Help its spread to my Brain

[Carol H]

I am moving to the Republic of Ireland(live in scotland at present) as Tykerb is now available in Ireland and my husband is originally from there and I want my two young children to be settled over there with family, school etc before I start to deteriorate and we have sold the house etc and move next thursday(7th December) - however 0 yesterday got the rsults of my CR scan and it appears there is a spread to my lower left side of the brain - I posted a thread a few weeks ago about dizzieness and feeling unbalanced - this explains it all and am not driving anymore as my spacial awareness is terrible now - I am getting an MRI on Tuesday next week to get a clearer picture and the neurosurgeon will determine if surgery is an option and if not - Radiotherapy has been recommened with steroids also - I will be getting treatment in Ireland and it will be interesting to see what their opinion on it compared to my scottish consultant - can anyone give me advice on how to deal with this as I am scared but not letting on to my husband as he thinks I am coping very well but I am terrified of dying before I get the kids settled in their new school and get my new house sorted as I am staying with family in Ireland until our new house is ready to live in.

I was diagnosed 6 yrs ago had a radical mastectomy, 6 months chemo, radiotherapy, ovaries removed then cancer returned in 2003 and had more chemo, then cancer spread to my bones and now for last 3 years get Herceptin every week but just changed to 3 weekly and also 3 weekly infusions of Pammidronate.

Any advice or thoughts on how to treat this so I can be fully armed when I meet the consultant in Ireland would be of great help.

[Joe]

Carolm
There are many on this board who have survived brain mets. Please go to our Brain Metsathesis page: http://www.her2support.org/a/newher2_002.htm
for tons of information.

Please read the paper which we published last June for the ASCO meetings. Click on the box on the lower right hand side of the page. I would suggest printing the page and give a copy to your oncologist.

Actually, Gamma Knife is the preferred treatment, followed by whole brain radiation..surgery is only used as a last resort if the tumor is too large.

Warmest Regards
Joe

[Heart Sutra]

Carol,
We don't know enough to give you any advice, I'm sure there are many here who can.
We wanted to wish you good things, and our thoughts are with you right now.

[heblaj01]

Carol,
Follow the indications given above by Joe for your main concern, the brain mets.
Regarding bone mets, if Pamidronate stops helping you, do not forget that Zometa is likely to be still effective (& perhaps more effective) as demonstrated in this study:
http://www.ncbi.nlm.nih.gov/entrez/...l=pubmed_docsum

If you do switch to Zometa at some time in the future, I suggest you request the infusion time to be extended from 15 to 30 minutes to reduce further the small risk of kidney problems which are slightly more frequent when Zometa is given after Pamidronate

[pattyz]

Dearest Carol,

I have been living with brain mets for over four years. Was first dx'd with bc nearly 7 yrs ago. Also Stage IIIb.

In Sept. '02 Mri showed two brain mets. Six months later another 14. Eighteen months ago, 8 more.

I have been lucky enough to deal with these without whole brain radiation. Five focalized treatments were done over the course of a year and a half to treat 16 lesions. I had three SRS- similar to Gamma Knife. Two CyberKnife treatments.

My current 8 brain mets have been 'managed' with the chemo combo of Xeloda/Temodar now for 15mos. Will find out today what the latest Mri looks like...

Just wanted you to know: you are not alone. Brain mets does NOT mean an immediate death sentence. If fact, other progressing mets are the usual cause of death even when one does have brain mets. This is what I have learned in these past four+ years.

I truly hope this gives you some Hope, too.
Warmest wishes,
pattyz

[Carol H]

Thank you so much for your reply - it gave me such a lift as the last two days have been a nightmare and to hear your story just made me realise that this latest obstacle for me is worth fighting and maybe in Ireland I will have better treatment options but am so worrie about the wait - my MRI is next Tuesday(5th) then the next\ day I am in gettig my Herceptin/Pammidronate then the next day I go to Ireland with my husband and children = I am not scheduled to meet with my consultant Professor John Crown, St Vincents, Dublin until monday 18th Dec as he is in the states the week before so am worried that if this is left for another 3 weeks untreated it will spread and be untreatable but I know once I start treatment hopefully I will respond as well as you have.

Tricia whom I met via this site has been an absolute godsend and angel - this website brought us together and if it wasn't for her encouragement and vital information on treatment in Ireland I don't think we would have moved and my two children are so very exvcited about going to live near their cousins and aunts and uncles and don't seem to be at all phased by starting at their new school(however they will be sharing classes with their cousins which helps).

I will be shutting down my internet account here in scotland tomorrow and my sister in law in ireland has access to the internet but not on broadband so will not be accessing this site as much as I usually do so any help or advice would be most gratefully appreciated before I go and hopefully I can update all of you members as mjuch as I can on how I am settling in ireland and how my treatment is going but I will be in constant contact with Tricia who will post threads on my treatemnt for me.

I stumbled across this website a few months ago by sheer accident - I typed in HER2 and just pressed enter and the rest is history - without this website I truly and utterly don't know how I would have coped in the last year - thank you all so much and Christine and other founder members you are life savers.

Take care all of you and hope to be back online soon.Have a wonderfull Xmas and New Year with all of your families.

[tricia keegan]

Carol
You are stonger than you think and will I'm certain get through this new bump in the road.
Good luck with the move and getting settled and know we,your her2 sisters are thinking of you and right there with you in spirit.
This site is full of strong brave ladies and you're right up there with them so get the boxing gloves on and believe as I do you're gonna win this one too!!
Hugs
Tricia

[Lolly]

Carol, I just wanted you to know I'm sending you best wishes from Oregon as you make your move. It will surely be so much better for you and your family to be near the rest of the clan as you start this battle, and I'll be looking for your post after you're settled in. Take good care.

<3 Lolly

[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