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chris3455's Message Board Messages

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That’s really great! But Chris is stage IV and no one will operate on him. They say it’s too dangerous.
Hi Karen, It’s very late right now. For at least me and Chris. ?? But I will surely get ahold of you to talk about other options. We are so frustrated and the doctors seem to think this is all normal. Doesn’t seem normal to us! Thank you for responding. Marcia

Hi All,

My husband is supposed to have 27 radiation treatments to his esophagus.  They have only suggested this recently. He has had 11 treatments so far. But, the radiation has caused him to have such severe nausea that he has had to skip at least 5 treatments. Has anyone had this response? I mean every hour he has been sick. 

Also, he is in his 3rd year of this disease and has been on Keytruda for the last 2 years.  They say because he still has mets in his lymph nodes and kidney they will not operate.

He was working and going to job sites before radiation and now he can barely get out of his lazy boy.  I'm so worried about him.  He is supposed to go get keytruda and radiation today, but i'm afraid he might have to cancel again! 

Thank you, 

Marcia 

RE: cryotherapy ?

by Chris3455 - May 20 at 6:32 PM

On May 03, 2019 9:54 AM akb1972 wrote:

Any experiences with crytherapy to treat recurrent EC (adeno) with lymph node mets (i.e. no mets to any other organs) ? 

Hi,

I was told by our radiologist that you should not have cryotherapy while you are having radiation treatments and maybe chemo, because essentially the cryotherapy is adding oxogyn to your system which not only feeds your good blood cells but also the bad cancer cells.  He feels that after treatment it could help a lot.  But he absolutely does not think it should be done while your on radiation.  You should talk with your oncologist about chemo.

Hi John,

Holy cow! I have a had a pill stuck sideways in my throat and that is awful.  I can't imagine it happening and feeling like you can't breathe. That sounds so scary! You have given me so much good information.  I am really happy to have met you. :)

Chris's tumor is in his lower esophagus and growing tube between his stomach and esophagus. I couldn't tell you how large it is., but until about two weeks ago he could feel a tiny bit of saliva or water get through. Ever since he got his feeding tube he's been carrying around one of those large cups from the hospital and spits saliva and water in there.  He does that with food and water...but has trained himself to not to swallow. 

I can't believe the Doctor's never suggested radiation till now.  We are pretty pissed off about that, since i keep reading most people have radiation and chemo right away. He might have been able to eat a long time ago!

Oh well, we are going to not dwell on it and just keep on going and stay positive about the hopes that this will work. I hope he reads our posts.  I hooked him up so we are both connected with the same login.  It's really nice to be able to talk to someone who has/is going through the same thing. 

Hi John,

I guess i didn't read the whole message!  You've had 14 dilations!?! Did they tell you why so many?  Does your esophagus just keep closing back up?  

I am going to ask our radiologist and see what he says.  I will pass that along to you.

Thank you, Marcia

Hi Susan, 

I hope you got my last message.  I don't think i sent it directly to you.  Just go to the feed and you will see my response.

Have a great day!

Marcia

Hi Susan,

Thank you so much for replying I am so happy to hear your dilations worked.  Sucked it happened because of your radiation.  Our main goal is to get Chris to start eating again. He has not eaten a solid meal in almost 2 years. The feeding tube hurts as bad or more than the treatment he is getting. I am so hopeful that the radiation will shrink his tumor so he can eat. And will definitely ask him about dilation. His esophagus was almost completely closed before he started the immunotherapy so i am not going to say it was caused by that. Prayers to you and your good health. My best, Marcia  

On May 09, 2019 2:47 PM cagy2 wrote:

On May 07, 2019 9:36 AM Chris3455 wrote:

Hi, My husband has had stage IV Esophageal Cancer for 3 years now. He’s been treated with a chemo & Keytruda trial, Folfox alone, and now for the past two years Keytruda alone. The Keytruda has been great for all the cancer in his liver but has not touch his lymph nodes or the original tumor which has now grown into his stomach. Now, skin has completely grown over his esophagus. Has anyone ever experienced this? And what did the doctors do ? He is supposed to start his very first round of radiation next week. Any advise would be great. Thank you, Marcia

Marcia, I have had the same cancer stage 4 twice.  Once on tongue and once in espophagus.  My throat swelled shut for 6 weeks from the radiation and it took 3 dilations 2 weeks part to open it and since then It's been normal. That was over 3 years ago. I have had 14 dilation since 2018.   I doubt that the skin has grown shut, if so blame the Dr. for not keeping tabs on him.  I have had excellant Dr's but I have had family members die from listen to their Dr's too.  NEVER trust a Dr. with your life no matter how you feel.  Get a 2nd opinion for peace of mind. NOT having radiation first was a big mistake.  Chemo can be devastating and I would NEVER go thru that again because it destroys your kidneys.  Ask your DR.!  My creatine level is holding at 1.67 and will never get better.  Started out at 1.1  I have had cancer 5 times since 2010 and am 80 years old.  Message me back for any support you need,  John

Hi John,

I am so sorry to hear you have had this terrible cancer and twice! Oh my gosh. Lord, I hope he wont have to keep getting dialations. Are you able to eat normal now?  He's had this feeding tube for about 2 years and that is almost worse than the medicines. We have been going to so many doctors and they do CT scans about every 3-6 months.  And we only get an endoscopy if we ask.  We have been very vigilant, but Chris is so frustrated and we didn't think we could have the radiation because it was so close to his stomach. We just found out recently (a little over a month ago) that he could have it! Been to Moffit in Florida, our cancer dr., our gastroenterologist, and the radiologist. Now, finally he is going to get the radiation. I'll keep you posted on how that goes.  We talk to the radiologist on 5.14.19.

Thank you so much for writing back to me and best wishes to you in your recovery. Marcia

Complete closure of esophagus

by Chris3455 - May 07 at 9:36 AM

Hi, My husband has had stage IV Esophageal Cancer for 3 years now. He’s been treated with a chemo & Keytruda trial, Folfox alone, and now for the past two years Keytruda alone. The Keytruda has been great for all the cancer in his liver but has not touch his lymph nodes or the original tumor which has now grown into his stomach. Now, skin has completely grown over his esophagus. Has anyone ever experienced this? And what did the doctors do ? He is supposed to start his very first round of radiation next week. Any advise would be great. Thank you, Marcia
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