Mom dx with brain mets - WBR/Xeloda/Tykerb advice

mimi1030

Hello There,

My mom and I are not new to the boards, 2 and a hlaf years ago she went from DCIS, Stage 1 IDC - 4mm, Her2+++, mastectomy and A/C to Stage 4 with mets to liver and bones, Taxol and Herceptin which cleared her scans by her 3 month check up.  It turns out the bones were not effected.  Last Friday she had a craniotomy to biopsy lesion in brain as the liver biopsy showed no cancer there, so they had to know what they saw on MRI was infact brain mets.  It was confirmed brain mets.  She has about 10 lesions.  The largest at 1.5cm was removed from the frontal lobe and there are 2 around the 1cm mark on the Pons and Basal Ganglia.  The remaining lesions are white specks on cerebellum and cerebrum too small to measure.  She has no symptoms.

My mom has to begin WBR next week after they remove the stitches from her head and she picks up her Xeloda and Tykerb today. 

Does anyone have any experiences with this, I know the founder of this board dealt with brain mets and would love to hear her story if anyone knows it.  Also people who have used the drug combo so that I can get a head start on any tips to prevent her from getting sick.  From what I have read she will not get sick per se, not like she was on the A/C that stuff put her on her back for 3 months, vomitting, nausea.  I am not sure she could stand all that again, she did weekly taxol and herceptin and she had no issues what so ever with that, she was still able to exercise and do her daily activities.

Thank you so much for all your help!

Hugs to you all Michelle xxxx

mimi1030

Hi Sassa,

Well, my mom is her2 and I wasn't aware that the Her2 board is only for those who are NOT Stage IV.  I have been on the Stage IV boards for 2 and a half years and I have already posted over there, I was advised by a recently diagnosed Stage IV, Her2 person to post here because mom is her2 and there are women on the Her2 board who are stage IV with brain mets and I guess she thought that I could be helped over here too, I am looking for help for my mom with her new treatment and so I am willing to post it were ever I need to to get some advice.

Thanks for your help.

Michelle

chainsawz

Hi Michelle! - this Her2+ forum is for all stages and we all post over here - Sassa probably didn't realize you already posted on the stage IV forum and were directed here for additional help :> 

The woman you are referring to in your post is the founder of the site http://her2support.org/ (Christine H. Druther) is the one who had WBR and herceptin 10 years ago...amazing!!  I don't think she posts on this website, but she did respond to one of my posts on another.  I would try to contact her on the site I listed above and see if you can get more details.  There is also great tips and info on her2support.org.  I don't participate on that site, but I do read many of the posts so I am sure you will get some good help there, too! 

Many on this her2+ forum take tykerb and you can get tips from the posts here.  Also, there is another post here about this combo:  Tykerb and Xeloda, give me the low down, please!!  Here's the link: http://community.breastcancer.org/forum/80/topic/745789?page=1#idx_13

We are all here for you - I know this has to be such a hard journey :<   xx00xx lisa

chainsawz

Michelle - I found this post by member vhqh which gives some details about WBR - maybe some good info on tykerb\xeloda will follow :>

Topic: More brain lesions found   Posted on: Oct 12, 2009 10:40 am

Oct 18, 2009 03:59 pm vhqh wrote:

I had too many brain mets to count, WBR was the only option given.  There is a mask you wear, it is a plastic mesh that is heated and then pressed down over your face.  During tx this mask will be bolted down to the table to keep your head still.  Each tx does not last long, I was out the front door about 15 minutes after walking in. I had 20 tx and 5 boosts, I had just completed radiation to the mastectomy sight and they wanted to take it slowly.  One thing to be ready for, I saw a flash of blue light and experienced a chlorine smell with each zap.

IDC, er+/pr +, her2 +++, stage IV

mimi1030

Hi Lisa,

Thank you for the tips.  Mom is claustrophobic too, so I know the mask is going to freak her out somewhat as well.  She can't even get in the MRI machine without valium.  So hopefully the zaps take very little time.  I went over to the brainmetsbc.org website and was amazed to hear how well the ladies are doing.  However, I guess you can't actually post there like you can here, or I was missing something and didn't see how to do it.

I called my mom's doctor who she will be seeing today and told them that she is terrified he is going to put an expiration date on her, I told them that I told her she doesn't have one and that I assured her that is not what he will be talking about at all.  He is there to give you your treatment plan and course of action and that is it.  He is not God, just the doctor and so I told her not to panic too much.  But hey, I can honestly say I would do the exact same thing myself. 

I figure that rads might last about 2-3 weeks depending on what the doc thinks.  I just hope she doesn't get sick to her stomach that is the only part she hates is the sick feeling so she can't eat.  Fingers crossed that doesn't happen.

Lisa did you have Stage 1 originally?  My mom's was so small in the beginning and part of all this process of thinking is, what is the point of early detection if it really doesn't work.  I mean my mom only had 4mm of IDC, no node involvement, she did mastectomy and chemo even though they said she didn't need chemo because it was too small, but the thing got out anyways.  It is hard to wrap your head around, especially since I am almost 38 and have already had one scare with my breast, I think to myself even if it is caught early that it really doesn't matter.

Anyhoo....I went off topic there for a bit.  But, I will find this post and see if I can maybe PM her and see what she has been doing and what symptoms she has had.

Thanks again Lisa

chainsawz

I was found stage IV off the bat, and also had clean nodes - it can also travel out thru the blood stream, too. 

Did you get the BRCA genetics test?  I was 44 when dx, so  I had the test done and was negative.  I wanted to prepare my daughter if I was positive.  I wasn't, so I think it was just a crap shoot and I got hit with it....it seems random. 

Feel free to PM me anytime, too!   Best to you!!  lisa