up date on hubby

nancyann3

Finally got to see doc today. I did get to state my frustration and it felt good! The med onc was sympathetic and apologized. I told him I felt like I had been pushed out of a airplane without a paracute.

Anyway here is where we stand. The cancer is growing and is worse now then at the beginning of treatment. Lots of cancer in the esophagus and more node involvement around esophagus and trachea. A couple tiny spots in lungs, but they are not sure about that. The med onc does have more to offer as far as chemo and they are trying to get him in a clinical trial, but I don't know the name of the pill used in the trial yet. Now we are dealing with infected j tube site. The med onc got that ball rolling quickly when he saw it. They took cultures to test the site and started him on antibiotics. Once we have this under control we will move forward with treatment. They are talking about pallitive care and I think they consider him terminal, but we arent letting that stop us. I was telling the doc about tb7's story and he said really? I said yes, so anything is possible, and he agreed.

I read your stories everyday on here and when I go to the doc with hubby, its almose like you are all there with me. It really helps. I am so blessed to have found this site.

Monday we see the surg onc and I will say my piece with him too. I have med records in hand now and we are still planning on the second opinion.


I will keep you updated.
Nancy

zinniemay

go for it
Nancy, I think we have to go for it. They said my husband has lets see 6 months, 11 months one year without treatment 2 maybe with treatment. I think they do not know so they play a guessing game. My husband did not have any surgeries or any tubes, he had radation and Chemo that was 2009 he finished treatment May 1 2009. He is still doing everything he always done. He eats he is amazing to me. We go tomorrow to see if this treatment is working.

MOE58

Nancy Im sorry
Hey girl,

I am sorry for such bad news, the pallative care does mean its terminal, (thats where my dad was put when they couldn't do no more he last 3 weeks). I know the circumstances and no matter what happens you will always be there, if you need to talk private message me.

Lori

tb7

Some thoughts . . .
So far, ours is a good story! We go again for a CT scan on Friday, and are hopeful that the results will be positive. Had we accepted the suggestion regarding palliative care, who knows where or what condition we would be in today. My husband is still working full-time and will continue to fight this disease as long as he can. We were told that EC is, most certainly, a life-threatening disease, but that we need to remain optimistic about the future, especially since treating EC today is quite different from treating it ten years ago. New drugs are being used in treatment that did not even exist seven years ago. So, even though EC, when it recurs, is regarded as a “terminal” condition, we were encouraged to look upon it as a “chronic” condition that would always require treatment when recurrences surfaced. And, we were told to expect recurrences. Some EC cells, in our doctor’s opinion, are inherently resistant to certain chemo agents, so we will have to keep fighting to combat this disease.

My husband is just starting to exercise again. He is not as strong nor as energetic as he used to be, but he is encouraged that he can get out, when the weather is nice, for long walks and medium length bike rides. Right now, he is fighting an annoying rash that we think is a by-product of the experimental chemo agent. He also is experiencing, for the first time, some neuropathy. We will know more on Friday, and I will update you!

I would recommend that you search, on your own, the NIH website for trials that might be applicable to your situation. We felt that our original oncologist was quite unaware of the possibilities for treating EC. We did our own research and found several trials that were open. We set an appointment with the trial that was closest to where we live. The oncologist associated with the trial provided us with a wealth of information about the trial he was involved in. He also fielded many questions about EC as well as other trials throughout the country. In the end, we felt that the trial we entered would be a good one and staying close to home was a major advantage.

I wish you the best in your quest to get a good direction for treatment. I no longer get concerned about how medical personnel view my comments, questions (probably sometimes uniformed questions), etc. At the end of the day, we are the ones fighting, in the most personal way, this awful cancer. If we fail in our diligence to get answers and appropriate guidance, we fail not only ourselves, but other patients who are diagnosed later as well as the medical community. It is only through us that they will learn and, hopefully, be able, in the future, to have many more treatment successes. And, the best result would be to have all of us included as a treatment success!!

Good luck and best wishes always,

Trisha

P. S. Sorry for the long-winded reply. Couldn’t sleep, so thought I would write!

tb7

Another thought . . .
Hi again!

Where are you considering getting a second opinion? You don't really need to answer . . . I just hope you are going to a major cancer center for the advice. I just feel they are so much more prepared for treating EC.

That is it for tonight/this morning . . . going to bed now,

Trisha

nancyann3

tb7 said:

Another thought . . .
Hi again!

Where are you considering getting a second opinion? You don't really need to answer . . . I just hope you are going to a major cancer center for the advice. I just feel they are so much more prepared for treating EC.

That is it for tonight/this morning . . . going to bed now,

Trisha

Thanks for all the info
Unfortunately, I wouldn't call where we are looking into a major cancer center. We live in Ky and not much opportunity it seems. We live in Louisville, are 80 miles from Lexington. 150 miles from Nashville. 260 Miles from St. Louis, Mo. I think around 150 from Indianapolis, In. I any of you know of good centers for EC around here please let me know. On the National Cancer Institute website, Ky doesn't have a center listed.

Is that the website you were refering to about clinical trials? tb7...

Thanks
Nancy

tb7

nancyann3 said:

Thanks for all the info
Unfortunately, I wouldn't call where we are looking into a major cancer center. We live in Ky and not much opportunity it seems. We live in Louisville, are 80 miles from Lexington. 150 miles from Nashville. 260 Miles from St. Louis, Mo. I think around 150 from Indianapolis, In. I any of you know of good centers for EC around here please let me know. On the National Cancer Institute website, Ky doesn't have a center listed.

Is that the website you were refering to about clinical trials? tb7...

Thanks
Nancy

Additional info . . .
Hi Nancy!

I can’t believe there is nothing close to you . . . I guess we were really fortunate to have a center so close to us.

Others will probably also advise you, but it might be worth the drive for a second opinion at a major cancer center. There are some people on this website who have had their treatment directed by a center but who continue to use an oncologist close to them. Looks like the closest center to you would be at Indiana University in Indianapolis . . .

Indiana University Melvin and Bren Simon Cancer Center
Patrick J. Loehrer, Sr., M.D., Director
Indiana Cancer Pavilion
535 Barnhill Drive, Room 455
Indianapolis, Indiana 46202-5289
Tel: (317) 278-0070
Fax: (317) 278-0074

William Marshall has recently suggested the Vanderbilt-Ingram Cancer Center at Vanderbilt University in Nashville to another person on this discussion board. Although the drive would be further, it might be worth checking them out as well, since they have what looks like a dedicated EC team . . .

http://www.vicc.org/cancers/disease.php?name=esophageal-cancer

I have included info about trials. Don’t know that you should pursue trials just yet, not until you are more informed about what treatment options actually exist for you. When we faced a recurrence twenty-one months after initial treatment and surgery, we decided to participate in the trial as it offered an extra “ingredient” in treatment, over and above what might normally have been given for a recurrence.

http://www.cancer.gov/clinicaltrials/finding/treatment-trial-guide
http://www.cancer.gov/clinicaltrials/search

Hope this helps you a bit . . .

Trisha

K_ann1015

nancyann3 said:

Thanks for all the info
Unfortunately, I wouldn't call where we are looking into a major cancer center. We live in Ky and not much opportunity it seems. We live in Louisville, are 80 miles from Lexington. 150 miles from Nashville. 260 Miles from St. Louis, Mo. I think around 150 from Indianapolis, In. I any of you know of good centers for EC around here please let me know. On the National Cancer Institute website, Ky doesn't have a center listed.

Is that the website you were refering to about clinical trials? tb7...

Thanks
Nancy

I am in Louisville
Hi Nancy
I am in Louisville KY too!---But my dad -the one that needed treatment, lived in NC and got it at DUKE. At first they were in upstate NY---(way upstate near canada) and finally were convinced that they had to go to a major cancer center for treatment. I thought maybe the Brown Cancer here in Louisville might be an option, but it doesn't seem???to have experts in that field, but never got far in looking bc my parents wanted to be near where they live in the winter---NC. So I am not much help in what is available here but I can look into it. I have some contacts know if I can find any good suggestions.

Send an private email message thru this site and we can communicate thru email or face book and find options!

DON'T GIVE UP!!!!!!!

Kim Priest
Louisville KY

nancyann3

Thanks again
As always thanks for all the prayers and advice. We will be getting started on chemo again soon. We still are maintaining a lot of hope.

Take care
Nancy