Need your Help/Advice - Got Dx with Brain Met

[krisvell]

Hi ladies;
This week I started to have double vision when laying down. Unfortunately, I just got a call at 9am today they found a lesion on the brain stem/cerebellum size 1.6cm x 1.7cm.

Don't know what they are recommending to do but if any/all of you can lend your advice, I would greatly appreciate it.

I'll be spending my weekend reading posts here to get myself educated for Monday's visit with the Oncologist.

( : ... big disappointment needless to say. It also excludes me from finishing the Vaccine Trial. (:

Kris.....

[Mary L]

Kris, I am so sorry that you have to go through this. It is a BIG disappointment!!! I havn't gone through this but I know all the others who have will be sending you advice and support. I will be paraying for you. Best Wishes, Mary L

[michka]

Kris, my heart is sinking reading your post. Just a few days ago you were by my side supporting me with kind words and encouragements. I am sure many wonderful women here will help you with their own experience but I know how you feel. May our doctors work faster. Sending hugs. Michka

[caya]

Kris, I am offering my support to you - I'm sure some of our members with brain mets will be able to give you suggestions and advice.

all the best
caya

[StephN]

Dear Kris -

Feel bad for your situation, and see you took quick steps. Did you have a brain MRI?
You seem to be picking yourself up and dusting yourself off in short order. That is what is good about this site.

It is sort of a shock at first to see that other BC patients REALLY DO have progression of their disease, but then to follow them down their new path can be very enlightening.

That is how it happened for me, because another member here had posted her stereotactical brain treatment in great detail.

I had the treatment info - just needed to get a grip on the fact that is was actually happening to ME.

It is my prayer that you will have just the one spot and that it is treatable by radiation means.

[KDR]

Kris
I have no experience with this at all. I am sorry that you have yet another struggle. There are many here who've experienced excellent outcomes. Please keep the faith. Thinking of you,

[Barbara H.]

Hi Kris,
My thoughts are with you. It's upsetting to receive this news. I heard it 7 years ago this coming May. I assume that you will be treated with targeted radiation. You will not find this treatment too difficult, but I can understand that you are upset about not continuing the vaccine trial. It is likely that this brain met was seeded before your treatment begin. I have confidence that you will be fine after treatment, and will have the opportunity at some point to enter another vaccine trial.
Thinking of you!
Barbara H.

[krisvell]

Thank you all for posting your words of encouragement and suggestions. To StephN; yes I had a brain MRI and they faxed me the report this afternoon. My oncologist is away this weekend so I'll have to wait til Monday. Based on the report, it is only one lesion -- 1.4 x 1.6 x 1.9cm involving the right cerebellar peduncle; base of the brain. I really don't understand everything but it looks like that's the only place and there's a lot of nos, unremarkables, normals describng other parts of the brain and tumor type, so maybe that's promising.

Your encouragement and successes gives me to strength to fight this one off too. I only wish that I had a longer time before recurrence but those are the cards that have been dealt to me. You have all been a true safety net; there's always someone who knows what to do.

THANK YOU ALL; keep 'em coming on advice. I really appreciate it.

Kris....

[bejuce]

I'm so sorry to hear about this, Kris! I'll be thinking of and praying for you. I believe quite a few members have had success with Gamma Knife - be sure to ask your oncologist about it and keep us posted.

May you find a good and successful treatment plan soon,

Marcia

[ammebarb]

Kris, I have no information or suggestion for you....just a heartfelt wish that you will soon have a good treatment plan that zaps the met. Thinking of you and sending a gentle hug.

Barb A.

[joyce lutz]

Hi and best of luck to you with your treatments. My daughter has brain mets (7) and is soon to have SRS (form of gamma knife) treatment after we see if Tykerb will work to reduce them. There are many options out there and by your reading all you can you'll become educated. So many say do not do whole brain radiation (WBR) and if the dr. feels tumor can be treated by gamma/cyber knife then definitely go for that over WBR. Maybe some of the others will weigh in on this too. My best to you
Joyce

[Joan M]

Kris,

The message board gave me a lot of support when my brain tumor was diagnosed. I was given a lot of comfort by members who had and who never had a brain met, as well as from women who are early stage.

The next step is to find out whether you are a candidate for stereotatic radiosurgery. I had a craniotomy followed by five dosages of stereotatic radiotherapy. I was disappointed initially because I though the tumor in my left front lobe could be handled in one targeted shot of radiation. The docs said that at 2.6 cm the tumor was too big for that and there would be better control with surgery followed by radiation, but Steph's tumor was larger than that and she had SRS, or one shot.

Let us know.

Joan

[Chelee]

Hi Kris,
I can't offer any advice that would be helpful...but I can say the word unremarkable is one of my favorite words since dx with bc. So your right...that is a positive on your MRI report.

Your in good hands here with your her2 family...I know they will give you good direction and advice so you can get this all behind you. Keeping you in my thoughts and prayers.

Chelee

[krisvell]

I just want to thank everyone again. I feel more hopeful and have a lot more knowledge than I did earlier this morning when I got the bad news. Thanks to all of you, I can sleep tonight.
A grateful HER2 Support Group member. You all have been so helpful to me.
Kris....

[mamacze]

Awww Kris...as you know I am just heart sick with this new development....
I can't believe Kavy too has been diagnosed with Brain mets...sometimes I feel like we are all in the Twilight Zone.

I just spent the last 10 minutes searching for a fabulous thread that StephN posted in 2005 with pictures of her gamma knife. I couldn't find it. StephN, if you read this...did you not post pictures of your procedure? I thought it was incredible; I remember feeling riveted at the time...is it still on this board? Or did we lose it during the transition?
Also, during my search I reread StephN's comments about steroids...I have not taken them, but I seem to recall that they can have challenging side effects....of course you may not have to deal with this so forgive me for jumping the gun.
As you get more info from your doctor, remember to touch base with Brenda (Hutchibk) too as she has had much experience with brain mets. Stay with us. God speed this week.
Love Kim from CT

[Trish]

Hi Kris
I've been researching brain mets as I suspect I have a pretty high likelihood of developing them, in fact since I have never had an MRI I may be harbouring them as yet without symptoms. Rich posted a really good review article last year. I think I brought it up when I searched "Whole Brain Radiation" or "Brain Mets". I'm sure you are in good hands and will get the best treatment available.Thinking of you and hoping that your treatment is as efficient and effective as it has been for so many on this board.I'm really impressed by your ability to go forward with the next step-but then I guess that is no big surprise as you DID run the half marathon last year to my great admiration.
Trish

[Ceesun]

Kris, My prayers and good thoughts are going out to you. Stay strong. Ceesun

[Lori R]

Kris,
So sorry to hear of the new challenge. It must be reassuring that some of our sisters have had directed treatments a number of years ago (that much more experience and refinement) AND are still doing very well.

Here is to a restful evening.

More hugs coming your way....Lori

[Ellie F]

Kris
I was so sad to read this news it broke my heart.
Please try to hang in there till you can clearly find out about your options.As others have said there are many who have done really well after treatment.
Please let us know what happens.

Love Ellie

[joyce lutz]

Sorry to hear the news however if I knew then what I know now I believe my daughter would have opted for gamma knife surgery from the git-go. Therefore, since it seems you have just one tumor in the brain ask about it (or other SRS type) rather than whole brain radiation. My best to you
Joyce

[krisvell]

I just want to thank all of you again. I can't tell you how much this has helped me on so many levels. I feel that when my husband and I go to the Oncologist tomorrow that all of you will be with me too in support, encouragment and advice.
From the Bottom of my Heart, I am truly touched by your generousity. I will keep you all posted.
Sending my love to everyone.
Kris...

[LoisLane]

Kris Thinking of you and your family. Glad this was all checked out so quickley and now it is time to rid of the pesky bugger!! You will continue to be well and be there for oh so many more of your son's birthdays. Take care kris, very impressed about your marathan success. Stay strong and positive. Best wishes Lois.

[Bill]

Kris, for what it's worth, my thoughts and prayers are with you. You are one tough girl/gal/Lady/woman/cookie/female/warrior-woman/lass/fine-specimen/whatever is appropriate here in the Northeast. You hang in there and please keep us posted. You're a fighter.....not a quitter....and that's what you have to keep in mind. Fight the good fight. Love, Bill

[Rich66]

Some info HERE (http://her2support.org/vbulletin/showthread.php?t=42084)

[Jackie07]

Kris,

We'll be thinking of you tomorrow.

[Jean]

Kris,
I am sorry to read your post...I am glad that you are on top of the situation early. My prayers will be with you
tomorrow. Please update us on your visit. My prayers are that you will run past this.

Hugs,
Jean

[chrisy]

Kris,
Sorry, I know that was not news you really wanted to get, but I applaud your quick action to find out what was going on, because now you can formulate a plan. As you know, there are options.

I had to smile at your observation of the number of "no'' and "unremarkables". In this context it's so good to be unremarkable - but the way they word that is so odd, isn't it? Because of course, you ARE remarkable!

Take care, and keep us posted on your plan

[Kavy]

Hi, Kris,
I'm so very sorry for your news, I 'm going through the same the same thing right now. Hang in there.
I decided against WBR, and tried to do just gamma knife, but the radiation oncologist said the tumor was too big, and could cause problems, inflammation with the Gamma, so he sent me to a neurosurgeon, then I saw another neurosurgeon, and I also send my CD Scan to Stanford, because I wanted to do the Cyberknife instead, and they said I should have it removed before doing Cyberknife. I have 2 tumors, cerebellum 2.8cm, and occiptal lobe 1.9cm, and the neurosurgeon will remove both this week, then gamma knife the 3r one 4mm, and the tumors bed in 2 weeks.
I hope you can get just the Gamma knife, but I suggest you to send your cd scan to different places that does different SRS, before making the final decision.
Hugs and prayers,
KarlaV.

[michka]

Dear Kris. Just a few words to say I am thinking of you. I hope the appointment with the oncologist went well and you have a good plan. Hugs. Michka

[Mary L]

Kris, I too am praying for you and I wish you the best. Mary L

[schoolteacher]

Kris,

You are in my prayers. I have been away from the board taking care of my mom. Let us know what is happening.

Amelia

[krisvell]

I wanted post an update and thank everyone for being there for me. Sorry to be dragging you thru my drama.
The oncologist called me this morning and told me "not so fast" to be jumping that it's brain mets. She told me mets typically presents differently:
- more than one
- in brain parts other than the stem where mine is (know this is sucky location)
- accompanied by swelling and there is none so far
Something has to be done, 'cause I see two of my husband when I lay down. Trying to have fun with that and pretend I'm hugging the invisible husband that I see.

They are presenting it to the Tumor Board which meets on Wed. So I'll have to cool my jets until then and they are ready with something as far as a diagnosis/procedure. She told me to hang in there.
Kris....

[Ellie F]

Gosh Kris,I will be praying that it's something else that's b9! I have checked the board all day waiting to hear the outcome. I will keep all my fingers (and toes) crossed till WednesdayPlease let us know.

Hugs Ellie

[Joan M]

Kris,

I had only one brain tumor in the left frontal lobe. It was 2.6 cm and there were no others. And even at that size I had no swelling.

Glad to know that your oncologist seems to be on top of everything and that they're checking very carefully.

Joan

[krisvell]

Joan,
Thanks for letting me know that. It will keep me from getting too hopeful and more realistic. I am just hoping to get the same outcome that you have. You're inspiration to me.
Kris....

[Trish]

Whatever it is it is great news that it is so focal. My sister had an acoustic neuroma (a benign brain tumour on the brainstem) nearly 30 years ago and about 10 years ago there were signs of regrowth. This was treated stereotactically-which was quite controversial at the time. I find that interesting since it still is controversial here for brain mets. It sounds like you are in good hands and I'm glad your sense of humour is intact. Hoping for things to go well,
Trish

[Pam P]

Kris - I've been reading your posts and updates and want you to know I admire the composure you seem to have through all this waiting. I pray you get clear answers soon on how to treat this. You are in my thoughts. There are so many here with experience and good advice and good outcomes for hope. Pam

[CourtneyL]

Adding my voice to the chorus of support for you, dear Kris. I too have been battling brain mets. I hope that yours turn out to be nothing. I just wanted to add that I have had tumors in my brain stem and they were not accompanied by any swelling or inflammation. So it is possible. If yours turn out to be brain mets, know that they absolutely can be treated successfully with Gamma Knife. I've been experiencing double vision as a result of another tumor found this past December. I had it Gamma Knifed two weeks ago and my vision is already improving. I hope yours does the same. Know that we are here to offer support and to help however we can.

[StephN]

Hi Kris -

Hope they will offer you a brain PET, which would show the activity level of that spot which they are unsure of.

We had other members here with a met on the brain stem area that were treated.

I know you will get news tomorrow and it will be the opinions of several minds. But, remember, not all clinics have seen EVERYTHING. Sometimes you have to listen to your "innerds" and keep asking questions.

[Catherine]

Kris, Thinking of you and thinking of all the wise people who have posted such great information. I got a smile out of you having fun with the invisible 2nd husband. Hang in there and as Bill says, "fight the good fight." I hope the weather back East calms down and you guys can all warm up. Hoping for good news for you.

Hugs from rainy Oregon,

[krisvell]

Thanks again everyone. StephN; I just added Brain Pet to my list of questions. I just had a full Pet scan in July ’10. A lot of sh** can happen in a short time or they miss stuff. CourtneyL: I now know that brain stem mets can be treated successfully. What I was reading didn’t sound promising.
It looks like the Gamma Knife is the preferred method. I know in Ct the only one hospital; Yale has the Gamma. It’s out of the area where I am being treated but my Oncologist is great and would send me to the best place.
Sitting here waiting for the phone call, I am reflecting how grateful I am to all of you to share your knowledge and give support. I can’t imagine another place to get this information. The HER2 site and members are a treasure.
Kris....

[Sandra in GA]

Kris,
I have been away from my computer and was shocked to read about your problem this morning. This is very upsetting for me. You are such a positive and precious person. I am praying that this will turn out to be something other than a met and can be treated easily and successfully.
Love and Hugs,
Sandra

[Delaney]

Kris,
thinking of you.

[krisvell]

Well, my oncologist called me and said that it's most likely a metastasis. Because of its location (brain stem), they can't safely biopsy it so they're going to move forward on the basis that it's cancer. Though it doesn’t have the characteristics of a malignancy. I want to believe that it's not but have accepted the fact. Either way, somethings got to be done. She's going to get a 2nd opinion from a HER2 oncologist at Dana Farber.
I've already started to get the ball rolling on the Gamma Knife at Yale. Electronic medical records and transferring between institutions can't come fast enough. I have to fetch all my records and get them on CDs for Yale.

Thanks again...

Kris...

[KirisMum]

Oh Kris, you are in my prayers. I hope they get this thing zapped and you are back on your way to health in short order. It's encouraging to read that it doesn't have the characteristics of a malignancy. Just keep moving forward and keep us posted. I will be thinking of you.

[KDR]

Kris,
I have a feeling...a good, good feeling...all might not be as it seemed, based on what your doctor reported back. Please keep us posted, we are all in it with you. Lot of power there!

[LoisLane]

Dear
Kris I have been thinking about you all day knowing how you would be feeling about
getting that call. You sound like such a strong girl but I know also this is so dissappointing for you. However as you said something has to be done about this and you are now going to move forward with the best medical care possible. I am going to ask for strength for you and the peace of a yellow healing light to enter you Kris. I will ask for that healing light for you everytime I can summon it. Take care my darling girl you are going to do well.

[joletta]

Hi kris,
i have been thinking of you. I want to let you know to please call me if you need any info about yale or would like any recommendations on doctors. I am so sorry you have to go through this however if you go to yale i think you will be very happy with the care you will recieve and the knowledge and compasione of the doctors. Please know i am very close by and will meet you for any support you need. You are a very strong women and you will get through this.
Joletta

[bejuce]

Hi Kris,

Thinking of you too. Hope everything will turn out fine.

Praying for you,

Marcia

[Sheila]

Kris
I was shocked to log on and read your latest development. So glad you are on top of things...there are many brain met survivors here that can answer many questions. Stay strong, we are with you on this bump in the road journey...you are in my heart and prayers for successful and fast treatment.

['lizbeth]

Oh crap Kris,

Sandra GA told me about your bad news. I am so sorry that you have to be treated for brain mets.

I'll be praying for you - that the radiation zaps those lil buggers gone and you be returned to good health soon.

Sending you love,

'lizbeth

[Kavy]

Hi, Kris,
I'm sorry to hear they think it is met, but the good thing is that there is not met characteristcs, so it might not be, and this is a hopeful possibility. It is good though that your oncologist want to do something right away. I think Gamma knife is a good choice for you. Your oncologist is great, I'm so happy he is guiding you and on top of things for you. Hang in there.
About Pet scan, I also had one in June 2010, it did not show any mets, and I thought my brain was clear. Then one radiation oncologist said that brain mets does not show on PET scan. Did you know that?
I'm having Xknife for the 3 tumors next Wednesday,
so we will both hold hands and walk through this together. Count on me. I will let you know how everything goes with me.
Love,
KarlaV.

[Jackie07]

irsa has a nice link on Gamma knife radiosurgery:

http://www.irsa.org/metastatic_tumors.html

Sending you good vibes.

[krisvell]

Hi all;
The Ct. Snow storm (another foot) yesterday had me in despair getting an appointment lined up for the Gamma Knife. Thought I'd have to travel to Dana Farber but Yale came thru. What another day makes, I got a consultation and tentative gamma procedure for next week. I also had a PET scan and they didn’t find any other spread. Funny, it didn’t pick up the brain lesion. So I’m just dealing with the cashew size lesion on my brain stem. I never would have thought only one met would make me grateful.

I still can’t believe how inefficient it is to get medical records sent to another institution. I was driving around fetching the CD images so I’d have them for next weeks appointment. Now I know I should always ask for a copy when I have a scan done. I work in IT for a healthcare company and see lots of opportunities for improvement. I have a feeling that HIPAA has a lot to do with it.

[Sandra in GA]

Kris,
I am so glad you have everything lined up to get rid of that "cashew"! Cashews are good to eat, not have in your brain steam!

Hugs,
Sandra