Reply to StephN

[Eccles]

The info you were looking for is hiding in PattyZ's posting on brain tumours way down the list in case you are looking for it. If I can figure out how to cut and paste it here I will. Eccles

[Eccles]

Steph, re brain tumour:

Yes, it was the first mets for me but, saying that, only a biopsy or an operation would have been able to confirm cell structure so there is a possibility that it (they) could be primaries. One major in cerebellum, one smaller in cerebrum. You ask about any treatment "besides an operation" - an operation was not considered feasible by the team. Did I decline options? - there was no option to decline but if I had been offered the possibility of surgery I believe I would have declined it because I would prefer to have the months of life rather than a possibility of being a veg. especially if the recuperation would have left me back at square one anyway. Hope that clarifies it for you. I will have to look up the URLs for the brain tumour sites but it would surprise me if, in your longer time dealing with your own situation, you have not already sourced them. Eccles

[pattyz]

Eccles, since first dx with the brain mets in Sept. '02, I too have looked for others with brain mets in many places. Found a number of very special gals who I became close to. All but one of them have passed on.......but they are saving a spot on their 'dance card' for when I show up.

A few other bc friends have subsequently been dx'd with brain mets...with the same outcome as above.

I have felt from the beginning of my dx that it was my place to give back any kind of personal experience that might be helpful to others.... and I continue to do so. Perhaps with less enthusiasm as I have fewer emails to reply to from my darling friends.

But, I know what it's like. So I want to put out any kind of info that just might help that one person. Without steppinng on or hurting any toes.

xoxopattyz

[StephN]

Dear Eccles -
Thanks for the clarification on your situation. So sorry that your mets (or new primaries?) were in bad position for treatment.
I guess my query was pointed at the possibility of the radiosurgeries that myself, PattyZ and others have been fortunate to undergo. But there must be circumstances where one is not able to have those treatments either. It is very expensive and my insurance paid.
My docs offered me the choice of open surgery or Gamma Knife, and I chose the latter feeling it less risky as the GK is accurate to 1mm.

Who knows how things will progress for me in the coming months and years, but for now I thank the Good Lord every day for the day I had, be it very good or not!

I promised my mother-in-law as her dying wish that I would "take care of her son" (my husband), and don't feel like letting her down just yet! Actually we take care of each other ... ;)

Will check for the link in Patty's post down the list. Have not gone looking for other sites concerning brain tumors as I feel at this point that my story will benefit others at this site, and I don't have too much time to spend each day on the boards.

Wishing you comfort and joy each day as you follow your path.

[Eccles]

Patty and StephN,

Thank you for replying so we are now connected.

Patty, I am so sorry to hear that you have lost so many friends so quickly. Am I surprised that I am still here, I ask myself. "Somewhat." is the answer. I believe that as long as there is something useful for me to learn about myself in order to be more useful to others, I will be hanging here. My GP who makes home visits (can you say that in the US these days?) pointed out to me something written about me by another doctor on the multi-disciplinary team. It said he thought that I might be around for quite some time because of my attitude.

Every day brings more of a sense of gently losing ties with this domain and building ties with the next one. I would not trade places with anyone. As you can gather I am doing just as well as anyone who has submitted to all the available treatments and I dare say I feel just as good or maybe even better. There was never a sense of being let down or short-changed due to circumstances. In fact it was a miracle that I was even in the UK when I was diagnosed because if not for my husband having pushed us to come here when we did, for reasons which have nothing to do with health concerns (I was in perfect health at that time - Aug 2002) I might well have been up the creek without a paddle living in a country where there is no national health service and not much to commend the facilities and treatments available.

Living in the UK instead of the US makes a big difference in what is available and how it is paid for. I am a UK citizen and most everything is already paid for and the rest I was able to apply for in terms of funding.; ie meds, treatments, diagnostics, etc. But as you have probably heard, having this kind of system means that some drugs (herceptin is in the spotlight these days) are not available to anyone unless (terms and conditions change)...blah blah blah.

I have emailed Joe a photo of me and hope he will be able to attach it here. All the best for a good day for each of you. It is 4am here so I will go back to bed for a while. Eccles

[Eccles]

Yes that is my photo up, thanks to Joe, but I have to admit that after seven months on Dexamethasone I am now unrecognizable and it was a very difficult journey coming from a size 8 to an 18/20. I cannot find myself in the mirror any more and I sympathize with women who want to carry around a photo of themselves prior to treatment just to show we did not always look like Mr. Potato Head. Eccles

[StephN]

Dear Eccles -
Your photo looks quite presentable and normal. This is how we shall know you. I also had a bad case of "full moon face" while on the Decadron earlier this year. It took months to go away after I got off the drug.

And as for being up at 4 am - that was normal as I would always get a big buzz fours hours after taking the last 4mg pill - 4 times a day. So the midnight pill was in full swing at 4 am. My mind would not stop for about an hour. Then it was almost time to take another pill. Hated that.

And my ability to focus or remember something I was reading was not good as I was also tired.

Glad you are content where you are and are able to get some quality health care.
Your great attitude will carry you a long way. Works for me. I do what I can to help my situation, but being alive is very meaningful and I try to smell my roses and watch the birds in my yard each day.

[pattyz]

Survivor guilt. It grew nearly every day in me for what seems like quite a while.... Now not so much with progression. So I 'get' what you say...

I can not comprehend being on the drug from hell for SEVEN months, Eccles! So debilitating on it's own. Bless your heart. I even saved something for myself 'just in case', but it probably does you no good what-so-ever.

"A Phase III Study of Human Corticotropin-Releasing Factor (hCRF) for Controlling Symptoms of Brain Edema in Patients with Brain Cancer who Need Dexamethasone"

I was not interested in the study as much as just getting the stuff ( XERECEPT™ ) so I searched for what I could find. Not enough info online, so must go to the pros in person on this one.

You know how the visual is imprinted and the first sticks fast. You are there (sz 8!) in your rocker having a cup, across from Steph and me....visiting and sometimes watching/listening to the birds outside :o)

xoxoxpatty

[Eccles]

StephN, sorry but you have read me wrong: this is the BEFORE photo. I dare not post the "after" one which looks like a hairy Mr. Potato Head. Eccles

[Eccles]

Patty,
You are right about it being a drug from hell. Sometime back I felt I could not take it any more and I heard of a consultant (Palliative care) who would talk to me about alternatives so I went to see him and in a very short interview he determined (without much help from me) that I was more interested in quality fo life rather than quantity. He said that he believed that the Dex had had very little beneficial effect on me since the first couple of weeks had passed. He suggested that I stop taking it. I started to wean off it the next day which was a Saturday and lo and behold I started getting extreme pain in the head. I tried to live with it, looking for my pain threshold, or perhaps for more obscure and dark reasons like the guilt you referred to in your post.

By Sunday night I had to give up and took the usual 4mg of Dex. The pain subsided immediately; incontrovertible evidence in my mind that the Dex had been, and still was working to keep the fluid buid-up at bay despite what the Consultant thought.

It took me three days to recover from the trauma of experiencing such severe pain. Three days!! I cried (cried like a child who has been maliciously hurt) whenever I THOUGHT about the pain, or when someone said anything to remind me. It was phenomenal. I had no control over these tearful reactions. The Consultant apologized for having suggested I take that risk. I do not blame him; I was compliant with his suggestion. I see now that there are situations worse than living with daily doses of Dex. If I want a bit more time I need to toughen up (which I feel I have done now). But I am clear that I am NOT able to endure that pain, and there was not enough pain relief to make it bearable. Eccles

[StephN]

No - Eccles(iastes?) - I got that this is a before photo. And this is the you that was YOU for most of your life, so that is how we will know you. Not the artificially puffed up caricature of the normal you.
Not that the description of the present you is not valid, but I don't think of that as the you that your genetic makeup created.

Do you remember Mary from Tierrasanta? She also was on this board until incapacitated beyond typing and sitting up by her spine met. She was constantly championing the idea that we need brain MRIs even if we don't have symptoms. This advice was why I went to my med onc and got on a screening schedule for brain mets. The third scan was the charm - found the mets without my showing ANY symptoms.

Keep up the conversation - what do you enjoy these days? Movies on the tube, books, visitors, getting out?

My back yard looks like the Cascade Mtn range in miniature. The moles have created huge mounds between 6 and 10 inches deep. They are full of little rocks from under the grass and garden as they tunnel. I take care of a couple of the piles each day so my hubby can mow the grass this weekend! Don't know why the little creatures decided to come to our house, but it looks like the whole clan moved in! One way for me to get in some sunshine and accomplish a little somthing ... ;)

[pattyz]

A tale from a worse nightmare! I have called the little beastie the 'drug from hell' as well as 'the drug I love to hate'........ but the sucker does it's intended job.

My appt with neuro and CyberKnife rad onc is tomorrow...to see what might still be possible for my latest lesions. But, I will also ask if they know of this other drug I posted about: XERECEPT™. It would be such a gift to find an alternative to decadron for us.

Steph and I both 'see you' size 8, dear. And that's that!

Do you have a pet?

xoxopatty