brain mets only after other mets?

Patricia · 06-02-2007, 08:21 PM

Is it true that most people have had other mets before getting brain mets? Is there anyone on the board that has had brain mets that did not have any other mets?

Hugs,
Patricia

Barbara2 · 06-02-2007, 09:40 PM

A friend of mine with Her2+ breast cancer has had brain mets and not any other mets. It was one large met, removed surgically, followed by WBR. That occured about 14 months ago. She is doing well. She was in a Herceptin trial in 2002; recurrence to brain 2006.

R.B. · 06-03-2007, 02:58 AM

I have posted on this subject on a number of occasions.

I have a desire to "scream" this is a simple way that on the balance of probabilities most can reduce their risk exposure.

Your brain is 60% plus fats.

Not enough DHA and your brain does not function properly, repair process fail etc.

I have seen several suggestions that tumours when examined show higher omega six and lower three than healthy brains.

Here is another link saying omega six bad omega three good.

Please see the other posts on omega six and three for a wider view point.

Please discuss dietary change with your adviser.

RB

http://www.jlr.org/cgi/content/full/46/6/1278

"This suggests concrete mechanisms by which {omega}-3 PUFAs could affect carcinogenic risk. Although the relationship between dietary {omega}-3 PUFAs and carcinogenic risk factors is inconclusive, the overwhelming evidence offered by our work and the investigative work of others suggests that increasing dietary {omega}-3 PUFAs is beneficial."

"Taken together, these results indicate that {omega}-3 PUFA regulate COX-2-mediated invasion in brain-metastatic melanoma."

pattyz · 06-03-2007, 09:16 AM

I have seen a single case on another board of mets to brain only. So, it is possible I presume. But, I think yes is the generalized answer to your question.

My other mets were minimal: mediastinal node/s with unconfirmed spots on lung and pelvis just prior to brain mets dx. Since one of my first two tumors was 1.5cm, I think it is safe to say that it was present at that very first dx of mets, two months prior to brain MRi.

I've remained NED in body for coming up on five yrs, without any systemic treatment. Altho' I guess you could say that Xeldoa (for latest brain mets) for near two yrs could be a contibuting factor at this point. Just don't know.

Warmly,
pattyz

dchips1 · 06-03-2007, 09:47 AM

I was originally dx with liver and pelvis bone mets. They are gone since Aug 06, Brain mets was dx 2/06 6 spots, now down to 1. Other than that from the neck down no cancer at this time.
Peace Darita

Andrea Barnett Budin · 06-03-2007, 12:30 PM

Thanks so very much for a comprehensive heads up on the Omegas. Very edifying! I think what I meant to say re brain mets is that my onc said if you've already had a met, it's unlikely (not a sure thing) that you will get brain mets. They generally appear as yr 1st met. Again, many exceptions no doubt. But for me that news was a tad reassuring. Then a friend who had a met into liver, like me, had brain mets. So I'm back to that being my worst nightmare. There I go again FEARING, which I recommend totally as being nothing more than defeating. I know this, yet my mind wanders into that scary place every so often. As I said, my onc, having seen 3 brain mets in the last wk is now recommending ev 6 mnth brain MRIs. And I'm "due".

Last one my insur co denied WITH contrast, saying they'd pay for without -- and IF they found something they'd pay for WITH. So the report said they saw nothing but that it is extremely difficult to read without contrast! I asked my onc if we should fight this (last yr) and he had this defeatist attitude, saying it was a catch 22. I felt aggravated, forever angry w/my insur co, but grateful they do not bother me about Herceptin (since '99). Am wondering -- I'm now 62 -- does Medicare give problems w/longterm Herceptin. A thought that comes into my sphere of awareness from time to time, yrs early, but wondering. ANYONE KNOW ANYTHING ABOUT THIS TROUBLESOME ISSUE????? Sending loving energy to all my Soul Sisters... ANDI

Patricia · 06-03-2007, 08:59 PM

Thanks to those that have replied. I was dx stage 1c, grade 3 and feel blessed to not have had any recurrences. I am worried because I have been feeling dizzy for the last 3 weeks though and am a little unsteady on my feet (the unsteadiness has been the case since after surgery in 2005). The dizziness is wierd, it is not naseua, and it is not constant. It comes and goes in jolts and sometimes it stays for up to an hour or so and then is gone, but i feel it at least 1/day if not more.

I am also on synthroid since I had my thyroid out and the pharmacy gave me a generic without telling me about 2 weeks prior to the dizziness. They tell you for thyroid in particular to not take a generic without talking to your endocrinologist so I know that it changes the way it interacts with you. I am hoping that now that i am back on the synthroid specifically the dizziness will go away.

When I spoke to my onc last week he said he did not think it would be caused by the change in the thyroid drugs and he said to call him if the dizziness gets worse and he would order a brain scan. I thought I saw someone post something that it in the majority of cases people had other mets before their brain mets, so I was really just posing that question more formally. I was looking to see if there are any others on the board with an early stage like mine that then found brain mets without 1st finding other mets.

Thanks again for the replies.
Hugs,
Patricia

chrisy · 06-03-2007, 09:50 PM

Patricia,

Christine Druther, founder of this site, had brain as first site of mets.

StephN · 06-03-2007, 11:35 PM

Hi -

there is a woman from New York who has posted here in the past who had brain as her first site for mets. She had one and then a while later a couple more. She has been treated and seems to be a success last time we heard from her. I think her brain mets appeared one at a time.

Maybe you could search for Annemarie, I think?

logancounty · 06-04-2007, 08:14 PM

I was just dx with a single large lesion to the brain in May. I had been stage 3b at original dx in 2003. Had no problems till this spring when I started having weird head rushes and neck pains. Thought they were sinus since my family has chronic sinus issues. Had the MRI and found the mass. Tumor Markers were only at 68 which my onc thought might indicate that it has actually been there awhile, but a brain scan was never done in 4 years of treatment. Just finished whole brain radiation which was very hard. Just glad its done. Now we wait and see if it has shrunk enough to consider radiosurgery later this summer. Am about to start Tykerb which I am scared as all get out to start but ya gotta do what ya gotta do!!

Patricia · 06-04-2007, 09:25 PM

Thanks Chrisy and Stephanie for the leads with Christine and Annemarie.

Hi Logancounty,
Can you describe your 'wierd head rush'? The dizziness I have been experiencing is a little wierd too. It is almost like a rush of electricity, but it is light headedness/dizziness and sometimes it goes as fast as it comes, just like a jolt or a wave. Othertimes I can feel dizzy for up to 30 mins to an hour and then it goes away again. Was yours anything like this? I have been having a lot of pain in my neck and mild headaches and my massage therapist convinced me to come every 2 weeks for awhile to try to work it out as she said, 'what is going on back here!?'. I used to get a lot of headaches prior to cancer and then had none during a whole year and half of treatment until just recently when they have come back on and off.

I am sure it is probably non-cancer stuff, but I know you all can relate to the wandering worries/fear factor. I never seem to think of non-cancer issues first anymore and am really trying to 'chill' about this one. I am tired of going to the onc and him doing tests only for them to come out perfectly fine(dont get me wrong - I am VERY grateful :-)) and then i feel like a hypochondriac. I am trying to keep it in perspective that I am an early stage and have not had any other mets and it is most likely something simple.

Hugs,
Patricia

Lala · 06-05-2007, 08:02 AM

Patricia
Hello I am sorry you are having these issues.
I hope that you get a Brain MRI and I would consider an upper Spine MRI or Cat scan of the neck based on your pain in the neck. Also tumor markers could be done but remember sometimes these are not accurate. I would not wait for the dizziness to increase. I think that it is best to quickly address symptoms of headaches, dizziness and pain. The only way to rule out brain mets is to have the scan.

When in doubt check it out. It's better to catch mets early than later. This may be related to something else of course but why risk it.

Hugs to you