If you are not Stage IV but have questions, you may post here
Comments
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Jen, my understanding is that how well stage IV can be managed has to do with the cancer's responsiveness to treatment and how aggressive it is, not with whether the mets were discovered in January or in May. Obviously it has to make a difference at some point, I would imagine, but not enough to warrant invasive scans, for example, every 3 months.
The way I try to look at it is that if I am not feeling anything and the docs are not seeing anything unusual on the blood tests, then I choose to assume that I am fine and fully enjoy being fine. If the day comes when I AM feeling off or the docs finds something, I will deal with it then.
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OK, I finally understand. Again, thank you for your time & patience & generosity with your experiences and knowledge. Blessings to all, Jenifer
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Thank you for setting up this thread as I really am in need of positive news/encouragement for my best friend. This is her 3rd time with cancer - unfortunately twice in the last 3 years and this time she has mets on her liver, pancrease, lung and now a large mass on her neck lymph node that is pushing on her thryoid which is pushing on her layrnx so she is having a hard time swallowing normally. The spots they have found on her liver and pancrease are mm size but still there and the mass on her pancrease was called a "hypermetabolic" something - not sure what this is or means. She was DX in January and has had 2 brief chemo treatments but they weren't responding as quickly as her oncologist wanted so now she has started a new regiment. Last week (day 1) she did a combo of taxol with gemzar for 30 minutes of the 4 hour treatment then this week (day 8) she will do gemzar for 30 minutes only. I believe she will be off for 14 days then start again - not sure? She said within a few hours she had PAIN in her tumor areas - has anyone had this affect this soon? I really am worried for her but don't want to show it or share that with her so I'm hoping that I can find some support/strength here from you brave ladies!! My friend is not like me who surfs the internet for information - she just does what her doctor says so I'm hoping I can have some info if and when she's ready.
Thank you all for any help and PRAYERS!! I will be a 3 year survivor this summer but would gladly take this from her and carry as she has a 7 y.o. daughter and 13 y.o. son. If you would like to PM with any info or other research, I'd appreciate it.
God bless you all!
Kim
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Hello to everyone- i have a liver mets question. Are there symptoms? My onc is sending me for test #3 for liver mets. It seems everytime she finishes one test she decides to try a different test to see. I am now headed to my third set of tests.
First test i think was ultrasound and cat scan
Last test they said they thought they saw a blemish or something that is why they said they redid test with ultrasound again.
This time they said the blemish is fine but now they really should do an MRI and scan as well and that a meeting is needed. Needless to say i am getting a bit worried. When they told me my bone scan was fine i was told on the phone why do i need a meeting for this. I know i had alot of cancer in me but i like to think it does not mean i have mets for surre.
I dont think i have any type of symptoms but i guess i am not sure exactly what symptoms there are. The only odd thing i have noticed is my belly looks a bit swollen all the time but i also had both my breasts removed so i suppose it should look bigger. I guess i am sorta scared and unsure what to think right now.
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Can someone tell me how to start a new thread?
My concern is a "lesion" on my liver. I am getting another Abdominal CAT scan soon hopefully and this time they are using contrast. I am shocked by this as it is not related to the Breast Cancer I am told but I guess we will see. (I do NOT drink more than maybe a mixed drink once or twice a month!)Also I read this story and if you are so inclined, please sign the petition. I think this boy deserves an award!
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MRDRN I have PM'd you instructions.
Isugirl/Kim, what you friend is feeling is possibly tumor flair and is quite common. The chemo sounds like it may be doing it's job and killing cancer cells and that is the cause. I hope she has a full response to her treatment.
Beth, I don't have liver mets but I have learned from others that there are not always symptoms when there are liver mets present. Hopefully one of the other girls who does have them will be along soon and will be able to answer your question more fully. Good luck with all your tests.
Love n hugs all! Chrissy
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Hi Beth,
I am reading up the thread here and sorry to read about your troubles. Just want to send you a cyber ((((hug))). I know you must be scared. Yes the swollen belly may be a sign. LFT's (liver function tests ...as in blood levels are elevated many times...causing the eye whites to become yellow) Sometimes people get nauseous and sometime no symptoms. The most important thing I think is that it seems your doctor is trying to get to the bottom of it with you
Best of luck and keep us posted. Sometimes we worry ourself for no reason and I hope this is the case for you. 0 -
Beth & MRDRN - I have multiple liver mets that were discovered through routine scanning. I had no symptoms and still remain asymptomatic. There is a thread started in the stageIV forum that you might want to have a look at - I believe it's titled "Hey there liver metster" (sorry I don't know how to create link) Lots of liver metsters giving their experiences.
Good luck with all your tests! Keep us posted.
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Thanks Chrissy,MRDRN and barsco1963 i appreciate the replies. A big cyber hug to you too MRDRN as it looks to me like you need one too. I do try not to over worry myself or let my large amount of cancer effect the way i think about everything but once in awhile i fall over thye edge it can be abit overwhelming. I would be very surprised if your lesion is not related to breast cancer. Hopefully either way they can help you. Barsco1963 its almost scarier to think there could be no symptoms to warn us. Did you have them long before they found them? I guess i have unfortunately learned here that finding mets early does not neccasarily mean we will be cureable from what i have read here.
Chrissy i remember you messaging me when i first got here in January. I think you replied to my first post if i remember right -thank you i needed that more than most people could imagine.
Love and hugs to everyone-Beth
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MRDRN - good luck with the lesion. If it brings you any peace, I have "something" on my liver as well (I can't remember if it was referred to as a lesion or not, anymore). Anyway, it was present when I was first diagnosed with BC. The PET/CT scan didn't react, so they weren't worried about it. Of course, it showed up in my last CT scan as well, and was still unchanged. In other words, your lesion may not be anything overly worrisome, but all the testing can be pretty scary.
Good luck.
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Beth - my mets were discovered about a week after my bc dx. Had been having yearly mammos so everything seems to have appeared within a yr. Although they are not cureable they are definitely treatable! Lots of women/men living for yrs with mets. I am very thankful that I am responding well to tx.
Enjoy the day!
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Hi ladies - me again! I just talked to my BFF and she said her blood counts were good today so she will have her gemzar infusion tomorrow for 30 minutes. Her regiment this time is:
Day 1 (taxol + gemzar) - 4 hours
Day 8 (gemzar only) - 30 minutesHas anyone done this combo? I was just curious as to the side affects that might occur? She feels really good today but she has noticed a "drooping eye" over the last few day. Her dr. had her do a CT scan of her head today and now we wait to see if it shows anything that could explain the "lazy/droopy" eye. Of course we hope it's a side affect but given that she has masses near her thryoid and in the C4/C5 area, the eye symptom/issue could be related to the tumors??
Any help or reference is very much appreciated. She does not want to know more than she can handle so I am trying to help her but doing this "behind the scenes" research. I want to be aware of EVERYTHING so I can help her if she needs reassurance or whatever - that's why I depend so much on this site and you brave and inspiring women!!
Thank you -
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whatashoker, The ovaries are not the only source of estrogen. Belly fat also makes it, which makes anti hormonals a good choice.
Julie, Pain always scares us stage IV ladies and we run to the onc.
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Kim, I have had pain with some chemo's after treatment that were in the tumor site. It is called tumor pain. It is a good thing. I can't help with the droopy eye thing. Side effects are the hair loss, vomiting and all the other crap. She is actually on a harsh combo for stage IV. She will be sick.
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Hi everyone, this is my first post on this thread. I'm writing... I guess because I'm very scared and don't know where else to post. I guess I'm looking for some hopeful perspective and encouragement.
I was just diagnosed with IDC in late March. I haven't had any surgery yet, my tumor is less than 2 cm, and from the MRI, US and Mamm, my lymph nodes "look good". (Though, I know looking and "being" good once checked by pathology are two totally different things.)
I've had some pain in my hips and also what I would describe as mild "discomfort" in my ribs for the last three weeks or so - that sort of comes and goes. I've also been (at times) doubled-over by fear and anxiety - which I think is driven by the fact that one of my best friends has stage IV bc, and I've been helping her these last two years. (I think my fear is, in part, driven by supporting someone else through her debilitating fear.) I had an X-ray of my hips and one hip shows a "lucent lesion," and I am now scheduled for an MRI. They've told me it could be many things... arthritis (though I'm only 39), an old injury, etc.
I know there's nothing anyone can say... I just... want to be alright. I have a 3 year old and I have these heart-crushing thoughts about her loosing her mommy... a thought that I just cannot take. If anyone has any encouragement for me... I would be eternally grateful. Thank you so very much.
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In my attempt to prevent metastasis I turned to vegan diet, lost weight, take supplements, walk, take aromatase inhibitors, went through chemo, etc. Basically, I am doing what I hope might help. I was wondering if you have any personal ideas or beliefs as to what, if anything, could have contributed to the return of the disease in your case. And, is there anything you are doing beyond taking prescription medications that helps you fight this terrible disease and makes you better.
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So the recent debate on the "horror chemo" thread got me wondering about something.
In theory, when an early stage woman develolps mets, do they develop differently if she did or didn't have adjuvent chemo.
For example if someone were er positive, moderate size tumor, moderate oncotype, does the chemo delay the mets even if it does not prevent them.
Or are certain locations more likely.
I realize it's hard to isolate that since everyone's cancer has it's own characteristic, but it would be an intersting study.
Essentially even if an adjuvent chemo does not prevent progression, is there still some sort of benefit?
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Esmarelda-I'm so sorry that you find yourself here, in this crappy situation. You are obviously worried that your bone aches might be mets, and I don't blame you. What you might want to do is tell your oncologist about your pains and your concerns, and ask to have a PET or bone scan at some point, preferably before you make your decision about surgery. One reason for this is, you might want to only have the tumor removed- not a complete mastectomy or BMX- if you already have bone mets. Your preferences in treatments might differ depending on your staging. At the very least, get a scan and then find out what your doctors advise.
{{{{{many big hugs to you}}}}}
cookiegal,
I don't think the answers to your questions are known. I've heard of no studies looking into these kinds of comparisons. It's really hard to know about a negative- in other words, how would you know if chemo slowed a progression if you can't know how it would grow without it? Because everyone's cancer is so different in type and speed of progression, I don't think we have the tools to measure this type of thing- at least not yet.
And of course, whatever statistics might show, it would actually not mean much for any individual woman.
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When I was making my choice I really thought about the fact that even with chemo I still had a 10-12% chance of mets vs 14% without chemo.
I figured in terms of quality of life, better to have no chemo before mets appeared, as opposed to chemo and then mets appear.
(Seeing as how the latter scenario was more likely.)
I never thought, oh I would regret my choice since there was such a slender chance of prevention.
But I never thought there might be another benefit.
I realize the OP in the horror thread was in a very different position.
There was also a woman with a grade 3, 50% ki67 posting who had a low oncotype....and that also made me wonder if somehow adjuvent treatment would benefit her even if she eventually progressed.
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Esmerelda, So sorry to hear that you are joining us. This is a good place to get advise and we will do what we can to help you through this horrible time. The first thing I am going to suggest is for you to get some anti-anxiety medication like Ativan or something. The onc or your family doctor can call it in for you. I have arthritis at a young age due to psoaris. The er+ is a good thing for you. There are a few medications that can hold back growth for a while that are not chemo. They probably talked to you about Tamoxifen.
Cookiegal, There have been some studies and the neoadjuvent therapy for some tumors and adjuvant for others does prolong the time to progression. www.pubmed.com
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I don't have a question, just really feel the need to comment on this thread. You stage IV woman, who are taking the time to respond to these questions are "AMAZING". I just couldn't continue reading without being sure you woman realize what an asset you are to these boards. Prayers for all of you, and thank you, thank you, thank you.
Sue
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dana14- I'm not sure if you're addressing anyone specifically in your post,or just putting it out there for anyone to chime in.
It sounds like you're doing a lot to keep yourself healthy and it seems to be working for you. We all seem to find a combination of things that makes us feel as strong as possible. I take very good care of myself- weight has always been good- and started exercising a lot more after my first diagnosis. I also added a lot of healthy juicing and vitamins to my routine, but now I'm wondering if all of my supplements just helped my vascular system grow stronger to support the cancer! I've never smoked, rarely drink, eat organic (not vegan, but plant based diet with wild fish and organic meats when I have them), and walk 3+ miles most days. I have a wonderful, supportive husband, two healthy and self-supporting adult kids, and a peaceful homelife- even lucky enough to be early retired. One of the unfortunate things about this disease is the constant temptation to second guess ourselves. What did I do wrong? What should I have done differently?
As someone with very few risk factors for this disease (other than being female and having my kids fairly late in life--34) I have long stopped asking myself what I might have done to either cause or bring back my cancer. The truth is, it's a very sneaky bastard, and you can do everything right--everything- and still find yourself here. The combination of our own genetic make-up and a variety of environmental factors that plague our advanced societies are the cause, and each of us has our own biological vulnerabiltiy to those factors.
That's not to say that all of the healthy habits are worthless. I don't believe that at all, and attribute my feeling pretty well and recovering from some serious mobility issues caused by my recurrance, to my trying to do the right things. I understand where you're coming from, but I don't think any of us can say what caused our cancer to return. In many cases, it never completely left, even if we thought it did.
Enjoy each day, and try not to obsess about recurrance. You are doing the best you can to stay healthy, and that is a good thing and all you can really do. Try to find joy in each day, and appreciate the health you now have.
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Well said Sandilee. I didn't know how to answer dana14 without sounding harsh or offended but Your words are perfect.
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For those of you with positive nodes, did you have pain in your underarm before your dx?
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CharB22- I didn't have pain, but I had crazy itching. Once the nodes were out the itching stopped.
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Great thread Chrissy, thank you for this opportunity & starting it! I'm just curious what to look for, I feel like I can't trust my body or feelings anymore. For those who had symptoms & found their mets by symptoms....what did you feel? The dr's are vague...I know pain, headaches, etc. but what did they feel like exactly? I have aches and pains constantly from, I assume, chemo & AI's so, what would make them stand out. Did the pains get worse with time? Were they sharp or burning pains? Did they come and go? Did they get better with like Motrin or did it take something stronger? Thank you again ladies for this and for what you've said already, it has taught me so much.
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I have a question...My mother in law was diagnosed with stage IV not quite a year ago...Yesterday she made the decision to be taken off of her meds. She has been fighting hard for a while, and she has decided she doesn't want to, or can't fight anymore. She has severe soars in her mouth, she is retaining a ton of fluid in her abdomen, and she has urine, ascite, and blood infections...Her potassium is high, and her calcium, magnesium, and something else are low..She stayed on her meds long enough for her preacher and her family to see her and say their peace, pray and cry with her. When she told the hospital staff to take her off her meds, they did, and they only gave her morophine from that point. She quickly became sort of comatose..not responsive, shallow breathing, etc...I held her hand and talked to her because I believe even in that state, she can hear us. When I left the hospital last night, her respiratory rate was at 10, and her BP was at 74/33....Just curious how long she can stay with us like this? She is hurting so badly, it hurts us to see her like this...Is there any way for her to pull out of this and pull through or is it past the point of a miracle? She has such striong faith, but she thought long and hard about her decision, she said she didn't want to live like this anymore, she told us if we loved her we would let her go....It's hard. The last thing we ever wanted to do was tell her goodbye...Just wondering how long she can live with such low stats? Prayers are apprecaited, as well as any insight at all....
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I'm so sorry about your mom. I The doctors will be the best ones to know how much longer she has, but even they don't really know. It sounds like your mom knows what she wants, and everyone is respecting that. They should be able to make her comfortable, at the very least.
It sounds like she has a lot of love around her, which can only help. Best wishes to you and your family during what has to be a difficult time. {{{hugs}}}
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Thank you...She was able to wake up enough this morning to tell my Father In Law that she loves him...He's hurting seeing her hurt so much...The doctors told us yesterday that she could make it until this morning, but they said she probably wouldn't make it through the night...Who knows...I'm puffy eyed and sad, but I had to come to work today when I really just want to be at the hospital for my FIL, BIL, and everyone else...But if I want to take time off for the funeral, then I have to be at work today...It's terrible, but we will make it through this and take comfort when she does leave us that she is with God and not in pain anymore...It's just so frustrating right now. Not knowing anything really, and just sitting around, not able to DO anything for her, waiting for the inevitable...Thank you for your kind words...
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mrsbmw81 - Praying for your MIL that God will wrap his arms around her and comfort her at this time. My thoughts are with you and your family at this difficult time.
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