NewsEntityId=254852
New Genentech (RHHBY) Breast Cancer Drug Shows Late Stage Trial Success
3/30/2012 6:39:17 AM
SOUTH SAN FRANCISCO, Calif.--(BUSINESS WIRE)-- Genentech, a member of the Roche Group (SIX: RO, ROG; OTCQX: RHHBY), today announced topline results of EMILIA, the first randomized Phase III study of trastuzumab emtansine (T-DM1). The study enrolled people with HER2-positive metastatic breast cancer (mBC) who had previously received treatment with Herceptin® (trastuzumab) and a taxane chemotherapy. The study showed people who received trastuzumab emtansine lived significantly longer without their disease getting worse (progression-free survival, or PFS) compared to those who received lapatinib plus Xeloda® (capecitabine). Final results for overall survival (OS), a co-primary efficacy endpoint of EMILIA, are not yet mature. The safety profile of trastuzumab emtansine was consistent with that seen in previous studies. These data will be submitted for presentation at an upcoming medical meeting.Trastuzumab emtansine is an investigational medicine known as an antibody-drug conjugate (ADC). It is comprised of the antibody trastuzumab and the chemotherapy DM1 attached together using a stable linker. It is designed to target and inhibit HER2 signaling and deliver the chemotherapy directly inside HER2-positive cancer cells. Trastuzumab emtansine reinforces Roche's personalized healthcare approach of developing targeted medicines to fight cancer.
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I have a question regarding back pain and femara. I started Femara last November, started with every second day and then for last month I was taking mostly every day. I had probably 20 and more hot flashes every single day, pain in my feet and hands mostly in mornings but I was ready to deal with that. Then, on Monday as I was working I felt my back was sore. I am working as a nurse and Monday was very bad day, I had lots of bending and I was never careful with my posture. As the day was ending I was feeling soreness. I was off on Tuesday and sore back was there but manageable. Then on Wednesday I had very sore back when bending (like putting on stockings made me almost cry). I took some pain medications and went to work. It was sore only in certain positions, going out of car and bending. Thursday was bad also, I do not even know how much of meds I took but pain was always there with bending. Today, I can bend more before I feel pain. I stopped Femara on Monday.
Of course my first thought was bone mets. When I think clearly I know it was caused with my over-bending on Monday as I was feeling soreness while working. I think I am looking for reassurance.
I did not call my onc but I am planning to call him on Monday to tell him I stopped Femara.
Any suggestions?
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Nikola,
Try moist heat and advil. I hope resting all weekend also helps. Avoid steps, but do a lot of wallking.
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A wonderful thread, I don't post in your area of the forums, however, I do read often. Now I can come in here and ask anything that I don't understand. I definitely follow many stories in the Stage IV forum. While I have no diagnosis, I sure have learned a lot from you girls.
A fan in cyber world!
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Chrissy, thanks for this thread.
While I have been dealing with BC, my aunt has been dealing with mets. 18 months ago she was DXed with 3 separate primary cancers: breast, endometrium and lung. She had surgeries, some rads on the boob and 6 taxotere treatments plus an AI. All seemed well. About a year after her DX they found mets in her liver and one growing next to her spine. They gave her 3 taxotere treatments and rescanned. The liver mets were gone, but the one near the spine was still there. So they gave her another 3, and they scanned again. Now the one near the spine can't be measured. So they will give her 2 more taxoteres for good measure (and because she is tolerating chemo pretty well) and send her home.
Is there anything else that ought to be done at this stage?
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Nikola as Ma suggested, heat and advil and rest are the three best treatments for back pain if it due to over stressing your spine and that's exactly what it sounds like...............but good on you for seeinmg your onc and telling him you have stopped your Femara...........it's important that he know.
Sommer, welcome. Please ask away and if I can answer I surely will.
Mommie, it is possible that your mom's onc will put her back on an AI but a different one as she has responded very well to the chemo, otherwise it will be a watch and see when or if anything developes again. Your mom will need to be vigilant and anything that is new, painful or unusual and continues for a minimum of two weeks, then she needs to return to see her doc ASAP.
Love n hugs. Chrissy
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Over the last couple of days I read two new threads about possible mets, in which posters mentioned a symptom of a feeling 'like a pulled muscle'. One thread was discussing bone mets and another post was about a met in the abdominal wall.
To those who had this symptom, I would like to know: did you have the pulled muscle sensation only on movement, or was it present at rest also?0 -
Thanks Chrissy, just to be clear it is my mom's sister, my aunt, not my mom. Although my mom has also been through a bout of cancer, but she is 5 years out with no mets so far, which is great.
It is really wonderful that my aunt responded so well to the chemo. I hope she can get a decent interval with no troubles or progression. I will relay the info about possibly switching AIs.
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Racy I'm sorry but I can't help with that one as I never felt that with my bone mets and I don't have abdominal mets.
Mommie, sorry about my mix up thinking it was for your mom. I glad that you are caring enough to ask on your aunts behalf.
Love n hugs. Chrissy
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Thanks chrissy and ma, I know my back pain is probably from overdoing it but fear is still there. It is still sore when I am bending but I could bend more today. I went yesterday to gym and was walking/running on treadmill for 40 mints and no pain. I have no pain with walking but bending and sitting is a problem. I can sleep but have pain with turning in bed.
I never had any problems with my back and not sure if femara has something to do with it. My last femara was on Monday and I had only 3-4 hot flashes since then (versus 20/day when on femara).
I wish I can get bone scan. I do not have scheduled appointments with my onc, only if I have some concerns and he is not doing any scans/blodd tests since I had no node involvement and had bilateral mastectomy.
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