lilgna Posted September 24, 2004 Share Posted September 24, 2004 What are some of the unusual symptoms of brain mets that some of you have experience? Thanks..... Quote Link to comment Share on other sites More sharing options...
Carleen Posted September 24, 2004 Share Posted September 24, 2004 I'd wish I could say there were all sorts of bells and whistles that went off to warn us about my husband's brain mets, but there just weren't many symptoms. In fact, he really didn't have any other than an occassional headache which he was able to get rid of with tylenol or rest. This is why his oncologists kept saying they wouldn't do an MRI, because he did not have any symptoms and it wasn't "Standard Practice" to do MRIs just to check. But, I knew that pre-cancer, my husband never had headaches that couldn't be attributed to a night out drinking. Plus it had been 16 months since the last MRI and I really pushed and wanted one. The MRI found at least 8-13 lesions. They were all small and mostly in the membrane surrounding the brain which accounts for the lack of symptoms. I guess my new philosophy is if you have doubt, or anything out of the Norm for you, and what your body tells you is normal for you... Get a scan. Insist on it, it is your right and either way it will be for the best. Either you can catch something and treat it before it is a problem, or you put your mind at rest and stop worrying. God Bless Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted September 24, 2004 Share Posted September 24, 2004 My Mom had some odd behavior a couple months prior to diagnosing the brain mets. examples: Looking for her glass of water when she was with my Dad at a Dr. visit (she never had any water to begin with). Thinking the Dr. was going to give her a pregnancy test, really confused and disoriented, etc. asking me how old she was. Seeing things like hair in her cereal, weird stuff like that. This would come and go, shed be like this for several days, then POOF back to normal and couldnt remember acting like that (it would really freak her out when we told her). Several times we thought it was her pain med's and everything (which maybe it partly was). But just prior to going to the hospital for a brain MRI, she was having a severe unbearable headache. All the other symptoms the Dr.'s never really said what it was related to (could have been a combination?) Probibly about 3 months or so after her first episode with these symptoms, she passed away, so maybe even it was all just part of the dying process (her body shutting down?). Wish I had better answers. It was not a fun thing to go thru with my Mom. BEst of luck to all and GOD BLESS!! Quote Link to comment Share on other sites More sharing options...
jean44 Posted September 24, 2004 Share Posted September 24, 2004 While my Dad did not have any symptoms BEFORE his brains mets were found, shortly after they were discovered he did have trouble remembering what he was going to say and how to say it. He would start to respond to us and then just say "I can't remember what I was going to say". Shortly after that, his eyes bothered him. They would water alot and he would just say they hurt. Quote Link to comment Share on other sites More sharing options...
stand4hope Posted September 24, 2004 Share Posted September 24, 2004 My husband had one giant headache on the right front side. Had a CT scan of his sinuses and the ENT doc said it was because of a deviated septum (crooked nose) and wanted to do surgery. My husband told him to *!@&$, well you know. Then called his family doctor and got the MRI. That's it. No other symptoms except the headache, and I mean as far as the lung cancer, too. That's how they discovered he had lung cancer. His headache went away within 24 hours of starting decadron. I'm curious - why do you ask? Are you having some problems that are causing you to wonder if you have brain mets? If you are, then I suggest you let your your doctor know right away so you can get an MRI. Ok? Peggy Quote Link to comment Share on other sites More sharing options...
Bill Posted September 24, 2004 Share Posted September 24, 2004 Carleen from Bio : 4/6 CT scan shows that primary tumor between lungs grew from 2.2 CM to 3.3 CM ////////////////// This is what's happened to my wife. Her first 3-month check-up with CT scans shows that the primary tumor ( " in left upper lobe adjacent to the aortic arch " ) has grown larger since May - from ~ 2 cm. to 2.5 cm. Additionally, she now has numerous small spots in BOTH lungs ( rt. lung previously clear ). The only chest improvement that I see is that the radiologist's general commentary about ( mediastinal ) lymphadenopathy is better. Unless this improvement in lymphadenopathy is more important to her progress / prognosis than the other findings I don't understand why the medical oncologist ( with agreement from the rad onc ) wants to stay with the exact same chemo plan ( 28-day Gemzar 1200mg. / Carboplatin 200mg. ) for another 3 months. Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted September 24, 2004 Share Posted September 24, 2004 Bill, I don't understand either. Second opinion time? MaryAnn Quote Link to comment Share on other sites More sharing options...
TeeTaa Posted September 24, 2004 Share Posted September 24, 2004 TBone's LC diagnosis was a direct result of brain met symptoms. He started having headaches about a week before Christmas last year. He'd always had headaches, but these were different - he said it was an excruciating pain right in the middle of his head. The headache would come and go, and while he had it, he also heard strange "whirring" noises. He kept thinking something was wrong with the wheel on the car, but it wasn't - he was just hearing things. He started worrying when he began to have some numbness in his rght hand. It was odd numbness - he couldn't shake the salt shaker or hold a pen or pencil. We took him to the ER on Christmas Eve cause the headache was so bad. A CT scan revealed three brain tumors, and the ER doc said the largest one was so large that he shouldn't even be conscious. The CT scan also showed that the tumors were bleeding (it was "white" around the tumor on the scan), and the doc said the pain came when it was actually bleeding. And thus our lives changed forever . . . Praying for us all, TeeTaa Quote Link to comment Share on other sites More sharing options...
lilgna Posted September 24, 2004 Author Share Posted September 24, 2004 Thanks to all for their responses. I know I am worrying way more than I need too, But hey, we all know with this it is always something..... Quote Link to comment Share on other sites More sharing options...
TAnn Posted September 24, 2004 Share Posted September 24, 2004 Lilgna, Thank you for asking the question. I hope everything comes out ok for you. I had a brain MRI a week ago. I haven't heard anything yet. I know I should call, but right now I guess I just don't want to know. Had it done because of headaches, usually everyday, and different from the usual headaches I used to always get before cancer. I'm just thinking "no news is good news". I know it doesn't take this long to get the results and feel that my dr. would have called by now if there is a problem, unless he is on vacation or something. Maybe he is waiting for my next appt. to discuss things, which isn't until Oct. 6th. Anyway, thanks for all who posted, even though now I'm a little scared.... TAnn Quote Link to comment Share on other sites More sharing options...
Carleen Posted September 24, 2004 Share Posted September 24, 2004 Bill, I agree with Mary Ann, and I would get another opinion. How long has your wife been on the current chemo regimine? If it is anything longer than two months, and the cancer has progressed, I know our oncologist would recommend a different chemo treatment. Following Keith's progression, he had radiation done to the spots that grew because they had increased just enough to put pressure on an airway which caused a small spot of lung collapse plus they were worried it was narrowing a major blood vessel, otherwise they would have not radiated but concentrated on systemic treatment such as chemo. But, our oncologist agrees with being aggressive. If a chemo doesn't prove it's worth and either keep the cancer stable or reduce it, than it isn't the right one and it is time to try another. You need to find a doctor who is aggressive as well. One willing to try anything in their arsenol to cure your wife, whether they belive from their medical training that it is possible or not, they still need to try as hard as they can to be that one miracle. I didn't see a bio on what your wife has tried already, or what her particular cancer features are. If you want to PM me or reply, I'd be happy to research, ask questions of our onc, search the web for anything that may help. God Bless Carleen Quote Link to comment Share on other sites More sharing options...
Bill Posted September 24, 2004 Share Posted September 24, 2004 Carleen Posted: Fri Sep 24, 2004 2:26 pm Post subject: -------------------------------------------------------------------------------- Bill, I agree with Mary Ann, and I would get another opinion. How long has your wife been on the current chemo regimine? If it is anything longer than two months, and the cancer has progressed, I know our oncologist would recommend a different chemo treatment. Following Keith's progression, he had radiation done to the spots that grew because they had increased just enough to put pressure on an airway which caused a small spot of lung collapse plus they were worried it was narrowing a major blood vessel, otherwise they would have not radiated but concentrated on systemic treatment such as chemo. But, our oncologist agrees with being aggressive. If a chemo doesn't prove it's worth and either keep the cancer stable or reduce it, than it isn't the right one and it is time to try another. You need to find a doctor who is aggressive as well. One willing to try anything in their arsenol to cure your wife, whether they belive from their medical training that it is possible or not, they still need to try as hard as they can to be that one miracle. I didn't see a bio on what your wife has tried already, or what her particular cancer features are. If you want to PM me or reply, I'd be happy to research, ask questions of our onc, search the web for anything that may help. God Bless Carleen //////////////////// My wife has stage 4 NSCLC with mets to the brain, spine ( 2 surgeries ), pelvis, femors. apparently throughout most her body. This makes the update or progress report particularly difficult to interpret. At this last CT scan update ( after completion of 3 cycles of Gemzar / Carboplatin ) the medical oncologist made little mention of her lung condition. He lost me with the details but he focused on the " favorable " BONE condition and this was the basis for him deciding on 3 more months of the same TX. The rad oncologist agreed with the med oncologist's decision to stay the course for another 3 months. I'm not very happy with the reasoning because of her lung condition ( BTW, there has been a modest improvement in her lung symptoms! Go figure ! ). My wife has an appointment with all 3 of her treating physicians next week to review new MRIs of her brain and spine. I will press 2 of them ( the neurosurgeon & rad oncologist ) for a better explanation. She also continues to have persistent swelling ( with some redness ) around both eyes. Since mid-August. Started out as just a slight swelling in the upper eyelids. Now swelling around both eyes. Not getting any worse but not getting any better either. Nobody has a medical explanation that makes much sense. The med oncologist continues to blame it on some unknown allergen and he insists that it's not tumor-related and probably not drug related. She has no edema elsewhere in her body and no new symptoms. No itching or watering of the eyes. Swelling around the eyes only. I'd sure like to know what is causing this. I included the location of her primary tumor in my previous post. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted September 25, 2004 Share Posted September 25, 2004 Bill, I got to thinking....do your wife's eyelids look like this? http://health.allrefer.com/pictures-ima ... elids.html Dermatomyositis is a skin condition that has been reported as a paraneoplastic syndrome associated with lung cancer. I have personally never seen it with lung cancer but what you are describing does sound like the "heliotrope" rash around the eyelids seen in that disorder. Here's a review of it for your doctor if you ask about it: http://www.ncbi.nlm.nih.gov/entrez/quer ... s=11269538 Just a shot in the dark.... Quote Link to comment Share on other sites More sharing options...
paddy Posted September 25, 2004 Share Posted September 25, 2004 My husbands only symptoms were the sudden mild stroke. Since his radiation started he is experiencing weakness in the legs. I am not sure if this is from the brain mets or not. Paddy Quote Link to comment Share on other sites More sharing options...
Bill Posted September 25, 2004 Share Posted September 25, 2004 Thanks to all for the replies to my comments / questions concerning my wife. If you come across any further info I'd appreciate hearing about it. To Dr. Joe - my wife had a flare-up in her eye swelling last week ( for a couple of days following her 9/13 chemo tx ) which resembled the dermatitis photo that you linked me to. But, aside from that flare-up, her usual swelling & redness is less pronounced than that. She looks like she has 2 black eyes but, of course, the area of discoloration is reddish. Sometimes the discoloration does look more brownish than reddish but she has olive tone skin so I'm not sure if that would influence the color. The amount of swelling fluctuates during the day. One minute it may look reasonably good then 10 minutes later it can look terrible. It's usually worse when she first arises from sleeping or napping. The only other comment that she has made about this condition is that upon arrising ( esp. first time in the morning ) there is some eye discharge that makes her eyelids stick together. No other new symptoms or swelling elsewhere on her body that I know of. Thanks again. Quote Link to comment Share on other sites More sharing options...
Angie Posted September 26, 2004 Share Posted September 26, 2004 In mid-July my Dad was starting to get confused, but we didn't think much of it since he had received so much chemo - "chemo head", we called him. He also was sick to his stomach and lost quite a bit of weight...again we thought chemo was to blame. By the end of August, his memory was awful. We then scheduled an MRI and found out that he had 12 leasions on his brain. Well, only a few weeks have gone by and my Dad is like an Alzheimer's patient. I can't believe how fast things have progressed!! He can no longer feed himself. He doesn't know who we are (my Mom, and sisters and I). He needs "Depends" and doesn't have any sort of short term or long term memory. So my Dad, as I knew him, is gone. Hospice has been wonderful and we are doing our best to keep Dad at home. Cancer is such an awful disease. ANY symptoms, no matter how small or insignificant, should be checked out early on....such as blurred vision, nausea, vomitting, memory loss or headaches. I wish we would have tested earlier. We didn't get to complete radiation, but what he received didn't help. Quote Link to comment Share on other sites More sharing options...
SJAS Posted September 27, 2004 Share Posted September 27, 2004 I don't think my husband has ever had any symptoms of his brain mets (thank goodness!). They were there at dx, then disappeared with tx and then returned greatly multiplied - and the only way we ever knew it was from the scans. Quote Link to comment Share on other sites More sharing options...
Melinda Posted September 27, 2004 Share Posted September 27, 2004 Like Joyce and her husband Steve, the only way that we knew that Geoff's mom had brain mets was from the scans (that were done soon after her dx.). She didn't appear to have any symptoms from the mets IN her brain, itself. And the WBR worked really well on her 12+ mets. I guess each person is different--Lord knows I'm no doctor, but my uneduacted 2 cents is that if you or someone you love is dx'd with systemic disease (stage IV)--request a brain MRI aqs part of the standard work-up (just so you know if you do have mets there) and can treat any mets sooner rather than later. And if you don't have mets there--you can post immediately in the GOOD NEWS section without having to wait until after treatment! Melinda Quote Link to comment Share on other sites More sharing options...
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