Something is pressing on my III cranial nerve?

[judiek]

Hello again,

I posted last week regarding that my right pupil was smaller than the left. I decided to get an eye exam on Friday and the neuro eye doctor came in. He told me that it's my left pupil that is bigger than the right. He then proceeded to tell me that "something is pressing on my III cranial nerve". My onc called me yesterday to tell me he was ordering the MRI and that this latest finding is worrisome. I asked him what else it could be and I didn't really get an answer. I have had mets to lungs/liver since Jan of 2004.

He did tell me that my chest is stable except for a bit more effusion around the pericardium. He can't compare the liver until her gets the one with contrast from Boston (ER last weekend) I'm praying that I'm still stable there too of course.

As I said last week, I am her2 negative but have read the posts on this board many times. I know there are many of you that have had brain mets. I know that I'm getting ahead of myself but this pupil has me freaked out and thinking the worst.

Has anyone ever had this happen and it wasn't a met on the nerve? My ct was negative so if it turns up as mets they should be small and I'm praying that I have other options than just WBR...or is WBR routine with gamma and stereoactic. Thanks for any thoughts and input.

Yesterday was the first day I didn't have a headache in a week...but it's back again today

Warmly,

Judiek

History

Discovered lump Sept. 2002 (mammo didn’t pick it up).

Had 3 mammo’s in my 30's...not to sure mammo’s did me any good.

Dx Oct 2002-just turned 41.

IDC and pagets disease, stage 2B, grade 3/3, nottingham scale 9/9.

3cm, lumpectomy,clean margins.

er/pr-pos, her2 neg, 2/25 nodes..

Nov 2002-March 2003-FEC (5fu, epirubicin, cytoxen).

March 2003- started tamoxifen.

May 2003- finished rads (33tx).

June 2003-CT/PET Scan- clear.

Started 3 month check ups w/lab.

July 2003-Lost my brother.

Dec 2003-complete hysterectomy/lost my father 4 days later.

Jan 2004-extensive mets, both lungs & liver, pleural effusion(labs normal)stopped tamoxifen .

Feb 23, 2004-CLINICAL TRIAL AVASTIN/TAXOL.

April 27th, 2005-DONE WITH AVASTIN/TAXOL...PROGRESSION.

15 months on trial which made my 5 lung nodules disappear/started with 9 liver nodules...now have 4 left -Progression was small pleural effusion around lung, heart and some slightly enlarged nodes in chest and abdomen.

May 6,- Sept. 14th, 20005-ARIMIDEX...didn’t work.

Sept 14, Progression to lungs and liver again...looking for another trial.

Oct 5, 2005-Started another clinical trial...XELODA and TIPIFARNIB...CEA now 15.0

Dec 1, 2005-Progression to lungs and liver again...OFF XELODA/TIPIFARNIB trial .

Dec 27, 2005-Started NAVELBINE

Dec 29-31, 2005-Hospitalized to drain 2 liters off right lung lining.

Jan 10-15th, 2006-Hospitalized to drain 2 more liters and dangerously low counts/ Lost my MIL.

Jan 24, 2006-Last tx of NAVELBINE...symptoms worsening

Jan 31, 2006-Started GEMZAR @25% reduction. CEA is @37.0

March 16, 2006-Ct showed significant improvement in chest and liver! Tm’s coming down.

June 19, 2006-CEA @3.4 and CA27.29 is 15.8!!

WE NEED A CURE

[Unregistered]

Judiek;

Have you ever tried the Bayer Serum Her2 test? Your tumor certainly seems very aggressive and I am just wondering as....let me quote Dr. Carney:

Studies have now shown that 10-40% or metastatic breast cancer patients with a negative IHC or FISH test can have an elevated serum HER-2/neu in metastatic breast cancer. As you know, patients negative by tissue testing can't receive Herceptin. The serum HER-2/neu test is not approved to select patients for Herceptin. However, if patient has an elevated serum HER-2/neu then they should have their original primary tumor re-evaluated by the approved IHC or FISH test to see if the tumor is HER-2/neu positive. If the tumor is negative or not available you should discuss with your oncologist testing a metastatic lesion for HER-2/neu positivity by IHC or FISH. If positive, then the patient can be eligble for Herceptin, if the Oncologist recommends it. Once again, the serum HER-2/neu test is not approved for selecting patients for Herceptin but can provide guidance back to the approved tissue tests.

Your have certainly been through an awful lot. God bless.

Cathy

[karenann]

Hi Judiek,

When I read your post, it reminded me of my aunt (had bc mets) and how she woke up one morning and her one eye was crossed. They did a brain MRI and it was clear. They could never figure out why it happened.

So, maybe your dilated pupil is something other than cancer. Maybe one of your nerves is inflammed from some of the chemo you have taken. Have you been on Taxol? That drug can cause problems with nerves (ocular nerves in particular). Also, what about Horner's syndrome (I think that is right)...Horner's syndrome can cause one pupil to be more dilated than the other.

There are many reasons for a dilated pupil, including an idiopathic condition like my aunt had.

I hope this helps.

Karen

[al from Canada]

and is probably the best advice for you at this time...... we all know cancer is very sneaky and always seems to have a plan "B", meaning it seems to change pathways such as HER2, E, VGEF, EGFR, etc. Even the triple negative cancers have some kind of pathway.... still unknown so far. This thing does not follow the rules and if you have a stubborn tumor, get the molecular / proliferation profile done so you can target the therapy. As Cathy so wisely suggested, the HER2 serum test is one and probably one of the least invasive. Another way is try different targetted drugs, if your doctor's progressive. For example, taking tarceva or iressa will first cause rashes and then tumor shrinkage, if you are HER1 +, the more the rash, the stronger HER1+ the better the drug. The problem is that many oncs, will stop all treatments rather than attempt an innovative salvage regimes. The trick is to get the pathways re-tested as soon as and however possible.
Good luck,
Al

[judiek]

Thank you for your response to my cranial nerve question. This is why I love this board...so much knowledge. I did have the MRI this afternoon and of course I am reading into a comment that was made. The tech came out to give me copies of the MRI...she told me to hold unto these because my doctor will be referring me onto someone else! It will cost me $13.00 a page to get another set...hmm...why will he be referring me on...sigh!

I should have the results in a day or two and will let you know. I was told it isn't horners syndrome. Also, I did do taxol for 15 months...maybe it's from that. I will also look into be retested using the FISH...last time was 2 1/2 years ago. I also have been looking into a trial using Doxil and Iressa.

Thanks again for all the great info.

Warmly,

Judiek

[karenann]

Why do techs do that? When I got my bone scan the tech was very friendly when I went in, but when it was over she got very serious and of course, made me worry. In the end, it was all over nothing... the bone scan was clear.

My thoughts and prayers are with you.

Oh, if you do get tested for Her2, make sure it is the fish test.

Hugs,

Karen