Al is right, check the brain, Can you help me?

My name is Johanna from Iceland. Some days I complained about headache and Al was right. They found brain mets!!!!!!!
Im in a complete shock. I have 8 small lesion, very small the onc says. I will have to have radiation ten times in the beginning and then a check.
DX jan2002 in remission for 31/2 year until last july, bone mets (wll managable) with navelbine and Femara (Im weakly er+ but high pr+) Suddenly a lesion in the liver. Very good results with herceptin and TAxotere. All gone after 16 times. Fine and gone from the liver.
And now this, its getting too much.

What about Tykerb? Will it help besides the radiation. Im told there is a possibiliy of complete vanish with radiation in brain but will it come bask?????

I have asked for Tykerb as a compassionate use and the doctor promise to help me get it if possible. Can you advice me ?????

[michele u]

Johanna, did you get Herceptin right awaY in a trial? I don't know how Iceland is about the medical care there. Push hard for Tykerb. You should qualify for it

I just started on Herceptin in februar this year with the liver mets.

I will push for tykerb but how will it help me? I respond very well to chemo so i can be a good sample, who knows, but there is no connection here in Iceland but we will use all means. I´m a journalist and will write what is needed.

Will the Radiation do something? I need a role model now. Give me a hope.

But im surprised that everybody took little notice on my cmplain. It was my sister who brought me to ER. I have started decadron 8 mg pr. day and I Feel much better and Im in a good shape for this ordeal and Im not giving in, but fight more

[Joe]

Christine 6 1/2 years, Stephanie 2 years, Lisa 2 years, JoJo 2 years, sorry If I missed anybody or are wrong about the time.

Regards
Joe

[al from Canada]

Johanna,
I'm glad I gave you advice but I'm sorry it turned that way.... I did an internet search and apparently, Iceland is involved in the Allos Efaproxyn trial. This is a radio-sensitizor given prior to WBR with an excellent safety and therapeutic profile. I have attached an article: http://www.centerwatch.com/patient/s.../stu70898.html
and here is the link to the company:
http://www.allos.com/ and although this site just talks to North America, phone them as a search did show Iceland.
After that, tykerb + xeloda would be the cutting-edge choice.
Sorry but this should be very treatable with small metastasis.
Good luck,
Al

[pattyz]

Johanna,

I've seen that Tykerb is available internationally and it has shown response for brain mets. I will be asking my onc about taking it as well...

My first dx of brain mets was Sept. '02. Since then, I've had several recurrances, but I have NOT done WBR. Mine (16 lesions) were treated with various focalized rads. So many times that any more comes with high potential permanent damage.

My latest recurrance of 8 lesions has responded very well to the combination of Temodar/Xeloda. Currently I am 'stable', as the size has not increased in six months, no new lesions. As long as I remain 'stable' with no symptoms, I can take a break from my chemo, so as not to become resistant to this good combination. But it is still scarey!

There are gals who have had success with WBR. There are others who still progress after WBR. But, they can then be treated with a focalized raditation. And now, we have a few small things in the way of drugs that can help, as well.

It is good that you have responded well to your other treatments, and that you are stable or NED in body. These are POSITIVES in your latest dx. of brain mets. This has been my experience, too.

I think if you did a search here, you would be inundated with posts concerning brain mets, treatments, successes etc.

Very best wishes to you,
pattyz

Love you all.

I will meet my doctor tomorrow and then this radiation will planned.
I´m confident and know there is a battle to win. Thank you very much for help, support and information. Here in iceland we have good facilitis, free hospitals, free medicine and so on. I dont have to think about trivials, I have salaray for 3 months, my union (I have been journalist for 19 years) will pay for another year etc. I have a very mentally strong husband, family and colleges in work. This is a pack. And of course I have a beautiful 8 year old son (Was 41 when he was born). So there is alot to take and get help from and besides this site that has been my support for last months. Of course ther is stats to look at, but I know that stats are only stats.
I´m mentally and physicly strong and all other tests are good, blood sugar. pulse and oxygen, blood pressure and so on. I have appetite good enough but hospital food is not Michelin star. I have been on this chemo for a year and I asked my sisters who are always with me whether they were not tired af all this. The other said I could have nice to have summer holiday and DO NOTHING but relax. So we have a summer holiday little bit later than planned.
The US Army is leaving Iceland after 55 years but I found an army in you.

Jóhanna

[R.B.]

Sorry to hear your news

You previously indicated interest in diet as a treatment adjunct.

Omega threes and sixes were one of the subjects discussed and you gave some indication of your diet.

You mentioned ground almonds as a paste on bread etc. I am not sure if you are aware nuts generally are high to very high in omega sixes. You aslo did not specify the oil you used in bread. Non virgin refined olive oil 50% of fats can be omega six.

http://www.nutritiondata.com/facts-B00001-01c20np.html

There is a book called "Smart Fats" by M Schmidt which looks generally at the brain and fat intake particularly omega three and six - one of the trials it quotes suggests that tumours compared with normal tissue are high in sixes and low in threes.

It is reported in mice that if the body is short of omega threes it substitutes similar omega sixes 22:5 n6 into the brain membranes. It is reported that these in some respects do not appear to be as effective as DHA which I presume they are replacing.

Carlson is a high DHA EPA Icelandic fish oil.

I am afraid there are no easy answers, - and it is enormously complex - as the trials have not been done, but you might want to do some further reading and discuss it with your advisors as part of a possible add on strategy for potential risk reduction.

http://www.ncbi.nlm.nih.gov/entrez/q...ition+of+human
ABSTRACT

1: Lipids. 1996 Dec;31(12):1283-8. Related Articles, 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.

PMID: 8972462 [PubMed - indexed for MEDLINE]

[heblaj01]

Johanna,

I hope you eventually will get access to Tykeb.
However if this is going to take too much time, ask your onc if in the meantime you could be a candidate for direct injection of Herceptin in the central nervous sytem as was recently & successfully tried on a single patient in Germany.

[R.B.]

And here is another general trial on the subject

Fats would seem to have a part to play.

RB

http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum
ABSTRACT

1: Neurol Res. 1987 Mar;9(1):38-43. Related Articles, Links

Membrane phospholipid composition and membrane fluidity of human brain tumour: a spin label study.

Hattori T, Andoh T, Sakai N, Yamada H, Kameyama Y, Ohki K, Nozawa Y.

Membrane fluidity in membrane phospholipids of brain tumours was investigated and compared with those of white and grey matter. Fifteen brain tumours including 5 gliomas, 5 meningiomas and 5 metastatic cancers were examined. These samples were frozen immediately after extirpation in liquid nitrogen. After extraction of total lipids from the tumour tissues, membrane phospholipids were separated and analysed by thin-layer and gas-liquid chromatography. The fluidity of the phospholipid membrane was studied by electron spin resonance (ESR) spectroscopy, using a stearate spin probe. The fatty acid composition of total phospholipid of brain tumours was characterized by an increase in linoleic and arachidonic acids when compared to the control brain. The percentage of palmitoleic acid was higher in gliomas and metastatic tumours than in meningiomas. Furthermore, in the brain tumour tissues, the decreases of phosphatidylethanolamine and phosphatidylserine and the increase of phosphatidylcholine were observed when compared with grey or white matter with the exception of meningioma. There was some difference in phospholipid membrane fluidity between brain tumour and control brain tissue. The order parameter calculated from ESR spectra became higher in the following order: metastatic brain tumour, less than meningioma, less than grey matter, less than glioma, less than white matter. These results suggest that the phospholipid metabolism in the brain tumour is different from that of the normal brain, and this difference may affect the alteration of membrane physical properties which exhibit in part the character of the transformation.

PMID: 2883605 [PubMed - indexed for MEDLINE]

[StephN]

... but join the club. Yes, as PattyZ mentioned, if there is no active cancer in the rest of your body, you have a good chance of conquering the few brain mets you have. Especially at their size.
This also means that you will be monitored by brain MRI every 2 or 3 months for the foreseeable future to catch any more that might show up in an early stage. It is good that your body gave you some warning with the headache. My body gave me NO warning with symptoms and I had a met get rather large that is giving me some problems later.

Looks like your support at home is very strong and this will help.

As far as RB's information on the fatty composition of various brain tumors, I am trying to figure out if it is good to intake the nuts and things, or if I should lay off them. This fatty acid thing IS rather complicated and I have a hard time just focusing on the long names. I do take my flax seed oil daily and it is balanced between the omega 3, 6 and 9s. ALso use a lot of high quality olive oil.