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-   -   Aphasia?? First symptom brain mets??? (https://her2support.org/vbulletin/showthread.php?t=67538)

JessicaV 11-04-2018 07:18 PM

Aphasia?? First symptom brain mets???
 
Hi my kind people, Here I am again asking for your knowledge and advice. I may be worrying needlessly but I am scared stiff. I have been 4yrs NED after surgery and adjuctive chemo with TCH in 2014. I just had a repeat experience of what was called a migraine when I had similar symptoms 40 years ago. Have had about one migraine a decade, with a cluster after a whiplash injury, fixed by an osteopath who improved my posture.
Two days ago on Sat 3rd Nov, I went for a brisk walk on a hot day with my husband(yes its early summer in Western Australia.) I was mentally designing a metal mesh cage for storing next autumn's pumpkin crop. I started trying to tell him about this and my words switched around in my mouth. Couldn't say "pumpkin" it was coming out as "pumpernickle"and I couldn't stop that pesky middle syllable popping up in my 3 or 4 attempts. I then went on to try to say "I want to stop the rats eating them", but it came out "rabbits." I felt I could think clearly, just could not get it into spoken words right. My pulse was 88, and I felt quite hot and had a cap on that covered my face but not the back of my neck. I bought an orange juice at the supermarket, feeling a bit weird and freaked out. On the walk back, I pointed out that the council had been doing some controlled burning in the bush and the undergrowth was black, but this time, I had a hole in my mind where "black" should be, and the image in my imagination of the fire, so I said "red" and knew as I said it that it was wrong. This again felt like my brain was slowed down cognitively, and I was not thinking as fast as I was speaking.
Throughout this time, my husband was asking me about this "aphasia" and was clearly freaked out about it. Which added to my anxiety, though having him there was overall a relief. I told him about my migraine 40 years ago, and that I had on that occasion had a bit of numbness down one side of the face, and later up the other side of my face, and part of my vision was flickery and it felt as if someone was waving a hand in front of my eyes, but when I tried to explain it, the word "ears" came into my mouth instead of "eyes." I felt weird for a while and then a severe headache began. On that occasion I was assessed by a GP later that day who found no evidence of a stroke, and said it was probably just a migraine.
Sunday I felt a bit headachy, and then really nauseous when we went for a drive, with the sick headache hovering on for the rest of the day.
This morning, Monday, still with a slight sick headache, I saw the watering can on the floor by the toilet and told my husband the cat was trying to get past the green watering can, but there was an empty space for the word, that quickly filled with the right word, and I said "Green wheelbarrow, I mean the watering can." This again felt like my brain was slowed down cognitively, and I was not thinking as fast as I was speaking. I still have a kind of headache that is more like a lead lump on my head and very tired eyes than extremely painful. What I would call a sick headache.
My fear is that I may have a brain tumor/mets. I am afraid to speak in case I get it wrong again and it continues or gets worse Any feedback anyone?

Lucy 11-04-2018 09:48 PM

Re: Aphasia?? First symptom brain mets???
 
Jessica,

I used to have migraines every six months and some of what you described fits what I would experience. The way I would describe it to others (outside of the headache) was that it was like I was underwater trying to translate a foreign language. I had a hard time processing information from anyone talking to me and I often struggled to find the right words. Talking and carrying on a conversation with someone else took great effort and energy - I avoided it when I could. The headache would be severe enough that I would be nauseated and light was painful (for lack of a better word). They typically lasted for three days. About 25 years ago I was in a car accident and miraculously the migraines all but stopped - they come once every five to seven years now (knock wood!) and only last a day.

With the exception of the debilitating headaches, I experience some of those same things now as a result of the chemo treatments I received. Like you, the word comes out wrong and I can't fix it. I get that feeling that I'm trying to translating a foreign language while underwater because of a cognitive fog. It's frustrating. A little over a year ago I started having more frequent headaches (not migraines) and was concerned about brain mets. I discussed my concerns with my oncologist and while she didn't believe we'd find anything, she agreed to order a brain MRI. It came up clean (thankfully) and the thinking is that the headaches could be the result of some changes in the atmosphere due to Hurricane Harvey that hit last summer (around the time the headaches started).

I would recommend you discuss with your oncologist and request a brain MRI. The headaches should be a justification for the testing and will let you know either way. It could be an atmospheric change causing the issues or it could still be a cognitive issue due to treatment but having a test will let you know either way.

Good luck and let us know what you do and find out.

SoCalGal 11-05-2018 04:43 PM

Re: Aphasia?? First symptom brain mets???
 
I had an episode about 25 years ago where I woke in the middle of the night and was numb on half my body and then couldn't make the words come out right. Lonnnnng story short, including trip to ER, it was a migraine episode. It was so freaky and frightening. For years I carried a note in my wallet that said I am having a migraine attack and can't talk and need help, etc. It was when my kids were babies.

This past summer, I was having a couple migraines a week, always with the visual auras, loss of vision in one eye and then at the 20 minute mark, vision okay but headache appears. after YEARS of no migraines.

So far, not correlating with mets. That said, it's easy enough to get a brain MRI and get some peace of mind. I hope yours pass as mine finally did without much incident, now.
xxxx

JessicaV 11-06-2018 06:59 AM

Re: Aphasia?? First symptom brain mets???
 
Hi Lucy and SoCalGirl, thanks so much for sharing your experience and advice. I was thinking I really ought to go see my GP, knowing that she would probably send me to a neurologist (or maybe a gerontologist to be checked out for dementia) and these people would not know about HER2+ mets/brainal problems because this stuff we are talking about ain't mainstream commonplace medical knowledge yet. Worst scenario: I would find myself booked into a locked dementia ward within the next few months. Second worst scenario:my GP/neurologist would do the stroke tests, prove it wasn't a stroke and would not understand the risk of brain mets with HER2+, so would dismiss it as nothing and it would not get properly checked out at all.

I rang the receptionist at the "Dream Team's" rooms. My breast surgeon Peter is the husband of my oncologist Arlene, together they are the dream team. I see them alternately, him next. He will be doing a spot of general surgery for me to chop out a big fatty cyst from my scapular in Jan just after doing my next U/S and Mammogram breast check. He had said he wants an MRI before he operates.
I told the receptionist that Peter said he wanted me to have a shoulder MRI before he sees me on 3rd Jan, and that in addition I had had this frightening migraine experience over the weekend so I would like a brain MRI at the same time to make sure no brain mets. She understood and asked the right questions for me. The darling man wrote out the MRI request forms for his receptionist to fax me straight away. Didn't even insist on seeing me first. I am booked in for the MRIs on Friday at lunchtime.
I feel happy and functioning again: not in denial, nor staring death in the face, just sensibly checking out a possibility as you so wisely suggest, so I can sort it and get on. Thankyou, thankyou, thankyou. I feel overwhelming gratitude to you both for answering, and for this whole wonderful community for being there, providing this miracle that you are.

caya 11-06-2018 01:12 PM

Re: Aphasia?? First symptom brain mets???
 
Hi Jessica,


I have no experience with brain mets but I am offering support to you. Glad you have the MRIs booked for this week, the anticipation of "the worst" is gutwrenching.
Best of luck to you, keep us posted.


all the best
caya

Carol Ann 11-06-2018 08:11 PM

Re: Aphasia?? First symptom brain mets???
 
Just want to chime in saying I am here to to support. Glad you're getting in right away to get it checked out and praying its NOT mets.


Carol Ann

Cathya 11-07-2018 09:08 AM

Re: Aphasia?? First symptom brain mets???
 
Jessica;

During my chemo for my original breast cancer I had dizziness which we suspected could be brain mets. An MRI indicated that I had had a stroke at some point in my life and I was put on aspirin by a neurologist. A year or so later while walking through IKEA of all places my left arm went numb for about 10 seconds and this was followed by all the symptoms you are describing. I went to the hospital and they diagnosed a lacunar stroke (they also run in my family). All the testing proved true and I have been on medication for this ever since. I have had no episodes since and its been at least 10 years. I realized you didn't have the numb arm but all the rest certainly describes what I went through. I do think I have odd little things from it now that I think about it.....I can't understand a person talking if there's music or tv on in the background for instance.

I wish you well with your mri and hope that it's neither stroke or mets. Thinking of you.

Cathy

JessicaV 11-08-2018 06:24 AM

Re: Aphasia?? First symptom brain mets???
 
Thanks for the support and for sharing your experiences. It helps me so much. I hope this has not stirred up pain and distress for you. MRIs tomorrow now. Knowledge is power.
thanks
Jessica

Donna H 11-08-2018 01:20 PM

Re: Aphasia?? First symptom brain mets???
 
Glad you will be getting the MRI. Knowledge is a good thing - especially the knowledge that all is clear.

JessicaV 11-10-2018 05:46 AM

Re: Aphasia?? First symptom brain mets???
 
Well, I had my MRIs on Friday, nearly an hour in the machine which was tiring but at least I don't get claustrophobia :-) . Afterwards, they told me the results will be through in 2-4 business days, in other words at the end of next week. So now it's the waiting game. I am having dizzy spells, and splitting headaches, and nausea, which could as likely be from a bug or from anxiety and lack of sleep as from anything more serious. I will let you know!

Laurel 11-12-2018 04:28 PM

Re: Aphasia?? First symptom brain mets???
 
Hoping for good news, Jessica!

Becky 11-12-2018 06:27 PM

Re: Aphasia?? First symptom brain mets???
 
Crossing fingers and toes for you.

Huge hugs

tricia keegan 11-13-2018 03:09 PM

Re: Aphasia?? First symptom brain mets???
 
Coming in late here Jessica, sorry, but sending good wishes to you. I must admit your experience sounded very like a mini stroke to me rather than mets of the brain.

JessicaV 11-15-2018 04:25 AM

Re: Aphasia?? First symptom brain mets???
 
I got MRI results via the Breast Cancer Clinic receptionist who got them from the breast surgeon: all is fine. A bit more detail eg what they checked for and what they didn't check for other than brain mets. And with the shoulder, how big the lipoma is and where it goes would be nice to know. But I guess I am really pleased to know I do not have brain mets, which is the one question that was definitely answered, and I will call my GP tomorrow and ask the med centre nurse if they can send me a copy or show me a copy of the results. Thanks for your support, I feel so relieved anyway. I read some of your cancer-history tags, and am amazed that you guys are so generous with your time and help when you have dealt with/are dealing with so much worse crap than me. I am honoured to know you.

Cathya 11-15-2018 06:12 AM

Re: Aphasia?? First symptom brain mets???
 
Jessica;

So happy for your results. I will do a happy dance for you lol.

Cathy

Becky 11-15-2018 09:58 AM

Re: Aphasia?? First symptom brain mets???
 
Yes, yes, yes. So happy on your results. I get "Senior Moments" too. Chalk it up to that and distraction.

Laurel 11-15-2018 10:01 AM

Re: Aphasia?? First symptom brain mets???
 
Yea!!! Funny how with BC we are glad to learn we are having brain farts!!!!! Happy for your good news! A thankful Thanksgiving for you!

Lucy 11-15-2018 10:01 AM

Re: Aphasia?? First symptom brain mets???
 
I logged on so I could see if you posted results and if not I was going to ask if you'd heard. Glad to hear that they were good. :)

Donna H 11-15-2018 10:38 AM

Re: Aphasia?? First symptom brain mets???
 
Happy to hear the news. Happy Thanksgiving!

Carol Ann 11-15-2018 09:44 PM

Re: Aphasia?? First symptom brain mets???
 
Yay!! Wonderful news! Happy Thanksgiving!


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