Horrific News For Husband HELP PLEASE!!!

Believe51 · 06-28-2007, 07:43 AM

The Oncologist just called, my husband's MRI showed Brain Mets and we are off to treatment (Herceptin) and then to radiation today. I am so depressed, this set back was not something I thought I would hear today. The doctor called me because my husband was hard of hearing before treatment and it is even worse now. I have to go home and try to tell him this news. Oh my God girls, I just want to scream!!

Anything you can say to me right now would help, we have never been down this road before and I am taken a-back.

I know with breast cancer you need to expect anything, but not in my wildest thoughts did I think this would happen NOW!!!!

HELP US PLEASE

chrisy · 06-28-2007, 09:32 AM

Oh Marie, I know this is SO what you did not want to hear! My heart just sank when I read your post. If you feel like screaming, you should go ahead and do that (although you may want to do it out of earshot of your hubby since that might not help HIM).

Then try to calm yourself. BREATHE. BREATHE again. And again. The MRI report gives you more information. It is not the end, it is only information, which will help guide you and your team in deciding what the next step is.
You know that brain mets are treatable - as many on this board have been LIVING with this for years. Christine. StephN. Esther. Others (sorry I can't remember names!).
You didn't mention how large or extensive the brain mets is, perhaps you don't have this information yet.

Check the info on the Her2 home page, the link is below.

http://her2support.org/index.php?option=com_content&task=view&id=44&Itemi d=67

Again, I am so sorry you have this additional wrinkle to worry about. But you now have much more/better information for DFCI than you would have last week.

Please don't give up hope, keep believing.
chris

Shell · 06-28-2007, 11:51 AM

Marie-

Chrisy has good advice, to try to remain calm, and I see you have already scheduled an appoiintment at Dana Farber, which is great. Try to accumulate the info you need to make a decision, and then you can make your decision. Tykerb is supposed to be better than the herceptin for the blood/brain barrier, and perhaps that will be an option for you and your husband. I wish I had more soothing words, but know you are in our thoughts...

Regards,

Jean · 06-28-2007, 01:03 PM

Dear Marie,
Chrisy and Shell covered it well - I just want you to know I will
keep your husband and you in my prayers. Wish I could offer
more - but please do not give up! Many of the gals here and
fought back and won.

God Bless,
Jean

Barbara H. · 06-28-2007, 01:03 PM

Hi,
I strongly suggest that you make an appointment with Dr. Peter Black at the Brigham. I had a 3cm brain tumor three years ago and I am fine today. At that time I had mets everywhere except in the bones. Now I am only dealing with the bones. Dr. Black is excellent and one of the best in the country. He usually has clinic on Fridays. Maybe you can get an appointment for tomorrow.
I am thinking of you and certainly can relate to how you feel.
Best wishes,
Barbara H. (also a Dana Farber patient)

tricia keegan · 06-28-2007, 02:09 PM

Marie I'm so sorry for you both and always read your posts both on Komen and here. I'm glad the girls gave you good advice as I don't know much about this although my friend I met through this board had brain mets.She had surgery which removed only 40% of the tumour and then rads.I spoke to her last week and she is recovering well and will probably start Tykerb soon for her bone mets. I'm sure the girls here are right and there is life after this but can understand your panic. Please know my thoughts and prayers will be with you and your husband and try to see this as another "bump" which you will both get over.
Hugs to you

Andrea Barnett Budin · 06-28-2007, 05:01 PM

Marie dear, Please know that you and your husband are in our thoughts and prayers. Try to let all that love surround you as you fight back your understandably overwhelming feelings. I remember thinking -- there can't be anything worse. This is it. The end is near. Slowly, I came out from behind the locked bathroom door to speak to first one daughter, then the other. I didn't think I would ever get my BELIEF back. That is most probably where you are, but we all know how powerful *belief* is and you, honey, own it! I have read your posts and marvelled at your incredible attitude. You glow. Listen to Chrisy. BREATHE. BREATHE again. Slow down. Let it all seep in gently, when you are ready. For now, be there for your husband. Let that be your number one priority. Take the advice of these wonderful ladies who've been there and come through. Remember that -- they have come through. If one can do it -- your husband can do it. Let the power of that KNOWING hold you together. Let your love keep you strong. For your husband. He needs your loving belief now more than ever. Do it for him, honey. We're here for you to sound off when ever you want. And these women have great advice and enough courage to keep us all buoyed for a long while. Sending loving, healing energy to you and hubby... ANDI

Lala · 06-28-2007, 08:17 PM

Hugs to you. There is Hope in the treatment of brain mets.

I was diagnosed with brain mets last year. I was successfully treated with Stereotactic Radiosurgery. My Brain MRI results show I have NO EVIDENCE OF DISEASE in my Brain.
The tumors are gone.

There are many options available in the treatment of brain mets. The Key is to Find a Neurosurgeon that treats brain mets on a regular basis. I would suggest you go to the best major cancer center near you, that being Dana Farber Cancer Institute in Boston or Memorial Sloan Kettering Cancer Center in New York.

Here are the weblinks
Memorial Sloan Kettering Cancer Center
http://www.mskcc.org
Dana Farber Cancer Institute
http://www.dana-farber.org

Have Faith and Hope,

lexigirl · 06-28-2007, 08:20 PM

Marie,

Please know that you and your husband are in my prayers. I am hopeful that he will find a succesful tx.

Hugs and Prayers,
Lexi

tousled1 · 06-28-2007, 09:18 PM

Marie,

I know this was not the news you were hoping for. My heart goes out to you and your husband. All is not lost, there are many women on the board who have been treated successfully for brain mets. I'm sure you'll find out more when you have your appointment on July 2nd. I'm keeping you and your husband in my prayers.

Beckie · 06-28-2007, 11:18 PM

I am so sorry about your husband's brain mets. I just found out about mine this week, also. It is scary, but each step along this road has been a bit scary until we got the information and strength to go a little further. I will be praying that you will be able to gain strength from each other, and from the Lord. All you can do is take each day at a time and fight the best fight you can for that day.
God bless you.

Beckie

Believe51 · 06-29-2007, 12:44 PM

Oh Girls, how you can help me to see the other side of things. I think that digesting the news yesterday was too much. I strive each day to think & worry about the 'what is' and you girls caught me thinking of the 'what if's'; I thank you for that, for catching me before I fall--Ooops! LOL. I am so thankful to have found such a blessed group of friends here @ HER2support. It is funny to have so much knowledge about something(Brain Mets)and as soon as you hear the news you FREEZE!!!

We found 3 spots that were about 1 cm large and full Brain Radiation was suggested for him. His tumor markers are up but not alarmingly as before. Our hope is to go on Tykerb(w/Xeloda + replace Tamoxifen)) and break that brain/blood barrier. Although we are nervous about Dana Farber we look forward to it with great relief. We have all our ammo to fight with and you can all consider us "Armed & Dangerous"....BRING IT!!! He has been fitted for the form they will use for radiation and if he needs it after DFCI we can start radiation that day. The day after DFCI is with 2 seperate Oncologists: his original doctor + the second opinion doctor. Part of him feels the lag with getting on to a new treatment was too long and I hope he does not feel betrayed from the doctors actions. I too feel there was too much time in between but I am not a doctor I just play one in real life.

I feel empowered from your posts, your wisdom is priceless. Your gift of friendship is more than I ever imagined and I say thanks each morning and evening. As some of you may already know candles are one of my greatest vices. Two Yankee or two Henri Bendel candles burn in my home daily: One for my Love, the second for friends & family. Not a day goes by that I do not say a prayer when lighting them. Today I will light them again giving thanks to these special bonds we have with you Angels. Thank you for your replies and keep 'em coming if anyone thinks of anything else for your wisdom is part of that "AMMO". I take your questions & comments to all doctor's appointments and such.

When we sit quietly together tonight most certainly by the ocean, my thoughts will be consumed by your comments, your strength and knowledge. Thank you all for loving and supporting us because we could not do this without you. As the waves crash the shore with awesome fierceness it will remind me of the courageous strength you all have. When the sun sets it shall be one more day we have fought, one more day we have won. And most certainly when I smell the fresh ocean air I shall give thanks to being alive here with my Knight in Shining Armor and the wonderful people here I am proud to call my Angels.

We thank you again for being you. Sometimes at night I think about someone in particular, I will think explicitly of them. I review their journey in my mind, the words of their wisdom, their quests. I remember a certain funny post or the baby born in their family. I pray for the families of friends that they have lost. Yes My Loves, each and every single day is comprised of daily tributes and today is no different!!

I leave you again for now saying: BRING IT!!!!.....and that I do and always will still BELIEVE!!!...>Waiting For A Miracle>Believe51..(Marie G)

Believe51 · 07-01-2007, 06:15 PM

Wish us luck 'cause here we go!! Again we say: "BRING IT". We have our ammo, our prayers, our family & friends. I do today and always shall BELIEVE (see I wrote that in red 'cause I am full of fierce passion and ready for the next battle to help him with!! LOL) We are ready and looking forward to our next move. Thanks Warriors!!..>Waiting For A Miracle..>Believe51..(Marie G)

Andrea Barnett Budin · 07-01-2007, 06:27 PM

Marie, I can *feel* your passion and your fierce determination and it is a thing of beauty. Your BELIEF is vibrating off the page! Our prayers are with and you are truly well armed to forge ahead. How lucky your husband is to have such a strong woman by his side. I love your Spirit. It's aglow... With loving, healing energy, ANDI

Andrea Barnett Budin · 07-01-2007, 06:27 PM

Marie, I can *feel* your passion and your fierce determination and it is a thing of beauty. Your BELIEF is vibrating off the page! Our prayers are with and you are truly well armed to forge ahead. How lucky your husband is to have such a strong woman by his side. I love your Spirit. It's aglow... With loving, healing energy, ANDI