HER2 Support Group Forums

HER2 Support Group Forums (https://her2support.org/vbulletin/index.php)

- her2group (https://her2support.org/vbulletin/forumdisplay.php?f=28)

- - Brain mets (https://her2support.org/vbulletin/showthread.php?t=51164)

Hi Ladies, my name is Jeana and i was diagnosed stage3 her2 in June 2010, and then in April 2011 was diagnosed with 4 brain mets... I underwent surgery to remove the 2 in the back of my brain because they were causing me to have seizure's and then i had 5 weeks of WBR to shrink the other 2 mets. I had a MRI done about 3 weeks ago and everything looked good. I will be having a Pet Scan done on September 2 and hopefully everything will be good on that also. I am currently getting Herceptin every 3 weeks for a year as long as my scan's are clean. The only thing that bother's me right now is that my right arm hurt's all the time and I am wondering if it could be caused from where my Lymph Nodes were removed, but i still worry about the brain mets coming back. How do i get pass this and get my life back? I am so scared...

Your right arm pain could very well be early lymphedema caused by lymph removal. You need to ask your Onc about that. Also, consider asking your Onc what they think about combining Tykerb with your Herceptin... Tykerb crosses the blood brain barrier (BBB) and can help with treating the brain mets.

Good advice from Brenda above - one who knows. You are one of the small percentage who have mets in brain as first distant site. Hopefully these will be your last!

My experience with brain mets is limited to Gamma Knife and an open surgery for cerebellum, so can't say much more.

I hope the PET will show good results and you can join the NED crowd of BC patients. Herceptin should be easy to tolerate and catch any more lurking cells before they can pass into your brain again.

Thank's so much for responding to my post, hopefully i will get good result's from my pet scan and my next brain MRI will still be clear, and i hope everythig continues to go well for the both of yall..... Jeana

Jeana, I pray all of your tests come back clear! Please know you are in my prayers!

Hi Jeana - I too have been battling brain mets. Mine were found in December 2008 so know that it is possible to battle this for a long time. Our dear StephN is a great example of a success story with brain mets! She has not recurred since her initial brain mets! I can relate to your comment about living in fear of the brain mets returning. At times it can seem overwhelming. Like we live in 3 month increments in between scans, wondering, worrying, what will the next scan show? I find my anxiety level increases as my scan date grows near. I deal with it by taking plenty of fun vacations, occupying my time as much as possible with fun activities with friends and family, volunteering when I can, doing daily yoga or other exercise and, of course, drugs. Ativan is often my best friend. I'm currently trying out Hypnotherapy to get rid of some of the fear and anxiety. I find it very comforting and relaxing. I hope you find your way to a place where you can have some peace from your worries. Know that you are not alone.

With love,

Jeana, your arm pain could very well be caused by lymph removal. I only had 2 or 3 removed but still developed mild lymphedema which can be painful at times. Or at least uncomfortable. Have it assessed. Is there any swelling? You can wear an elastic sleeve during the day that offers relief. And there are specialist massages you can get and be instructed how to perform yourself. Avoid heat on that arm and be careful not to get a cut. Dont use a razor blade underarms. Let us know what you find out
And of course you are scared. This is a scary place, Cancerland. But try to live for the day and not project too much into the future. We're not there yet.
Keep the faith.
ETA: Coutney makes a good point. Ativan can offer anxiety relief.

Thank's Bonnie and Courtney for your response to my post and i did go to the doctor wednesday and they scheduled me a MRI along with my Pet Scan on Friday to make sure that there isn't anything else going on with my arm and they did say that it could be lymphedema.. i will keep you ladie's posted on my result's, will get them back tuesday and thank's again...Jeana

Hi Ladie's, got my Pet Scan results today, I have a spot on my chest wall, lung, and tyhroid gland. Having biopsy done Thursday on the one's that are on the chest wall and thyroid gland.. I am so worried, i just pray that it is not cancer....

Dear Jeana, Please know that you and your family are in my prayers and your all in Gods hands. Gods blessings to you.

Jeana,

Here's one of my favorite song:

May the road rise to meet you

May the wind be always at your back

The sun shines warm upon your face

The rain falls softly upon your field

and until we meet again

May God hold you in the palm of His hand

May the Lord bless you and keep you

May the Lord lift His face and shine upon you

And give you peace

Hi everyone, went to my onc today and got my result's from my biopsie's. The one on my chest wall was her2, and the one in my neck wasn't cancer. Have a small spot on lung and a few lymph node's were involved...I am going to have 2 round's of chemo and then have another pet scan to see if it got it and to make sure it didn't spread..Hope this work's, this is the third time in 15 month's!!!!

Good luck Jeana, I hope this chemo gets rid of anything still lurking about.
Ellie

Hi Jeana - I just had a second opinion appointment with Dr. Melisko at UCSF and she recommended the following clinical trial to me if my next brain MRI shows progression:

http://clinicaltrials.gov/ct2/show/N...o_unk=Y&rank=9

You might want to consider it as a back up plan if you have progression as well. This might bring you some relief from your anxiety - knowing that you have lots of options if the brain mets do come back. This is my next move unless they get a Neratinib trial first. There are options. You will find something should you need it!

Just saw today..Another back pocket thang:

Radiother Oncol. 2011 Aug 29. [Epub ahead of print]
Reirradiation of brain metastases with radiosurgery.

Maranzano E, Trippa F, Casale M, Costantini S, Anselmo P, Carletti S, Principi M, Caserta C, Loreti F, Giorgi C.

http://www.ncbi.nlm.nih.gov/corehtml...PubMedLink.gif

Source

Radiotherapy Oncology Center, S. Maria Hospital, Terni, Italy.

Abstract

PURPOSE:

To assess the outcome of reirradiation with stereotactic radiosurgery (SRS) of brain metastases (BM) recurring after whole brain radiotherapy (WBRT).
METHODS AND MATERIALS:

Between September 2001 and October 2008, 69 patients who recurred after WBRT were re-irradiated with SRS using a linear accelerator. The dose prescription was generally chosen according to maximum diameter of the tumor as suggested by Radiation Therapy Oncology Group (RTOG) 90-05 protocol. Patients were stratified by Karnofsky Performance Status (KPS), Neurologic Functional Score (NFS), RTOG Recursive Partitioning Analysis (RPA), Score Index for Radiosurgery (SIR), primary disease, dimension and number of BM, and time to first brain recurrence after WBRT. Response, survival, and toxicity were analyzed.
RESULTS:

At time of this retrospective analysis all patients had died. The 69 patients reirradiated with SRS had 150 metastases. Median interval between prior WBRT and SRS was 11months and median SRS prescribed dose was 20Gy. Response was obtained in 91% of lesions with 1-year local control rate of 74±4%. Significantly longer duration of response was associated with higher doses (⩾23Gy) and response achieved after SRS (complete and partial response better than stable disease). Cause of death was brain failure only in 36 (52%) patients. Median overall survival after reirradiation was 10months. Variables which significantly conditioned survival were KPS and NFS. Four (6%) patients had asymptomatic radionecrosis that developed prevalently when lesion diameters were larger and cumulative doses exceeded the values recommended by RTOG 90-05 protocol. About three-fourth of the patients had a good KPS and NFS after reirradiation.
CONCLUSIONS:

Reirradiation of BM with SRS resulted feasible and effective. A correct patient selection and an accurate evaluation of the cumulative irradiation dose were suggested.
Copyright © 2011 Elsevier Ireland Ltd. All rights reserved.

PMID:21880387

Hi everyone, just wanted to let you all know that i started my chem today. I am getting Abraxane along with Herceptin. I will get this once a week for three week's, take a break then do it again for three more week's. I will get another Pet Scan after this to se if it is working for me, I sure hope so.

I hope and pray you do too Jeana! Gods blessings to you!

Jeana, Just wanted to tell you that I was thinking about you and sending lots of prayers and good vibes your way!!! We are all so lucky to have this place (home in a way) of comfort and understanding that gives us the ability to exchange wisdom and ideas and most of all HOPE!!! Glad to be a part of such a neat group of women even if I don't like the reason "why" we're all here. Hugs and Hope always !!!

Jeane,

Thinking of you today. Let us know how things are going.

Amelia