newly diagnosed in Boston-- Allan-- age 67

Pat,
I am so sorry to hear
Pat,

I am so sorry to hear your news but please know you have found a place here where you can find answers to questions, support, inspiration and even vent on those days you don't think you can go on.

I am sure William will be posting one of his informative letters.

My 79 year old dad is the patient, he was diagnosed in Dec of 2009 T3N1M0, he had some setbacks and difficulties with the chemo and radiation and the cancer spread to his liver in June. He is now Stage IVb and inoperable. One thing I would urge you to do if you haven't already is to have Allan's tumor tested for the HER2 gene so you can determine if he is a candidate for Herceptin. Herceptin was approved by the FDA last fall for treatment in Esophageal Cancer --- it is a drug used in addition to other chemo drugs.

Also, it is critical that Allan stay hydrated - it will be difficult but if necessary ask for extra IV fluids, try to make sure he drinks as much as possible. Getting dehydrated is one of the real dangers of treatment and waiting too long to get fluids can be deadly. Make sure that even if he doesn't want to drink or won't ask for fluids you get him to the hospital or the doctor for fluids --- it can make all the difference. You don't want him to become debilitated because of dehydration.

Also, after you have done several rounds of chemo if they don't seem to work or the chemo is too hard on Allan there may be the option of checking into the possibility of a clinical trial. There is hope, there are ways to manage the cancer and remember you are a statistic of one. There are many on this board that have lived many months beyond what was expected, my father is one of them.

Ask questions, don't assume the doctors are always right. Make sure someone is with Allan at his appointments, keep notes and write down questions. This can be overwhelming at times but you will begin to get your bearings. I am pasting a message Sherri, our online expert, posted a while back - her husband Jim Stage IVb has been battling EC for over 19 months and has really fought the battle with courage.

Good luck and feel free to contact me anytime if you have a question.

Good luck,
Cindy

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• http://csn.cancer.org/node/190270

"APRIL 15, 2010 - 6:29pm

FOR THE NEWLY DIAGNOSED

You are about to enter the roller coaster from hell. Unfortunately, you don't have time to feel sorry for yourselves. You must move on to fight the beast. Whether you are stage i or stage iv, only believe half of what is told and rely on your own knowledge of yourself or your loved one with the exception if you get a doctor who is upbeat and willing to go the extra mile for you. Remember whatever they tell you is statistical, clinical or factual and that they don't know you as an individual. Since coming on in June, Ihave read many stories where as the patient or the spouse is afraid to confront the doctors or to get a second or even a third opinion. I have also read where the caretaker is afraid to take control of the situation due to either fear or an uncooperative spouse or patient.

Remember to question everything and anything and if the doctor doesn't like this then find another. Remember that you are the patient and that they are working for you. Research everything and talk about it in your appointments. Never be frightened to ask questions. Even better is when you are with the onco staff, ask then whom I may call to get immediate answers.

Know your cancer! Look up where it may metastasize to and be one step ahead with questions or clinical trials. Don't hesitate to ask them about the HER2 gene and has my tumor been tested? Remember to ask about supplements that can help you while you are on chemo or radiation. Ours allowed us to do what we wanted, especially for chemo related neuropathy.

When you are first diagnosed, we sit their numbly, dumbfounded, afraid, intimidated, shell-shocked and can't believe what we are hearing. Well believe it quickly, take a few deep breaths and begin the fight. The ones that delay treatment are the ones that suffer in the long run. Don't dwell on i should haves or i could haves, it's too late for that. Get going on the cure or the treatment. You can still lead a productive life. Push yourself and do not give up hope. Ever!!! Only god knows when it is your time. Have faith in yourselves and know that you are not alone. We are here to answer your questions to the best of our ability. We have been through heartache. We have lost loved ones dear to us. We have cried together over someone we have never met. We are a family and you may not like what we have to say but we care and have the experience.

You will meet people here that have experienced it all. We have people that have been fighting for their lives all along but continue success. We have our not-a-surgical-candidate patients that have overcome their projected life spans and are doing well. We have people that have had the surgery and have been cured or are in remission. We have had many who have lost their loved ones but still come on to help others. They share their experiences without a second thought. Many give out their personal phone numbers to help some and others become great friends even though they have never met. Just remember that you are in the right place and you will get honest, experienced answers from people who have walked in the shoes of esophageal cancer.

Good luck and best wishes to all of you in your fight against esophageal cancer. There will always be someone here to answer your questions the best they know how to. Remember that we here have had success no matter how old you are. Our goal is to beat it now or in the future by helping others. You are never alone!

Sherri"
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Chyenne25 said:

Beginning the Maze
My husband is 45 years old and is in the process of being diagnosed with EC. Already we have been going around and around. He was having trouble swallowing, and on Dec 16th we went for an endoscopy, where the gastroenterologist found a mass that had "cancerous characteristics". Went for a barium swallow the next day. Didn't hear from the doctor. Wasn't sure if it was due to the holidays. So finally spoke to him on Dec 29th, and he said the biopsy came back negative, but showing hyperplastic changes, and the barium swallow showed significant narrowing of the upper esophagus. He had us schedule an appt with a thorasic surgeon yesterday, Jan 11th. We show up at the surgeon's office, and he said that he had requested to the gastroenterologist that my husband have a 2nd endoscopy before the surgeon visit to get a better biopsy, because he said it's rare that the biopsy comes back negative

So...he scheduled my husband for a chemo dr. and radiation dr. for tomorrow. Not sure what they will do without the 2nd biopsy and definitive diagnosis, but we're going anyway (figure the more people we talk to the better)

When I called the gastroenterologist's office, the secretary said that he was waiting for the surgeon's report before scheduling the second biopsy?!?? The dr was supposed to call me last night...but didn't. And didn't call today either. Maybe he stayed home because of the blizzard we got...

Right now, I would just like to find someone that can help my husband eat...he's having so much difficulty.

I don't know where to begin to get answers. I still have that little ray of hope that it's something else. Any advice will be appreciated...thank you

Chyenne WE need more info to help
I feel your pain---but we need more info to help more effectively.

What part of the country are you in, what hospital are you going to? You need to go to a hospital that sees A LOT of EC patients, as they tend to be more effective and aggressive when needed. I am sure William and others will be more eloquent and helpful---I apologize that I am not more helpful --- but I know this board can help you---Blessings to you and your husband. We look forward to hear more from you.

Others out there---any others suggestions for Chyenne???

Kim