~Ned Is Over~Aggressive Brain Met Activity~PLEASE READ MY BRAIN SPECIALIST FRIENDS

[Believe51]

I guess maybe he was not NED at all but we did acheive that status according to all those scans to come to that conclusion. The brain is a tricky thing and the scan on 8/16 showed 6 mets ranging from 9-6mm. One of them appears to some 'blooming artifact' suggesting minimal internal hemorrhage. This met rpresents the one with most surrounding edema. The total report was disheartening for us and totally unexpected.

part of that report:

"New metastic disease in the brain. One foci in left centrum semi-ovale demonstrates signal characteristics suggests small hemorrhage. This represents the lesions with the most surrounding edema. Despite these lesions, no mass effect is apparent at this time. There is also a lesion seen in the inferior aspect of the pons."

Ed got a call from the nurse bumping up our appointment and I was the one who called. She only told me that "The doctor asked us both to be there to console one another, it is not the best of news"

WE ARE SEEING THE DOCTOR TODAY AT 1:00pm eastern time! The only reason I got this report was that I was NOT going to wait overnight.

I have no tears left today.

I am asking for any advice, suggestions, thoughts or questions for the doctor.

I am sorry if I made anyone sad reading this but now we are desperate and limited with options.

Tell me what is on your mind after what you have read here today. I will take him anywhere and do anything I need to do. Give me some ammo My Heros!>>Love and Hugs>>Believe51

[Sheila]

Oh Marie
My heart aches after reading your post....just know that there is hope after brain mets, with many people here as living proof....you will be in my prayers today as well as Ed that this too shass pass and Ed will reach his NED that you so truly deserve. Many angels are looking out for both of you!!!

[Mary Anne in TX]

Hi Marie!
I know this has been horrible news for you and Ed. I so admire your willingness to go and do whatever it takes. Sometimes, it takes just that. I don't know of a facility close to you, but I'll pray that the angels bring you just the right answer. And I'll pray for you and Ed to find some peace in the insanity! Much love to you both, ma

[karenann]

I know that Christine and Joe probably know the best docs, but here are a couple of things I have come up with. Dr. Black at Cedar Sinai hospital in Los Angeles and Patti Z who has had a time of it with brain mets and I think has ned status now and for a while. Esther is another person who has had success with brain met treatment and I think Dr. Black treated her.

Both of these women I have mentioned are part of the Her2 Support Group.

I am praying for you and Ed, Marie. Please don't loose hope.

Hugs,
Karen

[Gerri]

Don't lose heart Marie, you will get the answers you need right here. Please let us know what you learn at your visit today.

Take good care,

[Believe51]

....just took the Ned dancing shoes off and put back on the armor. I am ready for war. Cannot believe the nasty bastards are back!!>>Believe51

I WILL ALWAYS BELIEVE!!

[Joe]

Marie,
Don't panic. Gamma Knife Surgery is extremely effective for threating these new mets.

It done on an outpatient basis and takes about four hours from start to finish. Most of the time is spent waiting.

Look for a good Gamma Knife Surgery unit in Boston. You may also have your oncologist contact Dr. Nancy Lin of Dana Farber who has done extensive work with CNS tumors.

Warmest Regards
Joe

[Margerie]

Marie,

I am so sorry to hear you and Ed have to ride the emotional rollercoaster again. I wish they would just close that dang ride! You both are mighty and strong and WILL get the best care for those little buggers. I hope you get good answers and a good plan. Will be thinking of you both!

[TriciaK]

Dearest Marie and Ed: I don't have any answers for the brain met situation, since I haven't been on that particular roller-coaster (Yet?) but I want to remind you how much you both are loved and admired. Others here will have some answers. How can you lose with people like Joe and Christine on your side? All the prayers we are sending out on your behalf surely will be heard. Remember, Faith and Fear cannot coexist, so rev up the FAITH! You have been such an example to us here of your faith, so I know you can do it. You are first class warriors! All the love and hope you have given to us on this site will bounce back to you now. God bless you with peace and calmness as you meet with your doctor. There will be a way, and you will find it! Hugs, Tricia

[hutchibk]

Marie - I concur with Joe! Please don't panic. Targeted radiation is a formidable opponent to nasty brain mets (gamma, cyber, stereotactic - all basically get the same result and my rads onc told me not to buy into the sexiness and outrageous expense of proton beam - it is better for other things than brain mets)! If any of the spots are operable, that is also an option. And we have Tykerb/Xeloda which have worked wonderfully for me and many others... there is also Whole brain radiation to consider, but for me personally, I have steered away from that option for now and will save it on the back burner for a last resort.

Brain mets just aren't the beast that they were even 5 years ago. We have so many options and more on the way.

Here's all the questions I considered and asked when mine were diagnosed 18 months ago: (some are basic and obvious, of course - and you already know)

1. sizes and locations of the lesions?
(what brain or body functions might they affect and when could that happen?)

2. swelling around any lesions?

3. are any operable?

4. are there any new spots in the torso?

5. how quickly are they likely to grow? (my rads onc felt that mine would increase at the most by only about 10% over a month or 6 weeks if at all in that short period of time... that was good to know as I took time to formulate my sinister plan to squash them)

6. Can you do a combination of treatments? (a hypothetical plan might be: operate on the most ominous one and target radiation on a couple others and start Tykerb/Xeloda to see if you can get response from that before zapping too many parts of the brain - you get where I am going...)

7. If there is also progression in the torso, what chemo regimen will work to both cross the BBB and treat the torso? (It's looking like in my case, Tykerb/Xeloda has treated the brain, protected the body and kept me nice and stable, except for one bone met in this iliac wing that we have stablized with Zometa. But if we see any progression below the neck, we will probably add Herceptin back in for a try.)

And if I can think of any other questions that I asked, I will add them...

Best of luck and let us know!

[R.B.]

Beleive51,

I hope your 1000th post is better news. I am so sorry to read your news.

This sounds so trite but every little helps.

Below I copy a trial which suggests there is evidence that brain tumours show a fatty acid imbalance and have a higher fat uptake than normal cells. There is also limited evidence Omega 6 may promote growth and DHA and EPA reduce it through Cox2. Uptake will reflect a combination of dietary and stored fats.

So food for thought as to whether it is worth increasing long chain Omega 3s (fish Oil) and reduce omega 6s (primarily the common vegetable oils sunflower, soy, grapeseed etc) which are found in lots of foods.

Infusion is a way of getting the DHA EPA to the body more quickly and there have been some trials in cancers.

Clearly it is essential to discuss dietary change with your doctors and more so in treatment. They may find the trials thought provoking if nothing else.

I am sorry I cannot be more specific but there appears to be only a limited amount of research on the subject. The Greek Diet Thread has much more on the impact of Omega 6 and 3 on BC if you have not already seen it. http://her2support.org/vbulletin/showthread.php?t=24410

RB


This is a link to a search on NCBI for brain tumour and DHA.
http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&cmd=search&term=Brain%20tumor%20DHA


1: Lipids. 1996 Dec;31(12):1283-8.Links
The fatty acid composition of human gliomas differs from that found in nonmalignant brain tissue.
Martin DD, Robbins ME, Spector AA, Wen BC, Hussey DH.

Department of Radiology, University of Iowa Hospitals and Clinics, Iowa City 52242, USA.

To compare the fatty acid composition of tumor tissue from glioma patients with that of normal brain tissue, tissue samples were obtained from 13 glioma patients and from 3 nonmalignant patients. Following lipid extraction, total fatty acid composition was measured using gas-liquid chromatography. samples were further separated into phospholipids and neutral lipids. Representative samples were then separated into phospholipid classes by thin-layer chromatography and the fatty acid composition assayed. Levels of the polyunsaturated fatty acid (PUFA) docosahexaenoic acid (DHA), were significantly reduced (P = 0.029) in the glioma samples compared with normal brain samples; mean values were 4.8 +/- 2.9% and 9.2 +/- 1.0%, respectively. This reduction in glioma DHA content was also observed in terms of phospholipids (4.6 +/- 2.1% vs. 9.6 +/- 0.8%, P = 0.002). The phosphatidylserine and phosphatidylethanolamine phospholipid classes were reduced in the glioma samples. Differences were also noted in the n-6 PUFA content between glioma and normal brain samples. The glioma content of the n-6 PUFA linoleic acid was significantly greater (P < 0.05) than that observed in the control samples in terms of total lipids. Thus, the fatty acid composition of human gliomas differs from that found in nonmalignant brain tissue.


1: Clin Exp Metastasis. 1993 Mar;11(2):141-9.Links
Intravenously injected radiolabelled fatty acids image brain tumour phospholipids in vivo: differential uptakes of palmitate, arachidonate and docosahexaenoate.
Nariai T, Greig NH, DeGeorge JJ, Genka S, Rapoport SI.

Laboratory of Neurosciences, National Institute on Aging, National Institutes of Health, Bethesda, MD 20892.

This paper investigates the incorporation of intravenously (i.v.) administered radiolabelled fatty acids--[9,10(3)-H]palmitate (3H-PA), [1-14C]arachidonate (14C-AA) and [1-14C]docosahexaenoate (14C-DHA)--into intracerebrally implanted tumours in awake Fischer-344 rats. A suspension of Walker 256 carcinosarcoma tumour cells (1 x 10(6) cells) was implanted into the right cerebral hemisphere of 8- to 9-week-old rats. Seven days after implantation, the awake rat was infused i.v. for 5 min with 3H-PA (6.4 mCi/kg), 14C-AA (170 microCi/kg) or 14C-DHA (100 microCi/kg). Twenty minutes after the start of infusion, the rat was killed and coronal brain sections were obtained for quantitative autoradiography and histology. Each fatty acid showed well-demarcated incorporation into tumour tissue. Areas of necrosis or haemorrhage showed no or small levels of incorporation. The ratios of incorporation into the tumour to incorporation into contralateral brain regions were 2.8-5.5 for 3H-PA, 2.1-3.3 for 14C-AA and 1.5-2.2 for 14C-DHA. The mean ratios differed significantly between the fatty acids (P < 0.01). 3H-PA was not incorporated into necrotic tumours despite the presence of an open blood-tumour barrier, indicated by extravasated horseradish peroxidase. The incorporation rate constant of 3H-PA was similar for small intracerebral and large extracerebral tumours. The results show that 3H-PA, 14C-AA and 14C-DHA are incorporated more readily into tumour tissue than into brain, and that the increase is primarily due to increased utilization of fatty acids by tumour cells and not due to a high blood-tumour permeability. The relative increases in rates of incorporation for the different fatty acids may be related to lipid composition of the tumour and to the requirement of and specific role of these fatty acids in tumour cell growth and division.

1: J Lipid Res. 2005 Jun;46(6):1278-84. Epub 2005 Mar 16.Click here to read Links
Role of omega-3 polyunsaturated fatty acids on cyclooxygenase-2 metabolism in brain-metastatic melanoma.
Denkins Y, Kempf D, Ferniz M, Nileshwar S, Marchetti D.

Department of Comparative Biomedical Sciences, School of Veterinary Medicine, Louisiana State University, Baton Rouge, LA 70803, USA. ydenkins@vetmed.lsu.edu

Cyclooxygenase-2 (COX-2) is important in the progression of epithelial tumors. Evidence indicates that omega-6 PUFAs such as arachidonic acid (AA) promote the growth of tumor cells; however, omega-3 fatty acids [eicosapentaenoic acid (EPA) and docosahexaenoic acid (DHA)] inhibit tumor cell proliferation. We investigated the effects of omega-3 PUFA on the expression and function of COX-2 in 70W, a human melanoma cell line that metastasizes to the brain in nude mice. We show that 1) tumor necrosis factor-alpha upregulates the expression of both COX-2 mRNA and prostaglandin E2 (PGE2) production, and 2) omega-3 and omega-6 PUFA regulate COX-2 mRNA expression and PGE2 production. AA increased COX-2 mRNA expression and prostaglandin production in omega-6-stimulated 70W cells. Conversely, COX-2 mRNA expression decreased in cells incubated with EPA or DHA. AA increased Matrigel invasion 2.4-fold, whereas EPA or DHA did not. Additionally, PGE2 increased in vitro invasion 2.5-fold, whereas exposure to PGE3 significantly decreased invasion. Our results demonstrate that incubation of 70W cells with either AA or PGE2 increased invasiveness, whereas incubation with EPA or DHA downregulated both COX-2 mRNA and protein expression, with a subsequent decrease in Matrigel invasion. Taken together, these results indicate that omega-3 PUFA regulate COX-2-mediated invasion in brain-metastatic melanoma.

[eric]

Marie,

I have nothing to add to the wonderful posts above except to offer my support as another person thinking of you. Hope you also get reasurring news from the doc.

Eric

[Barbara H.]

Hi Marie,
I would suggest contacting the Brain Tumor Group at the Brigham. Dr. Peter Black is an excellent surgeon and very compassionate. He has also written a book. You might be able to take a multiple approach.
Best wishes,
Barbara H.

[MJo]

I am sorry for your news. None of us here have any guarantees. But you two have beat back aggressive mets before. I've no doubt you will knock these out too. All the very best to you.

[Jean]

Dear Marie,
From all the previous posts especially by Joe /and Brenda you must be feeling a bit better and more in
control once again.

Please know you and Ed continue to be in my prayers
along with so many others on the board.

Knowing how you and Ed are such strong fighters,
those mets will get knocked right out of his head.

To say I am sorry to hear read your news today is putting it mildly...but please know I am sending you
huge hugs and much love.

Jean

[juanita]

I am so sorry to hear this. I will say EXTRA prayers for the 2 of you.

[DanaRT]

More and more prayers are coming your way. Keep the faith.

Hugs and more hugs,
Dana

[dhealey]

Marie, I don't have anything else to add that hasn't already been said. Just want you to know you and Ed are in my thoughts and prayers, keep up the faith and the fight. Best wishes!

[Chelee]

Marie, I can't tell you how sorry I am about the news Ed and you received. I'm glad you have already gotten some good advice here...but yet I feel so bad that you both have to get ready to fight this darned disease again. But if anyone can do this and beat it...its you two.

I will be keeping you both in my thoughts and prayers. Sending you a big cyber hug. Wish I could give you one in person.

Chelee

[Faith in Him]

Just sending my love and prayers also.

Tonya

[WomanofSteel]

Marie, sorry to hear you lost your dancing shoes. I have no advice for you, but I can offer you a big cyber (((HUG)))! I hope you and Ed find the help you need. Will keep you in my prayers.

[SoCalGal]

Marie-
I am here for you in LA w/extra bedrooms. My brain surgeon is out of Dr Black's office - I had the gamma at Cedars-Sinai. Cedars is 5 minutes away and UCLA about 15. USC is 20 and CITY OF HOPE 45.

Let me know how I can help. I am already praying.

[lexigirl]

Dear Marie,

Sending big hugs to you and Ed. It sounds like there are some great surgeons who will be able to treat the mets. I can't believe the b@#$$%$# had the nerve to come back either! Gamma is gonna get them!

Hugs and Prayers,
Lexi

[Liz J.]

Dear Marie & Ed,

Sending hugs, thoughts and extra prayers your way. You will get through this.

Sincerely,

Liz J.

[Becky]

Marie

My thoughts are with you and Ed. Stay strong. We are always here for you.

[Yorkiegirl]

Marie & Ed I am so very sorry to hear this new's. Please know that many prayers are coming your way.

[Patb]

So. so sorry but there are things to do as so well
explained in the post by Brenda, Joe, etc.. Please
know we care and you and Ed are in our heart of
hearts and prayers are headed your way. Take
care and know we are here for you.
patb

[Mary Jo]

Hi Marie and Ed,

I just popped in to see if anything is new and I came upon your post Marie. Ohhhhh, Marie and Ed.....what can I say that hasn't already been said. I'm sorry seems so trite and empty BUT I really am. However, reading the posts from those who know something about brain mets I feel encouraged for you both.

Sending prayers for peace and wisdom.

Love to you both,

Mary Jo

[Joan M]

Marie, There are survivors here dealing with brain mets and they're very knowledgable about how to control them. You and Ed are in my prayers, and you will get to the right person who will treat Ed effectively. Joan

[lilyecuadorian]

Marie , in Charlotte NC in carolina medical center they used the latest cutting edge technology NOVALIS ...if you need it dont worried about house,trnspostation , food ...and support ...you all have in my house ...

[Terri B]

Believe,

I wish I were closer to you so I could hug your neck. No words that I could say would lessen the pressure. Thinking of you and Ed...

your sister,
Terri

[Believe51]

How blessed I am to have you in our lives. The support has kept me strong and steady. ......Opening your homes to me, how beautiful; not to mention the sweetest most unselfish form of love you all provided us with when we needed it most. This news was as hard to take as the initial diagnosis.

I do feel better about things today and much has to do with you. Imagine that this recent Brain MRI was not suppossed to be done until 6 months per the Radiologist Oncologist???

I made Ed have an "Imaginary Headache" (hehehe) at 3 months and we discovered this EARLY enough. Ed's Oncologist was pleased to order this knowing I was being my demanding self AND because he too was not comfortable waiting that long. I will start a special post letting you all know the "War Against Brain Mets"

Thanks to all for this unconditional love and support.

And here is to being a demanding patient/caregiver, I just saved my husband's life by following in the footsteps of the best!!

PS: His doctor's reply to my "Sorry for being a demanding caregiver" was: ....."But in a good way"...hehehe!

[nitewind]

Love you two so much! You and Ed are always in my prayers.
Hugs

[pattyz]

Marie,

The best part of the report was: no edema or mass effect. That's a good thing, as you've probably heard from the doc by now.

My current 6-(8?) brain mets include one on my posterior brain stem, too. Most others are in cerrebellum. They are from 5mm up. Including three that are over 1cm.

I concur with what Joe and Brenda have said.

Mainly, you want Ed to be treated by a person/facility with MUCH experience when it comes to choosing the type of focalized rads.

When I had my 2nd occurance, those numbered 14. One on brain stem then, too.

Two headframe type SRS procedures were done...... leaving 6 mets to deal with. Those 6 were treated with CyberKnife in two sessions two days apart. (no headframe)

My current, (3rd occurrance), of 6-8 have been treated with mixed results with Xeloda/Temodar. Tykerb was added last fall, but I had some small progression after that.

My onc created my dosing schedule for me, from information I brought him. We have tweaked both dosage and schedule over the past THREE YEARS. My last scans, end of last month were read: No change. That is what I like to hear ;)

After the first four months on my X/T combo, scans came back at 50% shrinkage, twice! That was the best, ofcourse. Smaller shrinkages have been the more common. And slight progressions. And 'stable', no change.

WBR would not be in anyones thoughts at this point. Too soon since Ed's. If EVER again.

So, if Ed is not symptomatic at this point? You DO have some time to look around and see what is available in your own area.

That's my story and I'm sticking to it... 6 yrs with brain mets, refusing WBR all the way.

I know you will do all you can for Ed, finding and getting the best tx under all known circumstances.

xoxopatty

[Believe51]

Patty, your words are so important to me and I was so happy to see you once again rescue me. You are one of my inspirations!! Lots of Love>>Believe51

[hutchibk]

Yep! Patty rescued me as well. Her info was very interesting to my doc... and her path helped us plan out my path. Helped us see that there were lots of creative, individualized options beyond the standard of treatment, WBR... She is one of my heros, too!

[Ceesun]

Please know that I care about you both, Marie and Ed....one step at a time dear friends. You have received good advice here. love, Ceesun

[caya]

Marie

I am sorry to hear of this development for Ed - but I know you and he will fight the beast with all you have.

Sending prayers and hugs to you both.

all the best
caya

[Bill]

Marie, I'm sorry to hear the news about Ed. I've had trouble getting to the site lately. You and Ed have been through the wringer before. You are both very strong and tough and will get through this just like you've overcome many other obstacles. My prayers are with you, sweetheart.

[Ceesun]

Count me in on the prayers and best wishes. Ceesun

[goops]

I am so sorry - you guys will be in my prayers.

[jones7676]

I am so sorry you have to go through this.

What a wonderful group to support you through this (the people at this site are).

I can't add any info - but they certainly have given you many options to consider.

May whatever choices you make be the best!

[Kavy]

Marie,
I am so sorry to hear the news about Ed. Both of you are in my prayers.
Have you asked the doctor about trying Gamma/Cyberknife first before doing WBR?
I also have "imaginary headaches and back pains" so that I can get my brain and bone scans. Good job.
Hugs,
KarlaV.

[Jackie07]

Marie and Ed,

Sorry to hear about the brain mets. Did Ed have any symptoms? Please be sure for him to have plenty of rest. I am glad those 'mets' were caught early. Most likely either Gamma-knife or other treatment options can 'zap' them to non-existence or simply control them for a very, very long time.

I had Gamma knife in 2001 to treat 3 tumors that were over 1.2 cm each. And they are all well under control.

Will keep you all in our prayers.

[sassy]

Marie and Ed,

I am keeping both of you in my thoughts and prayers.