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An update on my husband Tom

Posts: 391
Joined: Jul 2009

I read the board every night but I don't post very often. It's been awhile since I upddated Tom's condition etc.

For new people, he was diagnosed with squamos ec in July 2009. His initial treatment was taxol, cisplation and erbitux in a clinical trial at the U of Chicago. Concurrently he had radiation every day for 6 weeks and hydration every Thursday and Friday. It took a toll, he lost hair (not that much there to begin with) and taste and his energy was nil.

His ct scan in December 2009 showed he was NED. It was totally a surprise. His dr never gave us a time frame for how long he would live. She was determined to beat it. He was not a candidate for surgery even though he would of been elsewhere.

The cancer returned in the same spot in Dec 2010. She started him immediately on carboplatin and taxol every three weeks. In March of 2011, he woke up one morning and could barely walk. Neuropathy had hit and it was just about a knock out punch. They switched him to Taxotere every week and of course there goes your taste again. None of his scans showed any advancement of the cancer at all. One of his scans did show a blood clot in his lungs..so he added Lovanox 2x a day.

This Jan he had a lot of chest congestion. An x ray showed fluid in between the linings in the right lung. So he had it drained...it showed no cancer. The scan never showed any cancer growth. Next he had fluid drained from the heart lining. All along the congrestion didn't get better. I told him two months ago he needed breathing treatments and he said he didn't. Well, he did. When one foot was swollen, his onc wanted him in there ER immediately. I have been once in a Chicago ER and never again. Different hospital, it was filthy and of course full of sick people. If you aren't sick, you will be when you leave. So he decided to go to our local hospital, it's 5 mins away. Nothing showed in his legs, she was concerned about a blood clot.

he was due to have a permanent drain put in his lungs...and had an appointment in Chicago, but choose to do it here. They were some much more efficient at our local hospital. OK so that has to be drained three times a week. I get to do it..with sterile gloves that are way too big. I have ordered small ones.

Friday, his onc said...they'll drain it there and check for cancer..there hasn't been any for two times. If it's clear...no chemo now, since the cancer hasn't done anything if it's still there. CT in June and if it's the same, no chemo, 3 month CT scans.

Reading or believing the stasticis, he shouldn't be here..but he is.

It will be three years for him in July. It hasn't always been an easy 3 years, but it has been three years and his birthday is Monday...70 We didn't think he'd see another one in 2009. But he's still here. Sure it's hard for him to walk and he has tired times but mostly it's ok.

So this is to let your know where we're at and to give some hope to new people.

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sandy1943's picture
Posts: 883
Joined: Jun 2010

Jan, Thanks for the update. So glad to hear Tom is doing so well. The road has been tough and I'm praying the future will be good for both of you.
Keep us updated,

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Ginny_B's picture
Posts: 543
Joined: Sep 2011

Wow! Sounds like he's a winner. You keep up the good fight!

Donna70's picture
Posts: 921
Joined: Aug 2009

Hi Jan,
Glad you gave us all an update on Tom. So glad he has clear fluid with no cancer cells and his story is a lesson to all about statistics and how little they mean with this crazy disease. Happy Birthday Tom. My Ron will turn 70 in September, time sure flies. Hope that you get some good days with more energy and less tiredness. YOu all have done a great job of caretaking. Many hugs and prayers for you and Tom,

paul61's picture
Posts: 1250
Joined: Apr 2010


Thanks for the update on Tom. I am so glad that he is still defying the odds. I was hoping that his neuropathy improved enough for him to enjoy some of the time you spent in Florida. I hope he has a great birthday today.

Best Regards,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

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