Worst News Ever!!!!

[Lyn]

Well gang, it looks like my days are numbered, I have spent the last week in hospital to find out today that my neck tumour has infiltrated my spinal chord and is burrowing into it and I could be a quadruplegic at any time, how do you like that for a statement, and that was how I was told, for every one else in the ward to hear as well, and they took it as badly as I did, she was like a puffed up chook when I said well, you won’t be doing any surgery and she no, then I said well I am going home, she spluttered at that and started going on about their oncologist and radiation oncologist, and I said thanks but I already have my own. Weird while I was waiting to be picked up this gentleman came and introduced himself to me as being with her when she told me and as it turns out he has apparently heard of me and had read my notes that Boris had, and he is head of the radiation oncology at that large Brisbane hospital and has offered his services to help in any way he can and he will be at my hospital on Wednesday to speak with Boris,, I have to wait for the CD of my MRI to come in the mail so I can give them a look. The surgeons rang Boris and I am seeing him on Tuesday, and this new gentleman seemed a bit surprised that I would be seeing him so soon, and that I knew the other Radiation oncologist at the large private hospital, hey I have been around a long time and Boris was only 32 when he first started treating me, so I have been teaching him, so I need to stick around, but fully in tact, but as he says I am dammed if I don’t have radiation, I know this and said I know, so hopefully, fingers crossed this area hasn’t already been done, I know I have had about 100 doses already but I know from my laser hair cut I haven’t in that area, so all we can do is hope and pray that that the radiation doesn’t severe the spine anyway, so dammed if I do and dammed if I don’t, so it is a wait and see game and as long as I can still use my arms and fingers I will post. I was well composed while she was speaking to me and that seemed to knock her off her perch, not that I am shooting the messenger, but she could have told me sooner as we have a 4 day break now for Easter so time is obviously important, so the lesson here is, don’t under any circumstances be allowed to be talked into letting cancer grow so the chemo can kill it, mine has been growing since I stopped the Eostrogen blocker in September so it has been on the march now for 7 months already, hopefully the Herceptin has been slowing it down, but tumours are growing, the one on my lower spine they weren’t to worried about. So I am off to do some research, I didn’t come this far to let the team down.



Love & Hugs Lyn

[Maryanne]

Lyn,

Please Know We Will All Be Praying For You!!!

Maryanne

[DeborahNC]

((((Lyn))))

[Cathya]

Lyn;

Can we help you research? What would you like us to do.....there is an army here at your disposal.

Cathy

[AlaskaAngel]

Lyn, I hope that you and the team you work with can grab hold of it and slow things down. It just seems so impossible that so much new information is coming out that you wouldn't find the right piece for your puzzle. I read your posts and appreciate your efforts to really communicate your situation. I wish I had a better brain and understanding of all the info out there to be able to suggest possibilities.

Sincerely,

AlaskaAngel

[TriciaK]

Lyn, Count on my prayers as well. If anyone can lick this you can. We love you and look up to your courage. Hugs, Tricia

[Lisa]

Lyn,

Perhaps this new guy is your angel. I will pray that whoever IS your angel will guide you through this.

Love and light,

Lisa

[mom22girlz]

Hugs, prayers, thoughts.....
susan

[tammymarie1971]

Lyn...You sound way too strong to let this bring you down!!!!! If you want people to research I would love to help...I love research and will gladly search things out for you!!I know it can be a very daunting process for one person.
So I guess the boxing gloves are getting laced up and ready for another match!!!!!
Tammy

[Lolly]

Well Lyn, your situation is serious, no doubt about it, but I KNOW your spirit is strong enough to handle it. Boris is not about to let you go without a fight, and it sounds like he has an ally with the gentleman you met so fortuitously.

Let us know what direction you're headed in research wise, we are standing by.

Love and Hugs,
Lolly

[Barbara H.]

Lyn,
I hate this news. I'm leaving in 2 min. to see my parents in Florida. It is Spring Break here. Boston Marathon and Patriots Day on Monday! You will be in my thoughts and I am hoping for better news. You are such a model and inspiration.
Thinking of you.
Barbara H.

[Cynthia]

Lyn,

When one of us suffers, we all do. We truly are all in this together. Please know that prayers are being said for you all over the world.

Cynthia

[MCS]

I will pary for you tonight

MCS ( maria)

[tricia keegan]

I am fairly new here but have read your posts recently with nothing but admiration for your courage and humour at such a painful and difficult time.Lyn I also will be praying for a good outcome for you and that someone will give you an extra boost of courage and humour to get you through this.God Bless you.
Tricia

[michele u]

Lyn, wasn't there talk about something new they are doing with herceptin in the spinal column? I thought i read this in a earlier post. If someone reads this that has heard about it respond

[Montana]

Lyn, I'm sorry to read your news. I'll be thinking good thoughts and sending them your way.

[Cathya]

Lyn;

Michele is right. I remember Lyn posting about this and here is what she posted:

Herceptin is now being tried intrathecally (injected into the brain via the CSF)
I posted this to the wrong forum--there is no clinical trial--yet.
Herceptin is now being tried intrathecally (injected into the brain via the CSF)
--CSF is the cerebral spinal fluid that bathes the brain and circulates around the parts of the brain and spinal cord

--carcinomatosis just means "widespread cancer"

leptomeningeal or meningeal involvement is different than parenchymal involvement as I explained in an earlier post (parenchymal means within the tissue of the brain itself rather than on its outside linings/covers)

Here is the abstract:

Oncol Rep. 2006 May;15(5):1373-7. Links

Application of intrathecal trastuzumab (Herceptintrade mark) for treatment of meningeal carcinomatosis in HER2-overexpressing metastatic breast cancer.

Stemmler HJ, Schmitt M, Harbeck N, Willems A, Bernhard H, Lassig D, Schoenberg S, Heinemann V.

Department of Internal Medicine III, University of Munich - Klinikum Grosshadern, D-81377 Munich, Germany. joachim.stemmler@med.uni-muenchen.de.

Leptomeningeal carcinomatosis represents a rare manifestation of metastatic breast cancer (MBC). A 39-year-old female presenting with HER2-overexpressing MBC and suffering from meningeal carcinomatosis was treated with the humanized antibody trastuzumab directed to HER2 by intrathecal administration. The patient was diagnosed with HER2-overexpressing stage III breast cancer in December 2003. In August 2004, the patient developed a singular intracerebral metastasis which was resected by neurosurgery followed by whole-brain radiotherapy. Since MRI and cerebrospinal fluid (CSF) analyses indicated meningeal carcinomatosis, the patient was commenced on trastuzumab (6 mg/kg q3w) and capecitabine (2.500 mg/m(2) d1-14, q3w). Prompted by clinical deterioration, 5 repeated doses of intrathecal methotrexate (15 mg/dose) were administered, yet without clinical improvement. There is initial evidence that trastuzumab does not reach an adequate concentration in CSF after intravenous application. Nevertheless, infiltration of trastuzumab into CSF is facilitated under conditions of an impaired blood-brain barrier, as it is known for meningeal carcinomatosis. For patients with leptomeningeal disease, intrathecal application of trastuzumab may provide an interesting therapeutical approach for patients with HER2 overexpressing metastatic breast cancer. Therefore, an Ommaya reservoir for intrathecal treatment with trastuzumab was placed surgically and intrathecal therapy was begun with escalating doses of trastuzumab (5-20 mg), which proved to be effective and well tolerated by the patient. Within 2 weeks after treatment, the patients' condition improved significantly and cell counts in CSF obtained from the Ommaya reservoir remained low for 11 months after first diagnosis of meningeal carcinomatosis when clinical symptoms and MRI indicated progression of meningeal and cerebral disease.

PMID: 16596213 [PubMed - in process]

[Sherryg683]

Lynn, you are in my prayers. I am so sorry to hear about your news. I think your point about letting the cancer grow to be wiped out by chemo was well made. That is why I don't believe in waiting till you have symptoms, it may be out of hand by then..sherryg683

[Lolly]

CancerGuide: Clinical Trials and Experimental Treatments


http://www.cancerguide.org/offprotocol.html (http://www.cancerguide.org/offprotocol.html)



Formal Compassionate Use Programs
A formal compassionate use program is a mechanism for getting an unapproved but promising new treatment to patients who would otherwise be unable to receive it. Compassionate use programs are for people who have a life threatening with "no comparable or satisfactory alternative drug or other therapy available to treat that stage of the disease in the intended patient population" (in the words of the FDA regulations).

Formal compassionate use is a bit like a clinical trial in that you will still have to meet specific requirements such as the type and stage of disease, and usually you must be treated by doctors who participated in the clinical trials for the drug, but compared to trials, the requirements are somewhat relaxed. If you qualify for an open clinical trial of the treatment, obtaining it through compassionate use is not an option.

According to the FDA regulations, compassionate use programs are normally for drugs which are in phase III or have completed accrual to their trials (it takes significant time to allow the data to mature, compile it, and get it reviewed by FDA - often several years), but the regulations do say compassionate use might be possible for some drugs which are only in phase II testing. I presume there would still have to be applicable promising results - such as spectacular results from an ongoing phase II trial. You won't find compassionate use programs for drugs which are in the very early stages of testing. If you just heard about the latest cancer cure for mice on the nightly news, you can be sure there will not be a compassionate use program. There have to be results in people with your type of cancer.

Although the FDA has to approve compassionate use programs, they normally do so without fuss. Whether there is a compassionate use program largely depends on whether the drug company has decided to have one. The decision depends on many factors including the cost which can easily run into the millions and whether there is an adequate supply of the drug (which is often an issue). In the past, agitation by organized patients has sometimes made the difference. For instance, Genetech granted expanded access to the breast cancer drug, Herceptin, only after breast cancer activists conducted an intensive campaign. ("Demand Grows for Early Access to Promising Cancer Drugs",Journal of the National Cancer Institute, November 20, 2002)

Finding Compassionate Use Programs
If you're interested in a particular drug you can find out if there's a compassionate use program by contacting the company. The first step is to find their web site.

[Sheila]

Lyn
You have people all over the world sending warm thoughts and prayers your way that this is another hurdle you will sail over....you have had so many...and that is what makes you such an inspiration to us all....take the lead once again!

[jhandley]

Hi Lyn

Sorry to hear your news. Thinking and praying for you. Hope you get some good advice and help. If you would like a visit let me know.

Jackie (Victoria)

[Julie2]

Lyn,

Please try to get Lapatinib. It should work for CNS mets.

Julie

[Lyn]

Thank you all so much, and yes I Doooooooo! need all the information you can get your hands on, and well all the love and prayers will get me, and us, through this next stage, I did say to my onc I wanted to be top dog, so I must be if this new Angel, knows me, especially since I hadn't met him before and he already knows me from Boris's File, and let's face it Boris is only 40 and he needs to learn a lot more about us and this dispicable, sounds like daffy duck, disease. Love to you all, it is a worry living with a time bomb, and that is what it is, we still have time. So I am faxing the info to Boris, that you lovely ladies have sent already.


Love & Hugs Lyn

[Lyn]

Hi, Lani, your server won't accept anything from me, but my email address is alexandere666@iprimus.com.au the problem with my address is the extra "e" on alexandere

[Cathya]

What about trying a loading dose of herceptin now while you are researching other ideas? Your her2 levels must be very high given everything.

Cathy

[sherri]

Dear Lyn,

We admire and salute your strong will. You are and will be in my thoughts and prayers until I get the good news from you,

Love and hug,

[Sue2001]

Dear Lyn,

Please know that I am thinking of you, sending you warm healing thoughts, and including you in my prayers. I am fairly new to this site but I have enjoyed reading your posts. Keep us posted on how you are doing and what you and your doctors decide is the best course of action. Please take care of yourself and I wish you the very best. Hugs, Sue

[Lyn]

And of course, Lolly and Cathy, what can I say? I will ring Boris and make sure he gets my faxes, dn't you love modern technology. I just had the shock of my life, my left foot went numb while I was sittting here but it was circulation, I have to use them or loose them.

Love & Hugs Lyn

[Lolly]

Lyn, links to some info that may give you some ideas:

Clinical Trials on Spinal Tumors:
http://clinicaltrials.gov/search/term=Brain%20and%20Spinal%20Tumors


CyberKnife Spinal Radiosurgery:
http://www.cksociety.org/PatientInfo/MedicalConditions/spinal_radiosurgery.asp


NINDS Brain and Spinal Tumors Information Page
http://www.ninds.nih.gov/disorders/brainandspinaltumors/brainandspinaltumors.htm

[chrislmelb]

Lyn i'll be thinking of you up in QLD. Thank goodness you seem to have some pull up there. Lots of positive thoughts your way.

Christine

[StephN]

Wanted to get back to you - just swamped with all kinds of new things including getting a new bed today.
This news makes me a little sad as you have gone to such lengths to joust with this beast. Not that the match is by a far cry over - just that the horse is letting you down a little right now.
We leave for my hometown tomorrow or I would try to come up with a little something in the way of possiblities, but nothing off the top of my poor overworked head that has not already been said by the other rough and ready crew here.
You have all my best thoughts and prayers that the new chap will be able to help you out.

[Roz]

Lyn, So sorry to hear your news.

There are trials of Lapanitib in Sydney, thru Mater Misrecordia Hospital in Crows Nest, or North Sydney (not totally sure of the address). I'm sure your onc will know

[Lyn]

Thanks Roz and Chris my Aussie sisters, and thanks to all of you around the world for the prayers and support, yes I will beat this again, on TV they showed a lady 104, yes 104 doing volanteer work at one of the hospitals, and she looked and acted about 70 years old, I would like that to be me.

Love Hugs Lyn

[emmasmom]

Lyn, please know you are in my thoughts and prayers.Love, Lisa

[karenann]

Lyn,

Keep the strength and believe! I know you will beat this.

Love and hugs,

Karen

[helenh]

Lyn,

You are constantly in my thoughts and prayers, please keep strong and positive. I pray also for your doctors and specialists to find the guidance they will need to steer you through.

Love and Hugs back

Helen

[sassy]

Lyn,


Keeping you in my prayers.

Sassy
________
Nexium attorney (http://www.classactionsettlements.org/lawsuit/nexium/)

[Sandy H]

Lyn, you are a pro and so put your armour on and get started. On second thought I don't think you ever too it off. The fellow that came to your rescue is your angel. He will get the ball rowing for you. We are all here to support you as you have supported us in the past and will continue to do so. I will ask my Christian friends to pray for you along with Al and Linda. God does answer prayers maybe, not the way we want but he does answer. Take advantage of the offer here for help with the research-you need to save your energy to heal. Be sure to keep us posted. Sending you a big hug, Sandy

[Lyn]

Thank you all very much, and I have found out a bit of information that my reflexes a low or not there, is a good sign and also if bladder not working that is a problem and I don't have a problem at the moment when I go it is like I have had a fluid tablet, when measured at thd hospital the capacity that didn't come out was onlu 15mls and nothing to worry about as it was so small. So it looks like the magic on this site is working. My low blood pressure is strange so maybe it isn't pumping this disease, but I did get extra tumours in the neck whicb are burrowing into the spinal cord in between MRI's first last Friday and the other Monday or Tuesday I can't remember, as one on the lower spine which they weren 't worried about. Very daunting but at the same time the other is encouraging.

Love & hugs to you all.

[snoopy]

Thinking of you and your family Lyn.

[Sandy H]

Lyn you continue to be such a trooper. There is a reason this gentleman came to you and its another angel sent from above. Now, something will come from this and you will be going up hill again. We are praying for you and please keep us posted. Try to enjoy Easter with your family if this is what you do in your country?? Good luck next week. Sending you a big hug, Sandy

[Lyn]

Thanks everyone, I just found out today that the Gentleman is actually a Professor in Radiation Oncology, so one of the best angels yet, I feel good and the worse pain I am getting is in my knee and shin which I am positive I fractured when I fell, but do you think I can get anyone to take me seriously, and the nerve doc, I told her to be careful with her reflex hammer, so what did she do wack both knees where they were sore, she was lucky her face wasn't in the way and my reflexes were slow which is apparently a good thing. The other thing is, friends and relative are being reallllly nice and visiting me, I tell them that the game isn't over, the goal post have been moved further away and the pole lifted and that I am not in denial, us HERs are unknown and no one knows which way we are headed because the herceptin mutates out cancer and we are unpredictable and that I am not finished my work teaching the oncs and I want to be around until at least the age of my mother, 86 with the energy of a 20 year old. So I will know more tomorrow and I will let keep you all informed, and my organs are all functioning well considering all the drugs I am on.

Love, Hugs & many thanks for all the help and info

[Lolly]

Lyn, that's very good news! And very glad to hear that the relatives are being so nice, after the Cruise from H*#&!!

<3 Lolly

[Lyn]

Well what a shocker onc appointment I had, I female called out Lyn, I said that would be me, then she intorduce her self as, whatever I wasssn't listening to her name, it was "Pallitave Doctor", Cat on a hot tin roof for me, words I never want to hear, So when I could shut my mouth, I said so what is happening, the doc I was supposed to see was somewhere else, my own on holidays, I said what do you mean nothing, well there isn' a solution, the chemo is of no use to my spine, like I didn't already know that, I said what about radiation, she said that might be dangerousl Deeer, what option, either my LOOTO balls drop or they don'tn HER 3+ are an unknown quantity, the things I get are just about always rare, then she started to tell me what damage the radiation had already done, well we got into an argument about that, do you think she would listen, I even had to say will you let me finish, I had to try and get her to understand that this had been coming on since 2003 when I had my neck X-Rayed had that was when they said there was nothing except my Thyroid was enlarged the the whole heart saga, and that they couldn't biopsy the skin because it was to tough, then I asked if she could write out prescriptions, so I got some of the drugs I needed, then I asked her if she knew what cancer looked like, that hit a nerve and she told she had been an oncologist for 30 years, and then she wanted to look at my MRI, well I only had the second last one, so she took it out of the packet and held it up to the light and put it back in the packet, very impressive, bottom line I am seeing 2 oncs at 10 today and the MRI on disc is supposed to be ther when I get there, I have to go now but I will fill you all in as soon as I know. haven' got tmie to correct my spelling.

LOv & Hugs Lyn

[Lani]

Not only is there conventional radiation therapy, but cyberknife/gammaknife, but also surgery. All have good track records IN PREVENTING PROGRESSION OF NEUROLOGIC TROUBLES (AS WELL AS REGAINING SOME NEUROLOGIC FUNCTION WHEN TREATMENT IS NOT OVERLY DELAYED)

Show them the articles posted if they are stubborn and tell them if they are oncologists or radiation therapists "WORTH THEIR SALT" they should seek out outside opinions if necessary, get together and discuss your case as a team and present you with a game plan.

Many oncologists think that palliation is all you can do for any Stage IVs "since they cannot be cured" TEACH THEM SOMETHING!

LANI

[Maggie]

Lyn, prayers for you and your family!

Maggie

[MCS]

Lyn,


We are all with you

XO

MCS (maria)

[Lyn]

Well apart from me being down, I couldn't get my broadband to fire up so manually dially up at the moment. I have been feeling the worst I have ever felt in my life,They say Hysteria is a sign of Brain mets, well that is the only symptom I have had for that, but how fast it is growing I have no idea, I had sort of a win win day, I was running late to see the radiation onc and phoned the hospital and the secretary was to pass it on, then I got a call 20 minutes later telling me where I was supposed to be, she said didn't matter the radiation onc had left, I thought great, but she said no stay home he had taken my MRI disc back to his hospital for planning and I am having that on Thursday, so for him to have left his his clinic at 10am he must have shut it down early, at least I have 2 radiation oncs in my corner, and my chemo is to stop until I have finished radiation, is this to save money or my health, the Gemzar/taxol/Herceptin seems to have worked for my underarm with the Aromasin of course and until I have another punch biopsy on my remaining breast I won't really know. I have a question, would thin blood to the C be worse or better for feeding it. I am a little confused on how anti-inflammatories work on some things. I tell you all, this is the scariest situation I have been in a long time, and it doesn't help looking like the hunch back from Notradam on Steroids, some morning I have got up feeling fine so that is when I put on my make up and do my hair and look just like Cabbage Patch Lyn, but other days it is a worry.

Love & Hugs to you all.

[Lani]

Think I missed something--no evidence that blood thinning itself is bad for C as cancer patients are more prone to blood clots in the leg and must stay on blood thinners for years once that happens (not been found to worsen their cancer) and, in fact, as I alluded to in the other post, in some cancers it increases the effect of radiation therapy. Ask your radiation therapist if he wants you to continue it and if not, when you can resume it. Best of luck!

[Lyn]

I must be failing, I have obviously misinterpreted your post, having another scare, I am slurring my words, and found it hard to swallow and eat lunch, I hope I am just tired, but my luck doesn't run that way, I always get 2 solutions, and it is always the wrong one, so if I am unable to post I will try and get my daughter to let you know.

Love & Hugs Lyn

[karenann]

Lyn,

Are you feeling better today? You are in my thoughts and prayers.

Karen

[Barbara H.]

Thinking of you, Lyn.
Barbara H.

[hutchibk]

Hi Lyn - I am new here and I am honored to be speaking to a living legend! My heart and prayers go out to you.

I don't know if it helps at all, but I would like to share a story with you that might help put your mind at ease re:radiation around the spinal cord/spinal column area.

9 years ago my cat, Pizza Pie, was diagnosed with an osteocarcoma in her spinal column, pressing on her spinal cord. We had it surgically removed at a specialty veterinary center in Houston, and then she was put in the care of an oncologist at the same center. He was a wonderful man. He used to be a 'people oncologist' at MD Anderson, and worked in research there. One of his specific areas of expertise was radiation along the spine, which was generally considered a no-no since it was believed that it would do too much damage/disintegrate the spinal cord & column. He did alot of his research on pets whose owners were willing to try anything to save their lives. (That's how he fell in love with veterinary oncology, working with the pets). It turned out that the spine could handle radiation in many/most cases with very little compromise, if any. Pizza had 24 radiation treatments along her spinal column, which was already compromised due to the hole created in surgery to remove the tumor from inside the column. Her spine tolerated it extremely well and she had no issues at all from the radiation. Between the radiation and the chemo (she had adria for 5 treatments) we extended her life for 5 years. She was a living legend, too - what a feisty little girls she was. She is one of my inspirations!

[Sue2001]

Lyn,

I am thinking of you and including you in my prayers each day. Please keep us posted.

Love, Sue

[Lyn]

Thank you so much for your kind words and for sharing about the radiation, it made me feel a lot better, I saw the radiation oncologist today and it made a nice change for him not to be overly concerned, he just said I have your MRI and his girls put me through their new CT scanner, I am scheduled to start 10doses from next Friday night at 8.30, we have yet another holiday on Monday, at least he didn't mention that word, I don't even want to repeat, the Qua choke, word that is. He was more concerned about the other lump that the surgeon was not PARTICULARLY WORRIED ABOUT, land just dismissed, like me he is concerned about anything that shouldn't be there. I stopped my steroid today I think my body has been saturataed with it and I am now alergic, just 1/2 tablet made my face blow up like a watermelon even red on the cheek and it was not interacting with the other drugs very well at all. I am also getting the hydrocortisone injection in my collapsed shoulder next Thursday, so I may get a bit more use out of that one, I had my eating binge yesterday but started to get back on track today, I even took my Oxygen water, it tastes like pool chlorine, but C doesn't like odygen or alkaline, that is why I had the lemon on my pancakes yesterday, lemon is alkaline of all things. So I have had my week long pity party and now time to get cured, AGAIIIIIIIN, if not atat least NED so I can catch my breath.

Love & Hugs Lyn

[tousled1]

Hi Lyn,


I only know you by your wonderful posts on tiis board. I know the last thing you want to hear right now is how strong you are. What you need right is some loving comfort which I am sure you are getting from your family. Being strong in fighting this beast is a very hard thing to do. We all try to be strong but I must admit that sometimes I just want to sit down and have a good cry or have someone give me a big hug and not say anything about how strong I am but just be there for me and listen. I Just wanted to let you know that you are in my thoughts and prayers.

[RobinP]

LYnn so sorry to hear of your news. What about Laptinib, doesn't it cross the CNS- spinal cord? Perhaps GSK would consider this a compassionate use for you at this time. Many prayers, RobinP

[Lyn]

Thank you all again, I was told by my onc that I have to do the rads before anymore chemo. I have sent him all the info on Laptinab and I start rads this Friday night at 8.30pm, for 10 sessions, so hopefully I will get a quick result, I know I can't stand being an invalid I don't want to be one either. So I am in there trying to dig myself out of this hole. Thanks again for all the support, love and prayers.

Love & Hugs Lyn

[Cathya]

Lyn;

I was so happy to see your post. You truly are an inspiration to me and I have been wondering how you are doing. I hope you get the lapitinab. Please keep us informed of your progress as you battle this beast once again!!! We're all cheering for you.

Cathy

[heblaj01]

Lyn,
don't loose hope. I think your current care givers are still treating you.
In addition you may, if need be, try to get on a compassionate basis the Herceptin direct CNS injection tried in Germany & mentioned in a post by Cathya.
There is also a phase I/II clinical trial of a patient specific vaccine going on
(http://www.antigenics.com/news/2005/1121.phtml).
Also worth looking into is the non specific vaccine for brain tumors expressing EGFRvIII tried at the University of Texas M. D. Anderson cancer center by Amy Heimberger, M.D.(http://www.sciencedaily.com/releases/2006/04/060426075705.htm)
Finally I would suggest contacting Dr Judah Folkman (who is said to be easily accessible) at Harvard University Hospital for advice on novel treatment options.
He is the originator of the field of research in antiangiogenesis & leads a large research laboratory.

[Lyn]

Hi all, yes I am feeling better today, I had my hydrocortisone needle in my wrecked shoulder yesterday, but not as good a result, I think it had something to do with the radiologist who yanked on it when I was having my knee X-rayed, then to top it off, on the way out yesterday I had another sudden drop on the step and of all things Ron had his left arm full and me he was holding on my bad shoulder and next thing I know I am being strung up by that arm, the Dr who did it, I call a "Hit & Run" once the needle was in he was off, whereas the one before made sure the stufff had circulated and checked my range of movement, and if that wasn't enough while I was getting dressed I though I my as well go to the loo, and sure enough I couldn't get up from the loo and ended up on the floor, again, knickers around my ankles no top on, I managed to hit one of the call buttons, I could only just reach it and turns out it was the call everyone alarm, and the one I needed was down real low, who would have thought, I turned out OK, a nurse came in and got me decent and a young man had to help me up, they were very gentle, and of course the good old jeans were used as a handle. So at the moment I think I must be getting over the pains of everything, so I am adding the Liquid Ordine (morphine) as a back stop. I am to start my Radiation tonight, 1 of 10 and tomorrow Saturday I am having an Echo done so fingers crossed my heart is better than last time, it is just so frustrating that I can't just get in my car and do what I want to do, when I want to. The house work is showing as being a bit of a strain on the family, now I think they realise what I used to do which was a lot. So I post when I can, and I am back on 1 steroid a day otherwise I just can't even get out of bed, I love my sleep but I hate having to get up for the loo, the steroid makes it worse, but at least everying is still working. I have also faxed a letter to the Hospital who was looking at putting me on the Trial, it was at the same time my neck was marching but we didn't know, so hopefully it is the Lapatinib, it said that this hospital was in a trial, I also thing that by having the steroid it makes me weepy and I haven't found the burst of energy yet. Will keep you all informed of my progress, a bit sad when I am laying down I can't even be bothered looking at my watch for the time, everything is an effort at the moment.

Love & Hugs and thanks everyone

Lyn

[lu ann]

Dear Lyn,

I know why you have beaten the odds. You don't hold anything in. You let it all out in your writings and you allow us to read it. You have made us laugh and you have made us cry. Thankyou for sharing your journey with us. I pray to God that you will start feeling better.

Love and Blessings
Lu Ann

[sherri]

Yes I think it's true for everybody: Lyn you have made us laugh and you ave made us cry. You are a Superwoman! I hope you get well soon.

Big hug,

[Val Pfeiffer]

hi Lyn--
Sorry it has taken me so long to post. I just started a new job. After my BC situation, I decided that I wanted to go back into the health care field, so now I am managing product development for a managed care company that is owned my a non-profit. Hopefully I can make a difference.

Anyway, I have been thinking about you a lot since I read this thread yesterday, and I can't think of anything else that hasn't been suggested, except one thing....do you have your case history summarized on this board anywhere? Or in a format that can be emailed? If so, it would be my pleasure to send it to my docs and ask for their opinions--I am friends with several of them and I think they would do that for me. It sounds like you are in good hands, but you never know when someone will lookat a situation a bit differently and offer a new suggestion. No promises of course, but let me know.

And please hang in there--many people are thinking about you and cheering you on. I love your posts, because no matter how crappy things are for you, there's always a bit of humor injected in your words. In my opinion, that by itself serves as a pretty great guardian angel, not only for you, but also for the rest of us. Thanks.

XXOO
Val