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Leigh\'s Update

10 years 3 months ago #31100 by mmc
Leigh,

It took me a couple of attempts to read your message all the way through.

You have been an inspiration to me over the past few years and your posts have helped me tremendously.

It's difficult to respond for a couple of reasons for me. First, my throat keeps clenching up and my eyes are watery and my chest is tight. Second, no words can truly convey my feelings about your current situation.

While we've only met here in this forum, it is hard to hear about a friend in trouble and be helpless to do anything about it.

If any of the clinical trials that Cynthia posted look promising, I hope you will give it a try.

It's so humbling when something like this happens and we can't do something to fix it or somehow make it better.

You and your partner are in my thoughts and I wish you the best.


Mike

Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results....distant mets
2/2014 ct result...spread to liver, kidneys, and lymph...

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10 years 3 months ago #31087 by DougG
Prayers and best wishes are with you, Leigh. You are truly inspiring.

Anita
Forum Moderator
Caregiver

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10 years 3 months ago #31086 by Rhea
I am so sorry to hear of your plight. It sounds like you have struggled through this cancer and have done all you can to fight it. Second opinions are always recommended. Maybe your doctor might find someone he connects with to see what else they can do. I say fight until the end. I wish you well, Rhea

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10 years 3 months ago - 10 years 3 months ago #31070 by Cynthia
Leigh,

When you are trying to find word when you know there are none that can convey what you are feeling it is so hard, all I really want to do is to give you a big hug. Your grace under fire is truly humbling and awe-inspiring. Know that we are here for you and that you are in my heart and mind.

I know this is probably of little help but here are some clinical trials I was able to find, some are even in Europe. If any of are of interest have your doctors call they will sometimes share protocol for non trial usage. If you let me know what areas you need researched I will take care of it for you. I have done some general research and am finding very little that is specific to your situation.

I don’t know if I ever told you but I lived for years in Europe. During that time I fell I love with Holland and often say if I were not American I would be Dutch. There is no place I have ever been as fine as Holland in spring I hope you get a chance to enjoy it a bit.

Again let me know what areas to research and I will take care of it for you.

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=587517&version=HealthProfessional&protocolsearchid=7500787

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=589296&version=HealthProfessional&protocolsearchid=7500808

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=586064&version=HealthProfessional&protocolsearchid=7500808

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=640483&version=HealthProfessional&protocolsearchid=7500808

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=601946&version=HealthProfessional&protocolsearchid=7500808

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=592782&version=HealthProfessional&protocolsearchid=7500808

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=641052&version=HealthProfessional&protocolsearchid=7500891

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=593610&version=HealthProfessional&protocolsearchid=7500891

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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10 years 3 months ago #31068 by rabyrd
Oh Leigh, I am sitting here reading and re-reading your news trying to put thoughts into words. I can only imagine how difficult it was for you to hear this and share. please know that positive thoughts, virtual hugs and actual prayers are being offered on your behalf. You are such a warrior!

Love,

Rebecca

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10 years 3 months ago #31058 by Leigh
Hello Everyone,

I have been a stranger here for a few weeks because of illness..popping in and out of the hospital with various sickness and vomiting complaints.

A few days ago I had a lumbar puncture and the results came through Friday just gone. The news was not what anyone would want to hear but hey it is my deal of the deck and I have to deal with it . Hopefully with all your love and support along the way.

My Oncologist has confirmed that they found bladder cancer cells in my brain fluid in my spine that circulate into the brain and lumbar area. This is a very rare condition and effects 1% of people.

What can they do? Well my Oncologist in Belgium has no options for me because the three options they have unfortunately have given no positive results on extension of life.

Option one:
Chemo...no positive results as cannot enter protective membrane in brain.
Option 2:
Radiotherapy, I have already had in January to no effect.
Option:3
Inject chemo directly into spine....no positive results for patients whom have had that option.

If the next two weeks go fine I may have months if not then it could be weeks before I pass.

I am still full off energy and positivity and want to try for a second opinion just to give myself the feeling I have done all I can to fight this to the end. I am at times too weak to sit behind the computer and do much research at the moment myself so any help would be appreciated.

I know this will be a shock to many and nothing anyone can say can really help....I just have to find a place for it somehow myself.

Please do however keep your kind words of love and support coming I really appreciate them.

If you would like to be in touch, please send an email to this address This email address is being protected from spambots. You need JavaScript enabled to view it. because it will be far easier for my partner to print them out for me to read. If I do have the energy I will be back to check any posts when I can.

For now I send you all my love and best wishes.....

Leigh Walker
Graafjansdijk b, 141
4554LC Westdorpe
Zeeland Holland

This email address is being protected from spambots. You need JavaScript enabled to view it.

Leigh, 39
Dx July 2007
TURBT July 2007
RC/Neobladder ,Studer Pouch, September 2007
Erasmus Centrum Rotterdam
TNM Classification: pT4 N2 Mo
4 cycles aduvant chemo Gemzar & Cisplatinum

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