If you are not Stage IV but have questions, you may post here
Comments
-
Muriel, I have no knowledge of what your symptoms mean, but if I had those symptoms I would think about consulting a neurologist just to make sure everything was ok in that department.
0 -
Muriel, I actually had very similar symptoms while on chemo; my vision got worse and could read large Pizza Hut sign while walking with my husband. I also had to hold on to his arm walking fast, because I was loosing balance. My onc ordered brain MRI which only showed some sinus congestion (which was causing pressure) and no mets. Those symptoms decreased a couple of months after finishing chemo.
As for pains and aches from the hormonal therapy - they are very common, however I have to say - I am one of the luckier ones that don't get bothered too much by side effects from tamoxifen, so I can't really say ....
But definitely you want additional testing to investigate the source of your symptoms.
Wishing you quick and good results!
Hugs,
Maggs
0 -
Muriel, I second a consult with a neurologist. I have all the same symptoms, mine are neouro based and have nothing to do with chemo. An MRI is a great plan and ask about the contrast with the MRI. That will show a more definitive answer.
Make sure you put in ear plugs to drown the noise of the MRI.
xoxMaureen0 -
I went in for the biopsy yesterday, got a different doctor than last week (when I had the initial ultrasound). Yesterday's doctor did another ultrasound and told me he strongly felt like there were no "masses" in the imaging to biopsy (he said he just saw fat globules) and felt it wasn't necessary. Opposite of what first doctor said last week. So I was sent on my way with instructions from 2nd doctor to follow up with my breast surgeon (who'd referred me for the ultrasound of the lumps) and that he " would probably recommend an MRI, but really there's nothing there but fat".
I'm just done with this. I don't even care what these dumb little lumps are at this point.
0 -
Kcat, as frustrating as all this is, it is much better that you follow through to find out. It's a shame that you didn't get the same doc but interesting that his opinion differed so much from the original but perhaps an MRI will give a lot more information.
Hopefully this process won't take too much longer.
Love n hugs. Chrissy
0 -
Hello-
I am writing to you because I saw my oncologist today and we discussed the problem I have had with anti-hormonal drugs. I seem to be allergic as I swell and have breathing problems on top of the typical side effects associated with the drugs. I lasted 8 months on Tamoxifen and it gave me a huge ovarian cyst and a uterine polyp as well as really terrible asthma I was on Arimidex for three months until it made my tongue swell to twice it's normal size. It's been the same story with all of them but I have managed to accumulate about 2 years on anti-hormonals.
Today, after another failure,she suggested we try something "out of the box" She wants to start me on injections of Faslodex beginning next week. We need to get approval from my insurance because it is traditionally used for Stage 4 but she thought insurance might give me a go considering my stage 3C diagnosis and 35 positive lymph nodes at surgery three years ago.
I have been reading about the drug and I am skeptical simply because the side effects seem to be the same as the other anti-hormonals only now there is injection site pain too and if I have a bad reaction, it's not like I can stop taking it since it is a long lasting injection. At the same time, I am willing to try anything if it can possibly help me. I know it would probably be more effective to post in the Faslodex thread but since I am not Stage 4, I want to respect the group and am posting here.
I would love any insight and perspective from those of you who take this drug. Is there a way i could get permission to post my question on the Faslodex thread? I really need advice and insight and i would appreciate any help. Thank you for your consideration.
0 -
Hi Chrissy, Shetland Pony, Mags09 and Chef127, Thanks to you for posting regarding my problems. I was only on femara for a short while as I went back onto Tamoxifen when I discovered that I already had osteoporosis. I have been on Tamox now for nearly 2 years. I have had 2 spells off it to see if the symptoms go away and they didn't so that has been ruled out. Regarding chemo, I had 4 cycles but that finished Oct 2014 so I doubt if that's the culprit. Chef127 I am interested in your neuro based condition? Do you mind if I ask what it is and if you want to keep it private please feel free to PM me. I don't get dizzy, just feel its a 'head' thing with my walking and the swaying seems to be when I correct myself!!!! All very bizarre and hopefully I will get some answers soon!! Thanks again. Love Muriel
0 -
Arya, I like your onc's thinking on this, and actually Faslodex -- while it does prevent estrogen from being used -- does it with an entirely different mechanism than the A/I's. So I think it would be worth a try. My other thought is, did your onc try Benedryl or other antihistamine with the A/I's? Also, as you may have read within these pages, different A/I manufacturers use different fillers, so trying more than one Arimidex/Anastrazole, etc. -- if you haven't already -- might yield success with one of those, although with the SEs you've had, I can see how you would be reluctant to try any of them again.
As far as the Faslodex thread, I can't speak for everyone, but I certainly would not have a problem with you posting. I'll go ahead and post something there about you now, and you can take it from there, if and when you want to post.
Hope this helps. Deanna
0 -
Thank you!
0 -
Muriel,
I don't want to cause you any undue anxiety. What I have is usually a 'young' persons condition. I was dx'ed at 46 but in hind sight my symptoms dated back as far as 1984 and possibly longer. I had a brain MRI for pressure in my ears and awful ringing in my ears that maybe has nothing to do with my condition??, other wise I was leading a very productive and normal professional life, but in 2009 it left me disabled. The MRI gave me a definitive dx of MS. Like I said it is rarely dx'ed in older persons. I have chosen not to take an AI or tamox for fear of increased symptoms. There is little known about it, (like most of our health issues)
I hope this is not what your dealing with. Most likely NOT.
xoxMaureen
0 -
AryaS, have you seen an allergist? I'm not at all certain there is anything he can do, but that's one stone you might not want to leave unturned.
0 -
Hi Chef127, Thank you for that. No you haven't caused me any anxiety. This has been going on for so long I will just be glad to know whats causing it. Even if it turned out to be awful, its still better to know. Thanks again. Love Muriel
0 -
Brookside, my husband and I were just talking about me seeing an allergist last night. I think that is a great idea and I am going to look into it. Thanks.
0 -
Arya, I replied to you on the Faslodex thread too, but two things: (1) I third the allergist idea. (2) Faslodex has a completely different mechanism of action from tamoxifen or AIs. They block enzymes or estrogen production. Faslodex disrupts the estrogen receptor on cells that bind to estrogen (usually ER+ cancer cells).
The "menopausal symptoms" side-effects are the same because the end result is no estrogen around, but you can see that since they act so differently, you may not have the same allergic reaction to it. No guarantees, of course.
The first set of shots only have half the effect. The normal protocol is 1 set, two weeks, set 2, then four weeks thereafter. You might want to skip the second loading dose. Shoudn't matter if it takes a while for the blood level to build. As this is a preventative you can afford to be cautious.
Pam
P.S. Take Benadryl before the shots, just in case. Oh and, often side-effects that arise the first time go away after the first few shots.
0 -
Thanks Chrissy, I'm waiting on my breast surgeon's office to call about an MRI. It's silly but I don't want to look like a hypochondriac and that's why I don't really want to push getting the MRI.
Kendra
0 -
Kendra, if pushing for something to put our minds at rest means we are hypochondriacs then we are all hypocondriacs. I doubt very much if you would be viewed that way so go ahead and push with all your might to get that peace of mind. Keeping everything crossed for you.
Love n hugs. Chrissy
0 -
I just want to hang out here in Stage IV, but it's not official yet. Both MOs think I have hidden metastases and have ordered a few more tests. I'm doing them tomorrow.
Today I'm freaked out thinking I may have found it and hoping it's anything else. My guess is liver, for all these reasons and I hope I'm wrong.
A few days ago I woke up with pain right there where my liver is, I thought I'd just slept on the remote and it might just be a bruise but the pain is still here 4 days later. I have a fatty liver, I've always thought from drinking too much wine. Could be the compression garment rolls up over my big tummy and sits there pinching me - which I have since adjusted but found no relief. It's so close to those 20 positive nodes.
I hope I'm just bruised or maybe a little touch of inflammation left over from the surgery but it's not red there like it is in the other little inflamed areas.
This sucks so bad.
I am gonna hang around after the tests for the results. The MO is across the parking lot from the testing facility and the facility always has the results in about an hour.
This sucks so bad.
0 -
Hi cb, I'm hoping for you that you got your results and they are better than you thought.
Love n hugs. Chrissy
0 -
Please help me! Back in December I had a bone scan for severe pain. I was told it came back normal. Then at my follow up last month, my onc said he wanted to repeat the scan because a tumor showed on my rib (not where I had the pain). Redid the scan, spot still there (no other spots) so he sent me for CT. Spot still showed on CT so he is sending me for a biopsy. He said it really doesn't look like cancer. But he has said that after every test. I don't know if he's just trying to keep me calm until he has confirmation that it's cancer, but secretly already knows it is. Or maybe it's really not cancer but he's just being extra cautious. I'm so freaked out, I'm imagining my child growing up with no mom, this is the worst feeling in the world.
I'm also kind of terrified of the bone biopsy itself! And what if it's negative, but a false negative? I'm so scared it will be positive!0 -
I'm a month out from completing chemo. I had a bone scan before chemo in Oct and all was clear. I've been having bone pain on and off in my right tibia and hip. Probably to soon for possible mets? Does the pain have to be consistent like 24/7 for it to be possible bone mets? Or on and off could be too? I know I have osteoarthritis in my knees and for the hip it needs to be at the joint which most times it feels like it isn't.
0 -
indenial, I'm kind of confused by the testing sequence your onc is using. I think most of us have had mets found by CT first, and if and when it's at least somewhat extensive, a bone scan is done to ascertain the degree of activity or uptake in those areas. So I'm a bit in the dark about not only using a bone scan as an initial diagnostic tool, but then repeating it for one spot that sounds like it was found (?) somehow between those bone scans (?). That said, if both a CT and bone scan revealed an area of concern, a biopsy normally is the next step, and usually much quicker and simpler than they may sound. But looking at your tx hx, it does seem unlikely you would have a bone met, especially if you are on an anti-hormonal -- which is probably why your onc isn't convinced you have a met. Has any of your blood work indicated a concern?
Artista, if you had a clear scan approx. 6 mos. ago, it's highly unlikely something would be there now and significant enough to be causing pain. Assuming you're on Tamox or an A/I, that is far more likely the cause of your hip pain. The tibia pain is something I also had post-TC chemo. It was horrible, especially at night, and lasted maybe 6 mos., during which time I found it helpful to put a pillow under that leg to help me sleep. As far as whether the pain from bone mets can come and go, yes it can. But I think many of us find that it's worse after overdoing things that probably create inflammation to those areas -- not so much just suddenly coming and going without explanation. But as said to indenial above, mets are most often ascertained via a PET (which can be hard to get authorized these days) or a CT, so that might be something to ask for if you need the peace of mind.
I hope and pray that neither one of you is truly experiencing a recurrence, but please keep us posted on what you each find out! (((Hugs))) Deanna
0 -
Artista, if it helps, your case sounds exactly like mine. I am 2 weeks past my last chemo but I have had, during chemo, and still occasionally have bone pain in my left hip and tibia. I also had a clear Pet/CT scan in early December before the start of treatment. The pain does come and go but when I have it, it can stay for weeks. I had asked my oncologist about it and she is confident that it is due to chemo, neulasta, or just exercise. Like Deanna, I would sleep with a pillow propped under my leg and it does seem to help.
Understandably, I am still concern as every ache and pain seem to bring undue amounts of distress lately. My oncologist have suggested a post chemo PET/CT to ease my mind and I think I am going to take her up on the offer. I hope you feel better soon.
0 -
Thanks Deanna and Kiks.
0 -
Thanks Deanna! My bloodwork is supposedly normal (I haven't seen the results myself so just trusting the doctor isn't leaving out important info!) I'm not sure why he did a bone scan first but I suspect it is because I had such severe pain in multiple areas (hip, back, shoulder blade). The spot on my rib was found on the first scan but for some reason he didn't tell me about it until months later when he wanted to repeat the scan? I actually stopped tamoxifen a couple months ago but apparently the spot was there while I was still on it. The biopsy is scheduled for Friday. I'm going back and forth between "terrified I'm about to die" and "I'm only stage 1 and did aggressive treatment so it's probably nothing." The stress is killing me though!
0 -
Hello ladies. I have a question regarding tests. I am a Stage IIb, but I went to my PCP (I don't currently have an oncologist.) on Monday to tell him about a pain in my spine that I have had for about three months. He ordered an MRI with no contrast, and it is scheduled for Monday, not a moment too soon. My question is about the no contrast part. Can you all think of why he might not have ordered with and without contrast? Is one more effective as a diagnostic test?
I would really appreciate any of your advice and wisdom. Thank you so much, and thank you for doing this thread at all! It is a wonderfully generous thing to do.
Whitney
0 -
Whitney, I'm not a doctor, but it seems like the reason might be because he's a PCP and doesn't normally order imaging to rule out mets. An MRI without contrast would probably show if there's a structural explanation for your back pain, but it does seem like most of the time scans for those of us w/mets are done both with and w/out contrast, so I would think (not 100% sure) the contrast would be important for ruling out mets. The other reason could be that he truly thinks there's a structural explanation, which an MRI w/out contrast should show.
Depending on how early your scan is on Monday -- if you or the facility can get ahold of your PCP before you have it -- I think you have a valid concern about the lack of contrast ordered.
Good luck, and please let us know what happens! (((Hugs))) Deanna
0 -
It seems weird to me that there's no contrast ordered. When checking on my lung nodule MO ordered both times CT with contrast. When doing the CT scan for rads, they didn't have interest in the lung nodule as the goal was prepping me for breast rad so no contrast was done. If you're going to be scanned, I wouldn't go with a pcp who isn't specialized in this. Go with what an MO says. You get radiation with scans so I wouldn't want to do it unless an MO is issuing the order cuz I'd hate to have to repeat it and get more rads because pcp didn't know.
0 -
Ok. Thanks for your input. So I've decided I'm going to call my PCP in the morning (the MRI is scheduled for 12:30) and ask him to change the order to with and without contrast. Does anyone have any ideas about what I say to him?
0 -
Without contrast is just a picture. Contrast is a dye they put through an IV that highlights specific areas of interest so more detail can be seen. I'd just say I prefer with and without contrast pictures as I know more details on the tissue can be seen with contrast.
0 -
wherria, I would start by saying something like, "I don't want to have to repeat the test again, and I'm concerned that w/out contrast, the the MRI might not provide complete enough information." If he balks, I would say, "After doing a lot of reading and speaking to others who have been in my situation, I'm under the impression the standard of care in this situation would include contrast."
Good luck!
0
