If you are not Stage IV but have questions, you may post here
Comments
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Kandy I'm so sorry that you will be joining the stage IV girls but a big welcome anyway. There are many (unfortunately) here who can and will help with information, listen to vents, offer a shoulder when you need a little or a lot of support and generally just be there for you.
As TeheelMichelle has said, if you are in pain talk to your doc as pain is not a required SE of stage IV and your doc can and will give you something to help keep you comfortable. Treatment makes you feel a little more in control but time is the best at allowing you to get your head around all that is happening.
Be assured that it is not the end of your life, just the beginning of another phase.
Love n hugs. Chrissy
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Kandy - ((hugs)) Sorry that the news isn't better. Chrissy and TeheelMichelle have given some good advice. We are all here with you to help you get through the next phase.
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Anyone suffer breathlessness after antibiotics? Mum (stage 4, brain, lung, bone, liver, 4 months off chemo, on herceptin) had another uti, has a 5 day course of strong antibiotics, but from 1 or 2 days in feels breathless. It was a little better today since she had her herceptin drip for hours so didnt move a great deal. Is this a common side effect of antibiotics? She doesn't want to ask the doc, she is so fed up of doctors appointments and being told everything is a normal side effect. Which i can fully understand. her consultant, as brilliant at his job as he may be, just seems to tell her that all her anorexia nausea etc etc is pretty standard and par for the course..
I googled the breathlessness it suggested allergic reaction to the antibiotic but not sure. She hasn't a history of reactions. So thought I would ask you ladies, you are always so helpful
I guess I worry the infection is a sign the cancer has got out of control again being off chemo, and that this could be linked to lung mets....but hoping its a SE of super strong antibiotics!? She is due to be scanned again in a few weeks, end of the month.
Any thoughts anyone?
Love and strength to you all xxx0 -
Papillon the first thing that crossed my mind when I was reading your post was allergic reaction. Her breathlessness with the antibiotics is not normal and she needs to tell her doc.
Hoping its not the mets.
Love n hugs. Chrissy
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Thanks Chrissy x
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Kandy {{{{hugs}}}}
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Hi everyone. Well, along with my mom we have another metster in the family -- though not related by blood. She was diagnosed with lung and brain mets a few months back and was told by one doctor that she would be gone by October. She had brain radiation and had been feeling great until this past few weeks. She now has blood clots in her lungs and has just started chemo -- though I don't know the specifics about the cause of the clots, whether it was the chemo or cancer. She is having a very hard time, is on full-time oxygen, and feeling like this is the end. The onc she has been seeing for treatment was a little more hopeful and is treating the cancer. That's all i really know so far. What I am wondering is if anyone with lung mets has has had blood clots and been on oxygen and then responded well to treatment. She and her family worry that this is the end because of what the original doctor said and because of the way she is feeling from the clots they don't see how things can get better. Is it possible to come back from this and still respond well to treatment?
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a levaquin or quinine antibiotic could cause chest tightness or coughing. infections in my book just mean that treatments just throw your normal body chemistry out of whack. best to you and your mom. i wasnt sure if i could post here or not, to answer a question? i know its okay to read here, and thank you to the ladies who started this thread for all of us.
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Canadagirl, no one has an expiration date stamped on them, regardless of the statistics. The MO probably was quoting statistics when the October date was mentioned. However, this does NOT apply to any single individual person - those chances are either 0% or 100% and there is not a great way to figure that out for any single individual patient.
We just lost CindyRose today, and she was given less than a few months to live about a year ago. She was able to enjoy many moments with her family, did have a few complications along the way that she was treated for, and truly "beat the odds". She used every moment she had to enjoy and love, including a new grandbaby. We are ALL going to die someday, but the docs really cannot predict reliably in many cases. It does sound like your friend/family member is very sick right now, and treatment is always tricky, but that is not to say her family should worry - that is wasted time. If you worry that the worst is coming and it happens, you have lost the time you could have had to enjoy moments in the present. Fear and worry rob us of much enjoyment of life. Keeping you all in my thoughts and sending much lovingkindness.0 -
Hi Canadagirl........so sorry to hear of your other family member and the problems she is having. I don't have lung mets but I have had a pulmonary embolism (blood clot in the lung). Do you know if she is being given a blood thinner? That is the treatment for clots regardless of causal origin and that can be anything. The oxygen will be because her lungs are impaired by both the clots and the mets and cannot oxygenate her blood well enough on their own and the chemo of course is for the cancer.
It is possible to recover even with all that but as Linda has already said, none of us know what our timeline is. Hoping your family member responds well.
Love n hugs. Chrissy0 -
Linda, I'm so sorry to hear of the passing of Cindy-Rose.......she was an extraordinary woman and will be missed by many.
Love n hugs. Chrissy0 -
I have a question:
My mom has been stage IV for some time now - 3+ years...
Bone mets, but no organs.
However, she has been having a lot of brain issues, confusion, and delusional/irrational thinking in the last few weeks, after it was discovered she had a fatty liver/fibrosis - stage II of cirrhosis, I think.
My dad is refusing to even consider hospice, which I want just so he can get some caregiver support and maybe some counseling/respite care, etc....
I said "well, dad Hospice is for terminal patients."
He got upset and said, "she's NOT terminally ill."
I mean...is she? She seems to be deteriorating slowly...and I am guessing that BC or related condition will be what kills her.
I guess I need to understand what makes someone have a terminal illness.
Can you clarify?
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Hi Jess.......so sorry you are having to watch your mom go through all this.
A terminal illness is classified as one that has no cure and will eventually cause the death of the person..............stage IV breast cancer was always regarded as a terminal illness but because of the development of the new drugs that are now available some doctors are classing bone mets in particular as a chronic disease as it is possible to live a long life with just bone mets.
If you read all the studies that have been done over the years including the recent ones, statistically MBC (Metastatic Breast Cancer) is still a terminal disease.
Hope this helps.
Love n hugs. Chrissy0 -
Ladies - please forgive me if this question has already been asked. I didn't read through all 59 (?) pages before posting here.
This is regarding the Stage IV Only threads... I would never dream of posting on those threads, as I don't believe I have a right to. Whatever I might want to say, I'm sure there is a more appropriate thread for that.
But having said that, how do you Stage IV ladies feel about non Stage IV sisters just reading your threads? Even though you may not know it's happening, would it feel like an intrusion into private thoughts?
I admit I have read Stage IV threads. I want to learn. I want to understand. I think that a Stage IV dx is a reality for any woman with BC. When I read the threads, I'm not seeking comfort, looking for worst-case scenarios, or attempting to see how I could change my life so as to not have a recurrence. I do think that's a possibility for anyone.
But I do gain understanding each time I read. It helps me in my quest to educate others who have no idea of the reality of BC. And no matter the stage, each woman is so unique in the way she lives her life after dx.
So am I trespassing by just reading Stage IV threads?
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Blessings, no one can stop you or anyone else from reading the stage IV threads and to expect that non stage IV's wouldn't read is not facing reality.........it is posting on them that does upset some stage IV women as sometimes the postings are inappropriate and that is why non stage IV's are asked not to.
These threads are in a public forum and so open to all who want to read and learn and hopefully not get too scared.
Love n hugs. Chrissy0 -
I don't know if this is really a question for this thread but here goes. After seeing the onc this week and getting an exam I started wondering how likely are we to present with new breast lumps as against mets? It seems when I have had positive nodes that being told I have no breast lumps seems not all that reassuring. Hope that made sense.0 -
Hi Kylie, yes, it made perfect sense. I'm afraid I can't give you a definitive answer but I would think the chances would be the same as if you had no nodes.
There are many who have no positive nodes and yet go on to mets and others who have nodes and yet live the rest of their lives BC free. The odds of a recurrence would be the same and as we all know there is no predictability just guesses for all of it.
Unfortunately it seems to be a day by day thing and trying to live the best way we know how.
Love n hugs. Chrissy0 -
thanks Chrissy, I understand there is no logical progression - but how likely is it to come back in the breast?0 -
Kylie, BC can recur at any time but the most likely time to recur is in the first three to five years and the likely hood of it recurring in the breast as against outside the breast is exactly the same.
I know all of this can be really confusing and being women we want definitive answers to the questions........unfortunately there are no definitive answers and in this case it leaves us hanging.
Sorry I can't be of more help.
Love n hugs. Chrissy0 -
Jess, if your mother's brain issues have only come about in the past few weeks, she may have had a TIA (mini-stroke). My SO has had several of these (he does not have cancer), with the same confusion, lack of cognitive abilities, forgetfulness, several other issues, being the symptoms. Perhaps it would benefit your mother if you contacted her primary care doctor to see if he/she would recommend a visit to a neurologist to see what is going on in her brain. My SO has had CT scans to check for bleeding inside the brain; a few times yes, a few times no. He also has had an ultrasound of his neck arteries to see that there was plaque buildup which could chip off and obstruct a bit of the blood flow in his brain. And of course several electroencephalograms (brain wave) tests. These TIAs can sometimes presage a major stroke.
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That answered perfectly Chrissy x0 -
My mother also had a TIA. She went on a trip and came back a different person. In fact, to this day, you never know how she is going to be day to day. My kids are scared of her because she can be real nice or real nasty. She doesn't have cancer. Good luck in what you find out.0 -
Kylie, my understanding is that a new cancer in the breast is different from a recurrence of the previous cancer in the breast and a regional or distant recurrence of the original cancer. As to which is more likely, I can't say. However, if you are taking your hormonal therapy, the chances of any recurrence should be greatly reduced.0 -
Good morning to everyone here!! I just want to say how thankful I am for this thread! Questions are answered and comfort is given!! Thank you, Chrissyb for starting this thread!! You take your precious time to answer every question!! You give us hope and strength to carry on!And thank you to all the wonderful ladies who post here with support as well!! Love and hugs, Kathy0 -
canadagirl, my mum also has lung mets and had clots. She didnt get as far as to need oxygen but i think the clots were found by chance during a scan so who knows what the next step would have been if not caught. As far as I know the clots and lung mets weren't related, the oncologist wasnt sure of the cause and surely if it was as obvious as the mets being the culprits, he would have said so. Mum has daily injections (blood thinners) in her stomach (at home by herself or dad) and this has cleared the clots. She was put on these injections as soon as the clots were found.
She was told she would need the injections for at least 6 months but the clots cleared much quicker than that, within a couple of weeks I think.
I googled and found that chemo seems to be one cause that is relatively common.
Wishing your family all the best. Xx0 -
Ladies, I think I need your expertise advise again. Last week was a crazy week. My PET scan was read out as highly suspicious for mets left ilium. MRI was done last Monday. That confirmed mets. It was not read out as highly suspicious or very concerning, the report said left ilium metaphysis consistent with abnormal PET. So that led me to the biopsy on Thursday. They did it by CT guidance. When he woke me up, the radiologist told me that it was a very difficult biopsy. He had a very hard time getting the needle in and at that only got a couple pieces. He stated that he hoped it was enough for them. So on Friday my oncologist called, she was ecstatic. She said the biopsy was normal, go celebrate. I was floored. I couldn't think quick enough but did get out I didn't understand that when the scans said differently. She said it was negative go celebrate. I asked her if we were going to recheck this and she said I will see you in 6 months. I think I am even more distraught. I feel like either I am a walking miracle or they missed it on the biopsy, quite honestly the latter of the 2 makes more sense. This is my field of work so I do realize that machines don't lie but there is human error. So my question to you is where do I go from here? The thought of waiting 6 months is devastating. Any advice would be greatly appreciated. Thanks ladies.0 -
so Kandy, you don't believe your doctor? Is there any way you are willing to believe what you were told?
If it continues to upset you perhaps you should make another appointment and explain your concerns so that your doctor can go over each piece of information until you are reassured.0 -
Kandy, I understand your concerns and if you are having difficulty with the verdict please go and get another opinion..........perhaps that may put your mind at ease.
It is always very difficult to get our heads around when scans seem to show one thing and a biopsy tells us another and yes, human error can come into it both in the reading of the scans and in the Lab.
Love n hugs. Chrissy0 -
Kandy - I also had a difficult biopsy (US guided) and was given the all clear, but when I questioned it ((I was awake and knew that the dr had a tough time) - they found that the dr who did the biopsy was unsure that he was able to get a good sample. A second biopsy (CT guided) did confirm mets.
I would definitely make an apt to go over the report and discuss with your doctor. It is possible that the scan picked up something unrelated to cancer. I sure hope that the biopsy can be confirmed to be correct.0 -
Well ladies, I am back. My shortness of breath, which abated, came back with a vengance. I had terrible trouble breathing and thought I was having an asthma attack last Monday at work. Had an x-ray which showed nothing alarming; CT scan that also said the same. ER doc chalked it up to anxiety and sent me home. Oncologist, who is wonderful, and has no tolerance for concerning symptoms, set up a PET for next Tuesday. She wanted me to have "piece of mind". She just called this morning after reviewing the films and tells me that there is a nodule on my lung. She wants to wait until the PET to make any definitive diagnosis, because these things can be benign and there for other reasons, but from the tone of her voice, I know what she is thinking. I'm terrified, devestated, and I can't breathe (literally. Lung mets scare the crap out of me. I have a 13 year old and a husband who lost his mom at age 3 to MBC. I feel like someones playing a cruel joke on me.0
