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Looking for answers, hope and miracles

HollyK
Posts: 2
Joined: Jul 2012

Hi everyone,
This is my first post here. I'm learning as I go, so I may not have all of the lingo or information completely correct, so please bear with me. I have been reading the boards for the past few days as I sit by my father's bedside at a community hospital in NJ. He has been in intensive care here for 9 days, rushed here by my mom when he started having difficulty breathing. He is 66 and was diagnosed with EC at the end of March 2012, and began chemotherapy (I don't know which meds; he is a stubborn old bird and hasn't let my mom or I be involved much at all with his treatment until this point). He had chemo once a week for 4 weeks and was scheduled to have surgery, where they were going to remove part of the esophagus and pull up his stomach and connect the two. One day before the scheduled surgery, one of his two surgeons called to tell him that he couldn't have the surgery because it would be too risky. He had gastric maltoma 9 years ago and was successfully treated with radiation; apparently the radiation caused extensive damage to his stomach tissue. So, we lost 2 months where he could have been getting treated, which is so frustrating.

Plan B was to have him start radiation in 3 weeks. During that time, he got progressively sicker and weaker, and he attributed this to the chemo. About 2 1/2 weeks ago, he finally ended up in the ER because he felt so bad (completey exhausted, lethargic, and stomach pains).
He was diagnosed with a mild pneumonia, kept for 2 days for monitoring (at the insistence of his oncologist), given oral antibiotics and sent home. After that, his symptoms continued to get worse, and at this point, he attributed everything to side effects from the chemo and the antibiotics. Finally, he came back to the ER last Monday night because he began having trouble breathing.
(Sorry to ramble, I just have a lot to get out and it's been a nightmare of a week and a half.)

He was diagnosed with a bad double pneumonia and a blood infection and was given 4 different IV antibiotics. They also discovered that the tumor had grown from relatively small to 8 centimeters, and had apparently caused a fistula and a hole to form in his esophagus and chest wall. They put a chest tube in to help drain the fluid from his chest, but his breathing deteriorated over the next few days, and he finally asked to be put on a ventilator. The next step was an extremely risky procedure where the doctors inserted a stent to close off the hole and block the fistula. Thankfully, the procedure went well and seems to be doing it's job. 2 days after that, his lung collapsed and they had to do an emergency procedure where they inserted a second, larger chest tube. (the thought was that the first tube wasn't large enough and probably wasn't getting fluid out of the bottom part of the lung, ultimately causing the collapse.)

Despite all of this, the infectious disease dr. told us today that the antibiotics seem to finally be starting to work and tomorrow they are going to begin gradually weaning him off the ventilator (a little at a time, each day) so that he can hopefully start to breathe on his own and then come off the sedation he's been on since they put the ventilator in. He also had a G-tube inserted during the stent procedure and they began feedings with it today.

So, now, we just wait and see and pray. Most of the doctors are concerned with getting past the infection and pneumonia at this point, but at least one (his infectious disease dr., not his oncologist) has mentioned looking into a tertiary care setting and also surgery.
I understand that at this point, the most important thing is tackling the immediate life-threatening issues before we can proceed to begin tackling the tumor. My mom gets upset when I even talk about "next steps", because she just wants him to pull through the pneumonia and infection and can't think any further beyond that. One of the docs did mention an esophagectomy (or, "tying off the esophagus" as he put it), but my mom doesn't even want to entertain that option at this point, because she thinks that will mean absolutely no quality of life for him. (I have read a bit about rebuilding the esophagus from the small intestine, but I guess that's a little premature). Right now, it isn't relevant, though, because in this conditon, he is not a surgical candidate. The only treatment options I can manage to get out of his oncologist (whom my mother claims is "excellent", but who has an absolutely terrible bedside manner, and keeps telling us not to get our hopes up, that he may never come off the ventilator, etc.) I understand the need to be realistic, but I also am not ready give up the fight yet and I KNOW that my dad isn't ready. He's an amazing, gentle man but he is one heck of a fighter; just retired last year and had what he calls, "the best year of my life". He is definately not ready to be done yet.

I am sure there is more information readers might need to give advice/info, etc. but any insight, or stories of hope and survival would be so wonderful. I should add that as far as my mom and I know, his oncologist never officially staged his cancer. I don't think it was beyond a stage 2 when he was diagnosed, but I am not completely sure of that. Because the tumor has grown so much (although it has not spread beyond the esophagus) and has caused the fistula and other problems, his infectious disease doctor told us today that it had definately advanced. (I seem to get more information from his infectious disease dr. and his gasterinterologist than from anyone else, especially his oncologist).

Ok. thank you for letting me vent/cry/reach out. I appreciate having this outlet and am grateful to everyone here.
Best,
Holly

BMGky
Posts: 666
Joined: May 2010

Sorry you have to find this site but welcome you are here.

Your father's situation is quite difficult. There are so many on here who are more experienced and knowledgeable about EC.

I do know that chemo and the treatment can really be so difficult to go through. It is good you are trying to help.

Others who know so much more than I do will be posting and can be of great resource and support.

Just wanted to let you know that you are not alone. You now have a great group of new friends who can be help.

Hope things start going better for your Dad.

BMGky

HollyK
Posts: 2
Joined: Jul 2012

Thank you all for your helpful comments, suggestions and support. This is just so much to digest.
Today they found a very small new hole in his lung, but the stent is still holding and he seems to be fighting the infection. Tonight his oncologist seemed more empathetic and also a bit more optimistic that he would be weaned from the ventilator. Today they weaned him for about 30 mins but then needed to put him back on it. His pulmonologist was pretty negative, as his lungs are still pretty bad (one is clearing better but the other is still in bad shape).
My mom started having conversations with my sister and I today about my dad's future. He can't stay on the ventilator for more than a few weeks, at which point he would need to go to a trach tube, which I KNOW (and my moms knows) that he wouldn't want. She said she is trying to be realistic so that she doesn't get her hopes up too much, but I am still of the opinion that miracles happen and he could get stronger each day gradually to the point where he can get off the ventilator.
The upsetting news is that the oncologist thinks (he can't remember the scans, he says he'll have to double check. Not sure what that is all about... But, when I pressed him for information on cancer progression, he thought he saw some spots on the scans to indicate spreading to some nodes and part of the stomach.
He did say that my dad is not a candiate for surgery now (in his current state), but that we could try to find a surgeon who would operate, once he gets stronger. He also mentioned pallative care and said there might be other options out there, aside from radiation, which prob. wouldn't be an option given how fragile everything is at this point.

Does anyone have any knowledge/experience with proton therapy? I have done some research and there is a new facility here in NJ close to my parents (ironic, since there are only 5 in the country). It is my understanding that it has the potential to be successful with EC, especially in my dad's case, since the protons precisely target the tumor and not the surround tissue, so there is minimal collateral damage. However, now that there is nodal and stomach involvement, that could be a different story entirely.

Bill, you asked about my situation. I have a younger sister who just flew back to her home in Florida tonight because she can't miss any more work. I am a self-employed glass artist (ironically, I work on a torch, just as my pop did, as he was a welder and a draftsman). I have 2 wonderful children ages 8 and 5, whom I dearly miss, but they are with my sister-in-law in Maryland for the week and they are being spoiled rotten and in wonderful hands. At some point, I will need to return to Massachusetts, where I live, and get back to work and my life there. For now, I am able to be here with my mom and dad, and for that I am grateful.

I will look into the resources and information you shared. I simply REFUSE to give up hope, because if he can just make it through this critical time, I really believe he could have a chance of being a success story, like so many of the Stage IV survivors I've read about on this forum.

Thank you all. Just to be able to talk with others who have shared this experience is tremendously helpful.
You are all wonderful.

Holly

Ginny_B's picture
Ginny_B
Posts: 537
Joined: Sep 2011

Gosh, Holly, you and your family have just been in a whirlwind of medical stuff! Be patient with your mom. She's probably in a world of denial and can't think beyond right now this minute. My mom didn't want to talk about anything, so I just sort of took control. Your dad sounds like a real trooper. I wish you the best in dealing with these difficult issues.

Glad you found your way to this forum. I remember when Ianded here and learned so much!

mardigras's picture
mardigras
Posts: 196
Joined: Sep 2011

Hello Holly and welcome to our family although I am very sorry you find yourself here.
Goodness me you do seem to have your hands full.
Sherri and William have weighed in with all the information for you, and I wouldn't attempt to add to that except to say that their knowledge of this horrible disease is probably the best you will get.
It looks to me as if you have first to deal with the pneumonia, before ever considering the operation for the cancer.
My husband's tumour was 8cms and it was possible for him to have surgery. He had his first scan since surgery in February, and it was clear thank God.
He is 67 and now doing well, but we put a lot of effort into getting him fit to have the surgery. It really is important.
Perhaps it is time to take baby steps.
Step one - beat the pneumonia and come off the ventilator.
Perhaps whilst this process is going on you could try and get some advice from the real experts on EC.
Dr James Lukeditch will answer e-mails, he answered mine. William can put you in touch with him I know.
Step two - consider your options.
Step three - get Dad's strength back by whatever methods work.

I wish you all the luck in the world and will pray for you all.
Hugs and prayers,
Marci

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