Where does one start on this journey

unknown said:

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In all sincerity
Hi there,
I am reposting a part of my first post on this discussion board and added more in response to your posts.

My wife has Fanconi Anaemia, a condition which gives rise to cancerous tumors. Since 1996, she has had base of tonge-squamua cell carcinoma (scc) , aesophogectomy (scc) & gastric pull-up - Prof Orringer - Anne Arbor Michigan- a unique, professional and simply amazing human being(2008), larengpharingial scc, lung scc. There are differences of opinion weather lung was secondry or not.

So she has amazingly fought her way out of hospital each time. She' gone through the nutrician, dumping, eating, swallowing, peg, dilations, etc etc etc difficulties like alot of you here.

Fanconi Aneamic people have hypersensitivity to chemo which can be lethal and radiation has been ruled out too. Owing to the above and given her latest pharynx and lung lesions,"we" are on Erbitux only.

I'd like to know if anyone on this site knows of anyone who has Fanconi Aneamia. There are few survivng adults around, yet alone any info regarding case treatments . I cant tell you how wretched this is.

I dont know where to start really, but i thought that if the lung lesion was from the original aesoph cancer, maybe i should be on this discussion board. As it is difficult for me to take in vast amounts of info, i have tried my best to keep abreast of what doctors say around me.

Having read the latest posts here, i cannot help feeling that i havent done enough.
We stand befor "our" next PET CT on June 21, to see if the erbitux has in fact had any effect on preveiously discovered microscopically visible cell pharynx.

It looks like i need to go back into my wifes records and state everything shes had and goner through. I have a "politically correct" relationship with the Med team, who have followed her disease and recoveries. This "politically correct relationship" has had its ups and downs.

We are so tired. The aesoph surgeon of two years ago, believes that the lung was actaully from the orig esoph cancer and his advice has been to enjoy life as much as we can, while we can.

I wish i could just find someone who would be our personal on hand manager.Im not even sure which post i should be on anymore. Sorry to put such a damper on the amazing previouse 2 or 3 posts here.
We are so tired. We wait again......
In all sincerity and admiration for all of you

Clear. B.

jymbob said:

Thanx for you kind words
The doctors diagnosis is stage 4B inoperable, has spread through the major organs as we were shown on the ct scans the liver is covered along with all the lymph nodes under the pancreas etc. I am located on the Okanagan Valley in BC Canada. The doctor stated we would begin palliative radiation immediately as in Monday. So far this is basically all we know. medically, As I stated we were just final diagnosed on 3 days ago.
jym

Welcome
Hi Jymbob
Welcome to the EC family. I was a caregiver for my dad. He passed away in March from EC, which metasthsized to his liver. He too was at stage IV.He too was inoperable. He had six weeks of chemo and radiation. He did quite well for about 12 months. Once it went to his liver, he went down hill, physically and mentally. I do agree with the others about always getting a second opinion. I can not believe with all of the organs that are effected, you were just recently diagnosed! I would think that you would have a lot of symptoms, and would have gotten to the dr. and diagnosed sooner.
I do not know anything about the medical or cancer centers in Canada. I am sure there will be others here that will reply, that are familiar with Canada. Best of luck to you, We will be praying for you. Stay positive. Your mental outlook is half the battle. Keep in touch.
Tina

Hi Jymbob,
I wish my father
Hi Jymbob,

I wish my father was on this site. He was diagnosed with Stage IV EC in December with mets to bone and started chemo the first week of the new year (2010). He biggest side effect from treatment has been fatigue along with the usual -- loss of hair (a little), weird taste for foods and some digestive problems. He has his good days where he can go mow the lawn or take a walk. He also has not so good days. One of the things we learned recently was keeping hydrated. My father would get fluids during every treatment. This isn't enough so he's getting fluids in between treatment as well to help keep his energy up. I hope this helps.

As a daughter of someone with EC, the initial diagnosis was quite scary. Right now, I keep my focus on the day vs. what we might encounter next. It has been the hardest thing for me to "get."

I am sending positive thoughts to you and your family.

Carolyn

Welcome Jymbob
Welcome to this site Jymbob. You have come to the right place. The people here are amazing. They are helpful,informative and inspirational.

My husband is also stage IVb-inoperable. And though this road has had many potholes and detours for him, he forges ahead. We too have just celebrated our 31st anniversary. We are in this battle together, just as you and your wife will fight this EC beast.

While no two patients are alike, there is a wealth of information on this site. Take notes of things you want to ask your doctor. I keep a journal of our days and all that we go through. It has been quite helpful at times to be able to look back at what exactly happened or how he felt or what we did.

And especially now...when you are quite numb from the news, it helps just to express yourself.

Please keep in touch (your wife,too).

Thoughts and prayers coming your way....

Marta