Help its spread to my Brain

[pattyz]

Carol,

I don't blame you for being worried about the wait for treatment, especially since you have symptoms. I 'presume' you are on a schedule of Decadron or similar steroidal medication? That is standard of care when symptomatic brain mets are found, while waiting for what treatment will be done.

It is not a care free drug, this Decadron. Comes with bothersome (hateful) side effects to most people. Yet, it does the job of controlling edema and pressure in brain, so that your brain mets symptoms can be managed for now.

I don't know what Ireland has available in the way of treatment options. Should you find that there is a large operable brain lesion or two, surgery could be one option.

That could be followed by a focalized radiation, like the Gamma Knife - CyberKnife - Linear Accelerator - a course of IMRT. Or, that could be your primary treatment, the focalized. They don't want to do that with more than four nor larger than 3cm tumors. Yet, if you do have more than four, the largest most troublesome could be done first. Then others could be done with a follow-up procedure/s.

You may have Whole Brain Radiation (WBR) pushed at you... I did. Many do. But I resisted, even in the face of a very 'upset' (mean) radiation oncologist. My partner was with me for all my appts. I do strongly feel his support of my wishes went a very long way in helping me attain the treatment I wanted. I maintained a calm attitude. Went with my research as backup to my concerns and treatment preference.

However, I must tell you that I have really been lucky, too. Having my other mets in control/NED, having minimal to no symptoms of brain mets during the first two occurances, being in otherwise good health... like that kind of lucky. As well as responding so well to the treatments I have had.

My Mri report from last week reads: No increase in size, no edema, no new lesions. The largest of current 8 is in my cerrebellum at 1cm. So, for now, my chemo is still working. My onc is really happy! Along with us, ofcourse. This means that we will most likely be taking a holiday for two months this winter, to warmer weather. Will keep up with treatment while away.

I hope this information will be of some assistance to you.

It's wonderful that you will be surrounded by family. Hoping you will have their help in getting 'settled' and while you are undergoing your appts and treatments.

My warmest wishes to you, Carol,
pattyz

[StephN]

Hello Carol H -
Sorry to hear of your plight, but very happy to hear you are getting some help from the members of this board.
As the others have said, this is not a "death sentence."

I am another surviver of brain mets. Been about 2.5 years now and there seems to be NO cancer activity there since I had the Gamma Knife about 2 years ago. (Only activity so far has proven to be NOT tumor, but radiation necrosis.) I am also otherwise NED.

My main tumor of two was also in the lower left behind my ear in Cerebellum. It was a rather large one at 3cm, but I had NO symptoms. The oncs did start me on the Decadron immediately as there was some evidence of resulting inflammation from that larger tumor.

I will have a routine MRI next Wed and see my rad onc on Friday for results. They are now following me every 3 months. After you get the MRI, the neuro docs should convene a "tumor board" and offer their expertise, which your onc will pass on to you. You may have more than one option, so feel free to come back to us with the report.

All best wishes for a smooth relocation to Ireland.

P.S. PATTY Z - Great news on your latest report! You do good work.

[Kim in CA]

Carol,

Just wanted to send well wishes your way too. As another brain mets survivor, just wanted to remind you about being a "Squeaky Wheel". Having been stage IV five years now, I know that tests can be ordered, and procedures done faster when you arm yourself with the facts and make alot of noise! Obviously the sooner you get after mets, the better.

Warmest Regards, Kim in CA

[R.B.]

I post this with trepidation.

I am not suggesting anything more than possible risk reduction. I know it sounds mundane but have you considered diet and particularly looking at balancing the omega threes and sixes.

It is reported that approximately 60% of the brain is made up of "fat" of which a significant proportion is DHA (long chain omega three)

In a book called Smart fats A Schmidt p146 it is suggested that DHA was low and omega six high in brain tumour tissue. The book cites three trial references. Page 146

Together with a book on depression The Natural Way to Beat Depression by Dr Puri it makes thought provoking reading as to the importance of fats to brain health and function.

There are lots of posts on this site on omega three and six.

Here is one link.

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

I must stress how important it is to talk to your advisors about any significant dietary changes. I cannot advise you I am just trying to draw attention to observations of others in case of interest.

I hope whatever pathway you choose with your advisors after your deliberations helps you to health.

RB

[julierene]

R.B. can you give us an EASY recipie for balancing the oils. It's a nightmare to me... Do you have any daily menu ideas? Cause I can read it all and think I am doing well, then realize I don't get it when it comes down to reading the labels. Thanks!

[R.B.]

Julierene,

I will try and come back later in the week with some links thoughts etc.

One of the reasons why many are getting high level of omega six is that the high omega six vegetable oils are used in most processed food etc. Also the labels mostly do not give quantities only a ranking order of ingredients.

Dependent on how important one views the omega three six issue it can mean generally avoiding processed foods, or at least checking labels. There are not many things that do not use vegetable oils.

RB

[Val Pfeiffer]

Carol--
I don't have advice to offer, but my thoughts are with you. Good luck with your move!

Val