New Here - Mom dx last week Brain Mets

[mimi1030]

Hello Ladies,

I am new to this board, you were recommended to my by the girls at breastcancer.org which is where I have been posting for the past 2 and a half years about my mom.

To begin, my mom was diagnosed in Aug 2004 with DCIS via steriotactic biopsy, she had a lumptectomy, margins were not clear. She had a left sided mastectomy, pathology revealed Stage 1 - 4cm DCIS, 4mm IDC, Grade 1, Her2 +++, grade 1 is rare for her2 but the double checked and it was infact grade 1. Lymph nodes neg. She went on to have 4 rounds A/C. 7 surgeries for failed recons, and ended up with TRAM Flap procedure which was a mess. Sept 07 random PET Scan revealed extensive liver and bone mets. No symptoms. Treated with weekly taxol/herceptin/zometa...PET scan 1/2008 NED complete recovery to which doctors were baffled by. Taxol was stopped December 08, NED still, Nov 09 Herceptin stopped after 2 straight years. Jan 10, new spot in brain. Jan 10, Brain MRI revealed 10 lesions 1.3cm in frontal lobe, 1.2 cm on basal ganglia, 1cm on the Pons the remaining small specks were throughout the cerebellum and cerebrum. Still no symptoms.

To confirm it was the breast cancer and not new primary, craniotomy was performed 2/25/10 on the lesion in frontal lobe, tumor was removed and confirmed her2 positive breast cancer mets to the brain. 3/01/10 began Tykerb, 3/11/10 meets with radiation oncologist for facemask for WBR, she will begin Xeloda same day as rads begin on 3/15/10.

It has been a long ride the past 6 years, and my mom is scared about what side effects she will get from radiation. She is not afraid of the treatment she has been on so many and so that is not the problem. She is worried that WBR will make her very sick and is unable to care for my 13 year old sister.

My mom is a single person who lives on the central coast, ca. She is 55 years old and I am the oldest daughter at 37, I live in San Francisco, my middle sister lives in LA she is 28. There are no support services on the central coast to offer her support or help and so I am trying to find out all I can to help her get through radiation and to give her hope that she can beat this again. If any of you could offer some advice, that would be wonderful.

I wish you all the very best and I send along a big hug to you all.

Michelle

[Rich66]

Some more on brain mets options here

[WolverineFan]

Michelle,

I am sorry about your mom and that you have to be here on this site, but you will find this to be a great site for support, wisdom, humor, and inspiration. There are many encouraging stage IV stories on this site, and I am sure the wonderful women who have success stories will chime in.

Please keep us posted as to how your mom is doing and we welcome you and your mom to this wonderful community that unfortunately has been brought together by this devastating disease.

[Joe]

Michele,
Have your Mom's oncologist contact Dr. Nancy Lin at Dana Farber in Cambridge, MA. She has done a lot of research with metastatic CNS tumors and is one of the country's leading experts.

Regards
Joe

[Jackie07]

Michele,

Has your Mom been going to all the treatment by herself? Can you contact the American Cancer Society in her region and find out the type of assistance she can get? (Such as getting a ride...)

She most likely will need some live-in help for a while after her brain surgery. A thirteen year old can offer lots of help, but there should be an experienced adult checking on things periodically. Is there any relative/friends/colleague/neighbors available to your Mom? Please check with her local social service agencies and the social worker of her hospital. They can coordinate lots of things for your Mom during her recovery period.

[CourtneyL]

Hi Michele,

I am so glad that you found us. What a wonderful daughter you are for reaching out and helping your mom. I am in San Francisco too and am more than willing to chat with you about my experience. I just recently typed the following to my young survivor's support group and I will paste it in here since it is the narrative of my experience with brain mets. It was in response to a question someone had about getting brain MRI's. I highly recommend, if she hasn't done so already, that your Mom seek a second opinion with Dr. Michelle Melisko or Dr. Hope Rugo at UCSF both are experts in treating breast cancer brain mets and have done extensive research in the field. PM if you have questions or need more info:

I want to encourage you, and anyone else experiencing headaches, to get the brain MRI. They are not nearly as cumbersome as PET/CT scans. You are in and out of the lab in about an hour and a half. Only your head is in the machine and they give you earplugs to deafen the jackhammering sound that you will hear. Other than the IV that they will insert to give you the contrast, the procedure is painless. Definitely take an Ativan if it will help you to relax. They can probably even give you one at the Radiology Dept. if you ask.

The reason I think it is CRUCIAL to get these brain MRIs is that if they do discover brain mets, they are entirely treatable if they are found small (less than 3 cm). While I really hope that your symptoms are not due to brain mets, know that if they are, they can be successfully treated with targeted radiation.

In December 2008, I had no symptoms to speak of (I was already metastatic however) but I had a dream that I had brain mets. Upon my insisting, my onc ordered a brain MRI (I'd had one that past June that showed nothing). They found six brain mets. SIX! I made the horrible mistake of Googling breast cancer brain mets and read that I'd probably only have another few months to live. I was devastated. The rest of my mets (liver, lungs, bones) had all but disappeared but now I was going to lose my battle for sure.

WRONG.

As I am HER2 positive as well, I started on Tykerb as it is known to cross the blood brain barrier. We wanted to see if that would have any effect on shrinking the brain mets. It didn't. It may have slowed them but it didn't stop them. My next brain MRI in February 2009 showed some slight growth. We decided to watch and wait. By April, my brain MRI showed more growth and another new brain met. I now had 7. My onc recommended whole brain radiation. I freaked. We went to UCSF and Stanford for second opinions. I eventually decided on Gamma Knife targeted radiation and added Xeloda to my drug treatment (also known to cross the BBB). I had Gamma Knife in April 2009 to TEN brain mets (they found 3 more micro mets the morning of the Gamma Knife procedure). I was told that, because I declined whole brain radiation, there would likely be more micro brain mets that they just couldn't see yet but would be popping up soon.

We waited and I prayed. My June 2009 brain MRI showed almost complete resolution of all 10 brain mets and nothing new! The radiation and drugs appeared to be working! In September 2009 they found one tiny brain met (5 mm) and we zapped that sucker with Gamma Knife too. December 2009 - brain all clear!

Its now March 2010 and I have outlived the supposed "statistics" for breast cancer brain mets. I have no symptoms and feel great. Of course I live with the possibility that the next scan will show more brain mets. But I also know that they are completely treatable with Gamma Knife radiation. Gamma Knife has virtually no side effects and is totally effective at destroying brain mets. It can destroy tumors up to 3 cm in size. I was lucky that mine were all small - under 1 cm. If they are larger than that, they usually have to remove them surgically. I am glad I declined whole brain radiation because that treatment can leave lasting and significant side effects (impairment of cognitive function, permanent hair loss). And, importantly, WBR can only be done once.

The message I would like for you to take from all of this is this: if you have symptoms, get the brain MRI. As anxiety-inducing as it can be, you will be glad you did when you get your clean bill of health. If you are already metastatic, get routine brain MRIs. I think the stats are somewhere around 30% for getting brain mets if you are already Stage IV (although, I don't put much stalk in stats). If you do get that scarier diagnosis, know that you are not out of the game - these things can be successfully treated. I know women who are 10 years out from brain mets diagnosis! There is hope. Everyday that I am here, I am helping to re-write those incredibly grim statistics.

[mimi1030]

Hello Courtney,

Thank you for your post, it was very inspiring to hear. What struck me was your oncologist, Dr Michelle Melisko, she was my mom's oncologist from the moment the cancer was discovered in 2004 in her left breast until she was diagnosed with liver and bone mets. Dr. Cheryl Ewing did the mastectomy and Dr Melisko followed up with the chemo back in 2004. My mom initially had a very small cancer, but we decided to make sure she got the care of a well renowed cancer center, so we chose UCSF.

It was helpful to us both as I live here and for 5 years I was able to be a part of the entire process. Dr Melisko told my mom her cancer had spread to her liver and bones in 2007. We were devastated at how 4mm of IDC with no lymph node involvement or vascular invasion could end up in her liver and bones, we were floored.

Mom decided to get a local oncologist to give her weekly treatments of Taxol/Herceptin and Zometa as it would have been too hard for her to travel all that way every week for 3 weeks. So, that was the last we saw of Dr Melisko.

Fast forward to Jan 2010, PET scan revealed new spot in frontal lobe and voila....after brain MRI they discovered 10 of them, 3 of them ranged from 1cm - 1.4cm the others were not measure as they were consider very small circular lesions throughout the cerebrum and cerebellum. So they told her she was not a candidate for Gamma Knife as there were more than 3, so WBR was her only choice.

They started her on Tykerb last week, then they will introduce the Xeloda on 3/15 when they begin WBR. Mom is terrified of what radiation will do to her brain. In her 6 year battle she has never had radiation of any kind so she is very apprehensive. We would love to think gamma knife was an option, but the oncologist said that they need to get everything that they see and dont see. Then if they need to do gamma knife after that for the odd one or two then they can.

Who did your gamma knife UCSF?

Thank you all for your responses it helps me a great deal to understand this and help my mom with it.

[mimi1030]

Hi Jackie,

My mom has a very good friend that lives up the street from her and she takes mom to her appointments when mom can't take herself which is not often. Mom hates to be chauffeured around, her independence means a lot to her. She was on restriction after they removed the largest brain met in the frontal lobe, but she got over that really quickly.

Mom is back to her routine of walking the dog around the lake and doing her own thing as she likes it. My sister and I go home as often as we can on the weekends to see her and considering all she has had done to her in the last month, she looks amazing. She has had 2 liver biopsies and a brain met removal. They could not find any cancer in the liver after 2 biopsies so they had to go into the brain to make sure it was the BC and not a new primary brain tumor.

Mom has never had any symptoms from any of her mets, her liver was covered in 2007 and after 2 months of Taxol and Herceptin, it all disappeared and has never returned. The only site she is dealing with now is the brain.

She has support services should she need anyone through the week when her friend is unable to go over there, but it is rare that my mom needs help. She has always tolerated her treatments very well and been able to go about her life as normal. So, what scares her is how bad WBR will be to her independence.

Of course, if mom needs anything anytime we here children are right there when she needs us.

Thank you all again for all your help, this is an amazing place.

Hugs Michelle

[mimi1030]

Hi Courtney,

I just noticed where you work, you are close by me. I work at 101 California St, at Cooley Godward.

Such a small world

[CourtneyL]

Hi Michelle - I only see Dr. Melisko for second opinions. My oncologist initially recommended whole brain radiation because of the number of brain mets I had. So I met with Dr. Roundsaville at CPMC and was all set to go that route before I began reading messages from the ladies and gentleman on this site urging me to consider Gamma Knife if that was an option. I met with Dr. Penny Snead at UCSF and she agreed to do the Gamma Knife despite my large number of brain lesions. Both my onc, Dr. Melisko and Dr. Snead agree that it was the right course for me. It was able to treat all the brain mets with minimal side effects.

If your Mom can hold off on the WBR for a week or so, I strongly urge her to get in to see Dr. Snead to discuss the possibility of Gamma Knife. Melisko and Rugo can also discuss with her clinical trial options, of which there are many. But the Xeloda/Tykerb combo is a good idea and I am glad that your Mom will be starting that soon.

[mimi1030]

Hello There,

I wanted to update you on how mom is doing with her WBR. She just had treatment #4 and so far so good. She had a bit of a headache first few days, but the decadron took care of that. A little bit of nausea for a day but it has gone off. She is tired more so than usual, but she said if that is the only symptom she gets she is okay with it.

Mom has had some pretty brutal chemo's in the past 6 years that landed her in isolation in hospital and so she doesn't want to go back to those days. Her rads Dr doesn't think she will have a problem with the radiation from here on out.

So 4 treatments down, 16 to go. Her rads graduation day is April 9th, so she is counting down the days.

She will begin the Xeloda on the 22nd of this month so I am hoping she doesn't get sick from that. She has been on the Tykerb for almost 3 weeks and so far no side effects from that. But, I guess we will have to see how she fairs once Xeloda is added.

But, overall she is out and about exercising and doing everything she needs to do which she is very grateful for.

I do need to research the clinic trials to see what they have going for people with brain mets right now. But, I am hoping that the WBR works for her.

Hugs to all!
Michelle