I don't know what to say other than HELP !!!

[kiwigirl]

I'm sorry guys but I need help. No longer ned i have BM 3 in fact poss 4 and may be some small bone. Just waiting on ct results for rest of body.

i finished my trial with the UW Vaccine group and went home had last herceptin 16 Dec 2010. My brother then got head neck cancer and is now being treated. I thought i was fine so had my port taken out 20 DEC 2010 then dad had massive heart attack he has three stents in and is on the improve. I can't tell him yet..

Any way had head aches started 14 Jan 2011 went to onc and doc and sergon all said hormones then went to hospital on thursday and had ct and it is brian mets one very large and now on dexamethasone and feel unstable. So scared at moment don't know what to do. i can't go home as i don't live in city and they are worried about cieser. hope to go home tomorrow. Any help would be great. thanks Jacqui

I had no signs of BM other than headaches may have been there a while and when i first had treatment no head ct. Just hope vaccine worked and it is now where else in body.

PS sorry about spelling

[bejuce]

OMG, I'm so sorry to hear this! I hate, hate, hate this disease!!! Don't know what to say except to offer my support and hope that a good treatment plan will zap those
mets fast (Gamma Knife?) once and for all so you can go back to NED soon.

Sending you many hugs and prayers,

Marcia

[ElaineM]

I don't have any advice. I just want to say I am sorry. Take good care of yourself.

[Trish]

Sorry to hear all that sad news Jacqui. I hope you get appropriate and speedy treatment for those brain mets. I hope targeted radiation is available to you in some form. Will keep you in my thoughts.
Trish

[Mel3]

I'm sorry to hear this terrible news. You will be in my prayers.

[michka]

Kiwigirl, what sad news. I can imagine how you feel. I hope your scans will show no other mets and that you can concentrate on a plan to blast those BMs. I'll be looking for your next post and keep you in my thoughts. Hugs. Michka

[kiwigirl]

Gosh just to now that there are so many brave people out there who have been through this helps and i love the support. Thank you all. I've had a glass of wine and am really trying not to stress about tomorrow. As they say you can't change it but i really really want something to go right soon!

I'll have to email Doreen and Dr Salasa at the UW but i feel sad for them as I hoped this would help others. It does not seem to cross the blood brain barrier.

Lets find a cure soon.. Jacqui

[krisvell]

Jacqui;
I am very sorry to hear about your BMs, your brother and
Dad. Please know that I'm praying for all of you.

I too was just dx with the same. I just finished the first Gamma Knife treatment this week with the last blast on Mar 1st. They are saying it has a very good response (control rate).
Please try to hang in there. Amazing things can be done. I'll send you the links of threads on BMs that may be informative to you.
Hugs and prayers;
Kris...

[Mary L]

Jacqui, sorry to hear the news. I hope they can blast those bm and have you back to ned. I send you my best wishes. Mary L

[Lori R]

So Sorry to hear the news of a set back and new challanges.

With your Kiwi spirit and the support of your family (beautiful picture), you will win this war. Just break it down, one step at a time.

So many sisters on the site have had great/fantastic success with treating the brain mets. A little Zap here and another zap there and you will be good to go.

Keeping fingers crossed that the University of Washington Vaccine keeps the rest of the body NED.

Then....you are done. Back to NED.

Lori

[tricia keegan]

Jacqui I'm so sorry to hear this, many of the members here have overcome BM with good success and I pray the same for you.
Stay strong (((((hugs)))))

[AlaskaAngel]

You said exactly what needed to be said. It is hard not to be able to go home -- Have you gotten any more information about when you might be able to?

I hope you and your family are not also suffering effects from the disastrous weather this year along with everything else.

As was mentioned, hopefully the vaccine is helping elsewhere in the body, given the effort you have put into getting it. You sound like quite a determined person to me.

All the best,

AlaskaAngel

[kiwigirl]

I should be able to find out if i can head back home today. Thank you all so much i am determined but this has taken the wind out of my sails .

Its hot and humid in NZ we have had a few cyclones go through lots of rain. off and on then the humidity is back.

It sound like we don't do gamma knife here i would have to go to Honolulu. I'll keep looking my largest BM is 3.7cm in the right side posterior because of this size does that mean wbr?

Kris any info would help lets get through this .... all the best to you.

I'm feeling better of to radiology onc today i'll be pleased when thats appointment is done i don't know if i want to find out more.

take care Jacqui

[Patb]

My thoughts are with you as you go through this. I
hope you can find the right treatment and get it very
soon. I am sending healing thoughts across the miles
and wish you the very best. Try to stay calm (easier
said than done) and get a plan in place.
patb

[Joan M]

Jacqui,

I'm sorry to hear about your brain met and the medical challenges your brother and father are also facing.

I too had a brain met which was 2.6 cm and surgically removed. About 6 weeks after the surgery I was treated with targeted radiation, which involved only the area of the tumor. Other women on this message board have been treated without surgery and only targeted radiation or Gamma Knife. My tumor was removed in October 2008 and everything has been okay since then. I just had a routine brain MRI on Friday and all still looked good.

Here's a recent post on this message board about dealing with brain mets:

http://her2support.org/vbulletin/showthread.php?t=48248

Joan

[KirisMum]

You will be in my prayers, Jacqui.
I wonder if in addition to surgery they will try lapatinib or one of the other antibodies that targets HER2+ tumors and crosses the blood/brain barrier.
There is lots of hope yet. You are in my thoughts and my heart.

[kiwigirl]

I have been spoken to about TDM-1 i do not know if i meet the criteria.

No gammer or cyber knife in nz just wbr. Thank you all for all you prayers and support.

[Joan M]

Jacqui,

It seems that some hospitals in New Zealand have Gamma Knife according to these articles:

http://www.healthcareitnews.com/news...nstall-web-pas

http://www.modernmedicine.com/modern.../detail/702751

Oncologists have a tendency to recommend wbr even though other procedures work well. Wbr has been the standard of care for many years, but that is changing, especially if there’s only one tumor in the brain. Sometimes surgery is performed and then followed up with targeted radiation (targeted means it just targets the area of the tumor, not the whole brain). Other times a drug like Lapatinib is used because it's supposed to be able to cross the blood-brain barrier, as was mentioned above.

I don't know how your insurance works, but are you able to get an appointment directly with a radiologist at one of these hospitals? The radiologist would be able to tell you whether Gamma Knife has been used for brain metastases.

T-DM1 doesn't seem right to me in your situation, since I believe you would have to fail several treatments for advanced breast cancer before you could qualify, among other things, like the trastuzumab (Herceptin) molecule doesn't pass through the blood-brain barrier. But some of the ladies on this board who are in that trial would be able to give you better information than I can.

Joan

[Jackie07]

Jacqui,

For a tumor that size, you're most likely going to need surgery before some type of radiation treatment. Any surgery carries risks. There are several members on the board who've had successful brain surgeries. My brain tumor(s) is not related to breast cancer, but I thought sharing my experience of a 23-hour brain surgery might give you some encouragement.

It's very possible that you will only need some type of radiosurgery(see http://www.irsa.org/index.html). Tykerb is a smaller molecule that can penetrate the blood-brain barrier, and I think your doctors probably will have a good plan combining those treatment.

[Trish]

Jaqui
You can also ask about stereotactic surgery or IMRT which is Intense Modulated Radiation Therapy. I think they are more generic terms for targeted radiation. All the very best. It is so difficult processing with all the information coming at you on top of everything else you have to deal with. Take care
Trish