Worst News Ever!!!!

[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...0426075705.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.