If you are not Stage IV but have questions, you may post here
Comments
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Is it possible to have bone mets but have a normal serum calcium/alk phos
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rleepac, that's an excellent question. I would think if someone's mets were extremely limited -- like one or two very small lesions -- it may not show up in those readings, or cause them to rise so slightly that they're still within normal range. I'm saying that b'cuz there are those with very limited bone mets who have TMs that are still in the normal range, or fall to the normal range very quickly with tx. But this is just a guess, and I could be wrong. I do believe it would not be possible to have extensive bone mets and not have those readings affected.
Hopefully, Chrissy or someone with real medical expertise will also weigh in. But that's just my impression -- that there's a very wide range of bone mets, and I would think one tiny met or two could exist w/out affecting those readings. Deanna
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That makes sense. I know you have to look at the whole picture but I heard an MO who basically said if the calcium and alk phos are normal then there aren't bone mets. I thought it was a rather broad statement but if that were the case why do so many scans get ordered? I guess that's sort of a rhetorical question but the MOs statement just sort of rubbed me wrong. I just didn't know if anyone herehas had the experience of having normal labs but positive for bone mets.
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rleepac, docs more often than not follow trends in blood tests rather than the number if the numbers are still within what is considered the normal range. If the numbers are rising steadily (but still within the normal range) scans would be ordered as a safety check.
The statement that you overheard that onc make would make me not choose him as my treating doc.......a little too ridgid in his thinking.
Love n hugs. Chrissy
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my mum has pleural effusion, just had 3 liters drawn off. Do medics always test the liquid for malignancy? Does it even matter? She is already taking tdm1 to try and shrink the masses in her lungs.
She is very weak - hospital makes her worse - why is it so noisy?! She struggles to sleepwell despite incr single fatigue.
She also has a collapsed upper lobe because of a tumour.
It's not been an easy start to the year that's for sure...
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Hello Chrissy and anyone else.
I have had diarrhea for 10 days with some vomiting although that has stopped now. I saw my GP and he asked I provide a sample and then gave me rehydration sachets and loperamide capsules. I stopped the capsules for a day or 2 to see if I was better but unfortunately not. I am literally going to the loo at least once an hour. I have a massively diminished appetite also.
I am a Coeliac and do not recall eating gluten which could be giving me the above symptoms, but I am pretty sure I have not, as I tend to have other symptoms alongside the tummy issues but I don't.
Can this be a sign of seondary cancer for example in the liver?
I am panicking right now, not least because I have a new job starting Weds and I just don't see how I can go like this. Also that there might be something serious going on.
I would be grateful for any advice as to this being symptomatic of secondaries..
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I have never heard of diarrhea being a symptom of metastasis, especially without other symptoms. If there were mets in the stomach or something, there would be pain and other symptoms. I have liver mets and have researched what happens at the end stages, when the liver is really messed up, and diarrhea is not on the list. Hopefully your doctor will get back to you about the sample, it's more likely you got some kind of norovirus or something like that. Definitely let your doc know it's still happening and I would ask about taking probiotics, too. Be sure to keep hydrated!
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wintersocks, you must be miserable, dealing with the big "D" for 10 days now. Actually, the first thing that came to mind when I just read your post isn't mets, but Norovirus. Have you been checked for that? Here are a couple of pertinent links:
https://en.wikipedia.org/wiki/Norovirus
http://www.cdc.gov/norovirus/about/transmission.ht...
Hope that's what it is, and if so, you need more than a diarrhea med, you probably need a strong antibiotic. Did your GP mention the possibility of Norovirus? Deanna
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dbla, yes I am very miserable and getting upset now.. I did look up Norovirus and it seems to last only 3 or 4 days, quite short lived, but at 10 days and no improvement - I am thinking it can't be that. You know where our minds go when something is not resolving.....My GP did not say much just gave meds including one that stops vomiting, but he did give me an exam.
petjunkie, thanks for that info, yes I am keeping hydrated, but as soon as I drink or shortly after I need the loo.... (TMI!) Thanks for reassurances too.
Thanks
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Hi Ladies,
I get my defibrillator tomorrow morning. My ejection fraction now is 25% and am very scared if my cancer comes back. Will I be able to take any chemo? My heart failure is chemo induced.
Thank you
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Michelle,
You have a hormone positive pathology, so you are a candidate for all of the hormone suppressive therapies (Tamoxifen, Arimidex, Femara,, Faslodex, etc). Also, you can use any of the targeted therapies, Afinitor and Ibrance. None of those are cytoxic, so they should be available to you. But, I am not a doctor, so if it will make you feel better, ask your Oncologist at your next appointment. You are going for annuals, right?
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I may be joining you ladies soon. I saw my Oncologist on Monday and the results of my PET scan were not great. I knew my cancer was in my lymph nodes, but it seems it has gone much further than just the nodes in the axilla, it might be in the nodes around the mediastinum, but they also found a nodule in my lungs. The nodule itself is larger than my dang tumor. I have to have another biopsy, this time of my lung, and I am hoping it is Valley Fever. The Dr. does believe it could be valley fever but the fear is there that it is not. I am 37 with 4 kids, my youngest being only 6. I am a full time nursing student and all I have ever wanted to do is help other people, not depend on others for help for myself. Its just frustrating and scary to not have the exact answers I want and need right now. So my question is, I know everyone is stage 4 has been through the emotional ups and downs of this disease, at the diagnosis, I was totally fine and comfortable knowing I would beat this, now I know I won't beat it if it is in my lungs, but I know I can live a while with treatment, so how did you do that and still be strong for your family and still find it was worth it to continue with the things in life that make you happy?
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Oh yes, I see my onc every 6 weeks. I also see a cardio, gastro, and endo.
Thank you Jennifer
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phrogger, I'm so sorry about the worry and scare you're going through. Hopefully, whatever is in your lung is something other than mets, which is not an uncommon situation. You already know about valley fever, and any illness involving your lungs (i.e. pneumonia, severe bronchitis, etc.) can leave scars that sometimes are too quickly assumed to be mets. So unless and until proven otherwise, let's hope it's not mbc.
As far as how you go on, I can share a few thoughts with you... First, even with lung mets, many women do very well for a very long time. There are a plethora of txs out there, and you just have to hope and pray that if you have mets, you will respond well to those txs. There are also new things coming along all the time -- meds that make the current stats pretty outdated. And there are more in the pipeline that make me very hopeful. My best advice if it turns out you are dealing with the worse case scenario (which I hope and pray you're not!), is -- if you're not already at one of the major university comprehensive cancer centers, at least go to one for a second opinion. As excellent as many, many local oncs are, most of them are general oncologists and this is a case where you really need to be sure you're getting a treatment recommendation from someone who specializes in breast cancer, so is truly up on the very latest txs and trials, as well as treats enough mbc patients to have a lot of experience with patients very similar to you. You can always take the information they give you back to a local onc (that's what I do) for monthly follow up, if you aren't close to one of the larger facilities.
Those are a few thoughts off the top of my head. Of course, the fact that you have 4 children has got to be the best motivation there is for hope. And if you haven't come across it yet, be sure to check out a very positive thread here entitled, Life Doesn't End With A Stage IV Diagnosis (Really!). Here's a link: https://community.breastcancer.org/forum/8/topics/.... Also one called Tips For Fighting The Dark Clouds, here: https://community.breastcancer.org/forum/8/topics/...
Please keep us posted on your situation! (((Hugs))) Deanna
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Thank you Deanna, I will look into possible second opinions. I live in Central CA and while there aren't any top notch medical schools here, my oncologist seems to be one of those guys who is just on top of everything. He is a breast specialist and I am fairly lucky that my nursing school instructor, she was the former breast cancer coordinating nurse for the largest breast cancer facility in all of central CA. (so figure from northern LA to San Francisco) and she hand picked this oncologist for me. So I do at least have great confidence in him, but it never hurts to get another opinion and one of the first things he said to me was I will send you anywhere you want to get a second opinion.
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That's the sign of a very good doc -- one who not only isn't afraid of losing a patient, but who welcomes added input on a patient's situation!
I'll share a funny story about second opinions. When I was first dx'd back in 2008 and told my then-surgeon (I live in the desert) that I was going to UCLA for a second opinion, but that I would be back -- which I absolutely believed and meant at the time -- until UCLA found things that she had missed. Anyway, her response was, "That's what everyone says, but they never do." Ha! Clearly, that spoke volumes about what others were finding was a difference in care!
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HAHA that is pretty funny. He said to me "I am sure they will tell you the exact same thing I am saying, however, it is important for YOU to be comfortable with all of this". That made me feel good.
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Phrogger, I sincerely hope you will have no reason to join the stage iv forum. Everything dlb said. Whatever the results of your biopsy, you can use this experience to be a nurse who really gets it, and you will help your patients even more.
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Well, hi everyone. I'm from the 2014 August Chemo group.
Having milld low back pain, on left side, opposite of where cancer was. I had a CPR with chemo/herceptin which ended in July 2015, rads and the wonderful double BMX too.
This seems like a pain I've had before, in the same place. It has come and gone and I remember having it on the day of my bone scan and feeling certain it was mets then. But the scan was clear. Feels like a strained muscle. I have not done anything to strain it-- always had a tight left hip, and chemo exacerbated the joint pain, as has Tamoxifen. I also can blame Tamoxifen for my foot pain and other joint pains, which all come and go. Feels like arthritis. So maybe, I should not waste time worrying and say F**K it, like before.
I see my onco on Monday for a regular checkup..so I guess we will go get a scan or two after I tell her this news. Double *&ck, I say. Trying to work but my concentration is shot. Took a Midol and it's working but pain still there.
So I am not asking for it to be okay, because either it will or won't be. Just any practical advice would be appreciated from those that have been there. It's my first mets scare. I am feeling that old familiar dread and it's so difficult to even think about having more tx. Thanks all.
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Hi!
Every now and then (maybe a few times a week), it seems like my chest seizes up. It feels like a cramp, but it is hard to breathe while it is happening. If I relax and stretch, it goes away. I wonder if I've done something to myself while swimming. But, the possibility of lung mets is there as well. If anyone has lung mets, what did your symptoms (if any) feel like? Thanks for any insights anyone can give me.
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Bippy, the mild lower back pain you're describing could be due to so many things, maybe exacerbated by the Tamox. Have you had a DEXA scan recently, to see if you're dealing with osteopenia or anything like that? And have you thought about lifestyle stuff, like sitting too much and/or maybe not getting enough exercise and losing core strength? Since you had the pain prior to starting Tamox, it doesn't sound like it's totally that. And if you had it when you had a PET Scan in the past (was that prior to starting chemo?) and nothing was seen then, I doubt anything's changed significantly since you were on chemo. And I would think if it was mets, it would have gotten worse by now. So sorry you're dealing with this -- and yes, it's very hard not to let your mind go to the worse case scenario. But if it doesn't resolve and you can't think of any other logical reason for it, another scan would at least put your mind at ease.
Elaine, I don't have lung mets, but what you're describing makes me think more of some sort of heart irregularity, rather than lung mets. Has your onc kept an eye on your heart since you were on Herceptin and Perjeta? I'm not a doctor, but I know from reading that sometimes heart issues can appear months or years after tx. I think the lack of estrogen from any A/I can also cause heart fluctuations. It's great that you're swimming, and if you're swimming hard, I suppose you could have injured something. Hopefully it's not anything serious, but I would absolutely let your onc know what you're experiencing.
(((Hugs))) to you both, and please let us know what you find out. Deanna
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ElaineTherese,
You might want to have your onc refer you to a cardiologist. He/she can order an echocardiogram. I see you had the same chemo as I. My problems started 2 months after rads. Hope you can get it figured out.
Michele
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DLB and Michele,
Thanks for your insights! I had my last MUGA scan in December, and it showed that my heart was still functioning normally. But, if heart problems can crop up at any time, that could be it. I will ask MO about it at my next appointment.
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Hi ElaineTherese.
I finished my radiation 3 years ago, as you can see from my treatment details.
I definitely get bad cramps occasionally along my left side (radiated side) which spread across my chest. I notice you mention the pain seems like cramp, that's why I mention it. Mine is definitely cramp as if I relax and stretch the area i.e. stretching up my left arm, the cramp goes away.
By all means do get it checked out but I just thought you might like to know I get what seems to sound like the same kind of pain across my chest and it definitely is cramp.
Remember that after surgery, not to mention radiation, the muscles are shorter and compromised.
Good luck and let us know the outcome.
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goodprognosis -- Yes! If I stretch, the cramp goes away! That might be it. It happens maybe a few times a week, but I found it alarming because the cramping is in my chest.
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I would still get it checked out by one of your medical team. A few times a week sounds like a lot for this to happen...
Best of luck
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Thanks for that kayb. I will be back to see my PT soon - lower back spondylosis. I will be sure to ask about it and see if she can give me some special exercises.
Thanks again.
GP
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thanks DLB! feels better but comes and goes. never had a PET scan, but all others were clear before chemo...
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Jumpship ~ So sorry about the pain you've been experiencing. Bone mets can start anywhere, but my first thought is, are you on Tamoxifen or an aromatese inhibitor, because those are more often the culprit. I doubt very much you'd be walking around pain free during the day and would only hurt when you're lying flat if you had untreated bone mets going on for awhile. But as you said, not sleeping well for many months isn't good for your health either, so I think some sort of imaging is probably in order to get to the bottom of it -- maybe an MRI, rather than being exposed to the rads from a CT or PET. An MRI should show if there's a skeletal irregularity that's causing your pain.
Good luck, and let us know what you find out. Deanna
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Hi ladies. My mom had a stage 4 recurrence in 2014. She went on taxotere, herception and perjeta for 6 months. In January of 2015 she was NED. She continued herceptin and perjeta until August of 2015. Her onc took her off of all meds and said he wanted to "see" what would happen. She is still NED as of January 2016 on zero meds. Her onc wants her to think about whether she wants to be on herceptin indefinitely as a precautionary measure. What are your opinions? I think she should do it. The stage IV came back in such a sneaky and unexpected way and her prognosis was very poor at the time. If her chemo had been unsuccessful with the type of mets she had she'd have been gone in 6 months according to her onc. I guess I just worry that since the cancer came back despite successful treatment of her early stage cancer that it is bound to come back...but I don't know and I can't seem to find much info. Her cancer is HER2+, ER- PR-.0
