Not so good news for me.....

[Esther]

I was sitting in bed watching TV and minding my own business on Mon morning, when I got a call from my Neurosurgeon at Cedars-Sinai. And he starts off by saying the radiation oncologist is there with him....

Well, he was calling to say that after reviewing the MRI taken post surgery about 3 weeks ago, they spotted a tiny 1mm new lesion in my brain stem. They wanted me to come in and consult with the radiation onc on Tuesday.

The options they gave me were Gamma Knife, Modified Linear Accelerator Radiosurgery, WBR. MLAR is given in multiple sessions and is the treatment of choice for delicate areas while minimizing effects on healthy tissue around it. So that is option I chose.

I went in this morning and had an MRI, CAT scan, and was custom fitted for the frame for the treatments. I will have 5 treatments in total beginning next week on Wed. and Fri, then Mon/Wed/Fri of the following week. They got all excited about the Lapatinib option, and said if that wasn't in the picture, they would be recommending WBR, which for me would be my absolute last choice.

I am scheduled to have the MUGA and EKG this Fri, then see my onc on Wed morning next week. I AM getting the lapatinib. My sister and brother have said if insurance does not cover the cost, they are prepared to cover the approx. 42K per year that Lapatinib will cost. So I will be starting the Lapatinib within the next couple of weeks, one way or another.

This is one more unforeseen hurdle to get over....knocked me down for a bit, but I'm re-grouping and doing what I have to do to power through this. Now I'm sincerely hoping that the fact that I've been such a complete responder to Herceptin, may be an indication that I will respond to the Lapatinib as well....One can only hope!!!!

[eric]

Esther,

I'm really sorry about your surprise news. It stinks that you have to deal with this but,as you mentioned, the lapatnib might be a silver lining. My wife seemed to respond well to herceptin and the onc feels she's a perfect fit for lapatnib so I would expect you to be as well.

Eric

[hutchibk]

Wow - such intense news to get. I am inspired by your strength and determination to power through!

I am having my brain MRI on Friday. So far all we know of is a spot on my cervical spine... around C1 or 2. The MRI will tell us the size. Hopefully nothing shows up in the brain. Have had headaches everyday for the last 3 weeks, but living in central Texas, everyone including my onc, has had the crazy allergy headaches non stop for weeks.

I learned so much from your post, thanks for sharing. I am sorry that you are facing this hurdle.

[PatS]

Hi Esther,

I'm sorry to hear the latest news. It's good news about being able to get lapatinib though. The last time I saw my onc. she said she had two patients with brain mets who had been through different meds with no response but have responded to lapatinib.

Take care,
Pat

[Lolly]

Esther, I'm so sorry you were hit with this news so unexpectedly. But it seems you and your team have a pretty good handle on things. I wonder if the lapatanib will have any synergy with the MLAR? That might be a good thing. Best wishes for next Wednesday, I'll be thinking of you while I'm in Chemo :)

<3 Lolly

[StephN]

Oh BLAST it! Cancer sure CAN get into our business!
Just when you thought that the brain stuff was under control for a while.

I have a question since 1mm is SO small and most MRI machines make 2mm cuts. Is it one of the new 3 Tesla magnets?? We have one now at the U of W, but I have continued using the "old" MRI machine from last year for consistency of imaging.

These newer machines can catch the mets in a smaller size and hopefully give a better chance of knocking them into oblivion. Have at it and let us know how it goes.
Your family knows you are a good investment - they must be great people to offer to pitch in like that.

[Soccermom]

Esther,
Wishing you calm in the face of this news. Stephs comment about "blasting it into oblivion" sounds like a great one to me. Hope your treatment does EXACTLY that!
Hugs,Marcia

[Sandy H]

Esther am sorry to hear your not so good news! It seems this is the season for a few on this board. I will say a few prayers for you especially as I am doing my bone scan today. Sending you a big hug, Sandy

[Annemarie]

Ester,You will be in my prayers.

[Andi]

Esther, my thoughts and prayers are with you. May you respond as well to the lapatinib as you did to the herceptin. Keep on fighting, you will get through this.

[suzan w]

So sorry to hear of this latest 'twist'..my prayers are heading your way!

[Esther]

Steph, I'm not sure what type of machine they have at Cedars-Sinai, but they can detect things way smaller than the machine I was using before at Loma Linda University.

Scary to think that if I had gotten the MRI at Loma Linda I'd still be ignorant and happy....their machine wouldn't have spotted a 1 mm lesion.

The second MRI I had done yesterday showed the lesion had grown in the 3 weeks time frame between MRI's. It had gone from 1 mm to still a bit under 2 mm.

I have heard from another metster who has dealt with 2 lesions in the brain stem and it has given me renewed hope and optimism.

[chrisy]

Esther,

Hate those surprises! You are very much in my thoughts - and I hope this new strategy will be the clean up you need to stop this in its tracks for good, backed up by the Lapatanib. You are such a strong person, and a major fighter. Get the gloves back on and slap it down! I agree with StephN, your family knows you are a good investment! But I'll bet insurance will pay for the Tykerb then you all can spend that money on a celebration instead.

Much love
Chris

[Yorkiegirl]

Ester you will be in my thoughts and prayers.


I am so sorry to hear about this news, you will beat this as well.

[Carolyns]

Ester,

Sorry to hear the news. It sounds like you have a good and well thought out plan.

You are in my prayers.

Love, Peace, and Hope,

Carolyns

[Barbara H.]

Hi Esther,
I'm so sorry to hear this news. I just came back from having my MRI, the first one since my surgery last December. I am already expecting it to light up because of my issues with necrosis. I hope the Tykerb works for you. I may be going on it when I return from my trip from Florida.
You are in my thoughts!
Barbara H.

[vickie h]

Esther, So sorry to hear your news today. I am also starting Tykerb this next week, along with Xeloda. Mu Onc seems to believe that since Tykerb is now FDA approved, your insurance should cover it. I will keep you in my prayers and please let us know how thing s go. Cedar Sinai has the best machines, so you went to the right place. Much love, Vickie

[Bev]

Vickie, my same thought. With FDA approval this should be covered. You might have to fight for awhile, but they'll roll over. Hope this all works out Steph. BB

[Lala]

Esther,

I am thinking of you and praying for you. I know you are in Great hands there, Stay Strong Sister.

Hugs to you,

[Mary Anne in TX]

Esther, you are amazing! Crumby news and you greet it with wisdom, determination, and good spirits. I am so proud to be your cyber sister! I'll pray and believe that you will respond perfectly to all done and come through with shining colors! Thank you for being you and sharing your next adventure with us. Lots of love, ma

[Karen t]

Esther, you are in my prayers. Karen

[tousled1]

Esther, So sorry to hear the bad news. On the good side it's a very small lesion. You have been so strong and positive with all that you have been through. I know that you have the strength to once and for all kick this beast to the curb. You are an inspiration. I will keep you in my prayers.

[cafe1084]

Detecting a tumor that small is no tiny feat, so technology and great docs you definitely have on your side, as well as everyone here pulling for you, and what sounds to be a most loving and supportive family. Whether it's called a "challenge", issue, turn of events, it still sucks and is something I hope no one ever gets used to hearing, and you may feel alone in all this sometimes, but you aren't ever too far away from people who love and care about you. Be well and be hopeful!

Stephanie C.

[HavahJ]

I don't come on here often anymore but right away saw your post. You're the only person I know here! I feel so bad about your met. Is the drug you're doing tykerb? I'm supppose to start that soon. It does cross the blood-brain barrier (tykerb that is). You sure are a hanger-onner! I admire you and this sounds like a lickable one. You've managed worse. Hope it goes quick. HavahJ - Jan

[Sheila]

Esther

Seems like this little mets get a mind of their own....but know that you will show them whose boss of the brain...hoping that the Tykerb will work perfect.
Thinking of you and saying prayers

[Jean]

Esther,

I will be praying for you and I know that the Tykerb combined with your
strong will and determination it will be good for you again!

hugs,
Jean

[rinaina]

So sorry Esther for your latest news. I admire your strength and ability to "regroup", so quickly. You are a fighter and I know if anyone can deal with this, you can. You are in my thoughts and prayers.

[Vicki]

Hi Esther,

I'm sorry to hear about this darn bump in the road, so consider it "spring cleaning" and you have the latest, new cleaning agent, lapatinib, to clean house. I'm thinking of you from here in O.C. I'm also going to send this link of yours to my friend in L.A. who is dealing with the same thing and will find your posting valuable to her, as well.

Be well and hang in there.

XO,

Vicki Z

[Vanessa]

I am also sorry to hear about your news, but I'll be sending prayers and best wishes your way.

[Emelie]

Esther I am so sorry to hear of this surprise. I know that this is just one more bump in the road that will not slow you down. I can't tell you how much it means to a "newbie" like me to see such courage, determination, and grace under these stressful times. Please stay strong and think good thoughts.
You are in my thoughts and prayers and I hope you blast this spot all to ----!

[Mary Jo]

Hi Esther,

How's it going? I hope things are moving a long well and you have begun to get rid of this new nuisance in your life.

Love, support and caring thoughts from me to you.

Mary Jo

[Vanessa]

I am praying for you and sending positive vibes your way!

[Barbara2]

Add me to the many others who are keeping you in their prayers.We ask, too, that because the met is so small, that the least invasive treatment will work for you.

Hugs and prayers