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Leigh\'s Update

10 years 3 months ago - 10 years 3 months ago #31130 by Leigh
Metrotrexate seems to be a possibily that can be given orally, intravenously or injected directly into the spine. Seems to have a delaying effect on the cancer growth.

Seems that I am clutching at anything passing me by....but hey ....now I feel well enough and have energy to research a little. If I can get a few months or longer out of this with little side effects it really is worth it to me for the time with my family and friends.

I had my port placed in on Saturday and although it is still giving me a bit of gip when I move my arm or stretch it is ready and willling to go when needed.

I had it done under local injection and the procedure took just 30 mins....The initial pain of having the numbing injections under my left shoulder pain passes quickly and the procedure zoomed away.

Just had to have an xray after wards to check that no puncture had occured on the lung which I am sure I would have known about....but got the all clear. After a sandwich and cup of coffee I was sent home packing.

My home care is just to shower as normal and change the dressing each day for three days and then to air it out to the world.

I have no real pain ...just discomfort when in bed and rolling over to turn sides....

Paracetomol is more than enough to take off the edge....it feels much bettter already. Just feels like a small mobile inserted into my left chest.....please dont call me....not sure how to answer it yet...did not get instructions....lol

xxxleigh

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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10 years 3 months ago #31129 by Leigh
Hello Cynthia,

Thank you so much for your links to the trials....

I am looking for options that can help with:

SPINAL FLUID METASTASES

If there are cancer cells in the spinal fluid and there is no brain tumor....(removed just before Christmas),treatment will usually consist of a total dose of 2400 cGy,Radiotheraphy (which I can no longer have as full dose given in Jan 2010.) [Intrathecal drug administration into the spinal fluid seems to be a possibility. An Ommaya reservoir or a ventricular access device may be used to delivery the drug into a ventricle. This is called intraventricular delivery. The drug then circulates from the ventricle throughout the spinal fluid.] chemotherapy. Just finding chemo's that can enter the protective membrane of the brain and fluid that have had some positive effect. And of course finding an Oncologist willling to do it.


xxx leigh

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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10 years 3 months ago - 10 years 3 months ago #31128 by Leigh
Thank you everyone for your kind words of love and support...they truley mean the world to me through these trying times.

I am amazed at the family of friends we have at this site. Recently I have recieved many personal emails from members and guests from this forum. It is wonderful the team of love and support we have at this bladder cancer network.

I understood that we have members and guests that take more of a reading and listening approach to this site....but I am truely inspired by the love and support recently recieved by these wonderful angels enveloping us with positive vibes and support from a small distance. And although you choose not to post but gain your valuable inspiration like many of us here.....I thank you.

We are not alone in our struggles and I thank you wonderful people caring for us with your presence in this cyber world of bladder cancer support.

Love, peace xxx leigh

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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10 years 3 months ago #31127 by Webs
Leigh-

Yours was the first bladder cancer story I ever read. You were the first to shine the light of hope into the darkness this horrid disease had created.

As time went on I looked forward to reading anytime you posted. Your words have always been compassionate, wise, and timely making those that needed them grateful.

Even now when this cruel disease has taken such a horrible turn you have such strength and courage. I wish I had words to help, but all I can say is Thank You.

Thank You I am a better person for having known you. Thank you for all you have said and done. Thank you for being you.

I am sending you hugs and praying that there is someone out there with an answer for you. God bless you and your partner.

Char

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10 years 3 months ago #31121 by Julie
Leigh, Thank you for letting us know your situation. I know how difficult it is to face the fact that there is nothing to be done but wait and have palliative care. I wish I had a way of making it easier. I always think of your unfailing kindness to everyone here. Also if your partner is so inclined he could participate in the caregiver's section. It was of immense help to me. (((((hugs)))))) Julie

Volunteer Coordinator
ABLSC

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10 years 3 months ago - 10 years 3 months ago #31113 by Bill Jr
Leigh, at 63-yo, I find tears running down my face as I read your new diagnosis. I am a bladder cancer pt as well, and I just lost my Mother Tuesday before last to A.M. Leukemia. She lived 13-days after her diagnosis. So, I understand a little of what you are facing.

My prayers are with you!

I trust you have made peace with the Lord and that you know wher you'll spend eternity? Remember, to the saved, "to be absent from the body, is to be present with the Lord". May He be close at your side and may His peace that passes all understanding flood your heart!

We will al be praying for your complete healing!!!!!

God Bless you my FRIEND! This song has a 1 1/2min lead-in!


62
Turbt (May 09)
T1 High grade
Began BCG June 09 (every 3-mo for next 2-yrs)

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