KARLY (@karly)

To all of you who have suffered with esophageal cancer my heart goes out to you. My husband was diagnosed Aug 2016 with it. He had 4 strong rounds of chemo then he had his stomach stretched to recreate his esophagus.(1/2017) Within 3 months afterwards he was having a problem swallowing. Fortunately he still had the jtube. He had 6 dilations from March to July. The doctor couldn’t understand why he couldn’t swallow. Finally a stint was placed in his throat. Then he couldn’t breathe they removed the stint because it was being covered by scar tissue then when it was removed both of his vocal folds were paralyzed and then a tracheostomy. At this time we were told there was no cancer. I kept asking this. But thinking back no one really checked. Then we find out after being sent to Stanford the end of July within the scar tissue There was cancer!!! He has not had anything to eat or drink by mouth since. It has been mentioned that if he can be cancer free they will place a stint so that he could eat and swallow his spit. The doctor at Stanford even mentioned another type of surgery but His PETs keep showing up with a little cancer here and there. Then chemo or radiation. The last doctor we saw told us that his cancer was high in his throat where usually it is lower. Then she explains that the longer you stretch a rubber band it is smaller and tighter so my question is, why did he have this surgery since it was so high up? Deep down I feel there were mistakes made along the way. If I had to do this again I would get a 2nd and 3rd opinion. It is just that when you hear cancer you freak out! My husband was very healthy so we never saw hospitals for anything! This was and is all new to us. It is so sad to see him just sit my heart breaks. He can’t swallow, he can hardly talk. He is constantly battling with this trach. I wished I could have said way back then WAIT we need another opinion or two. Good luck to you all and my prayers are with you and your healing. My thought is that esophageal cancer comes on slowly you may have it for quite awhile before you are actually diagnosed so take the time and get that 2nd or 3rd opinion. Ask a lot of questions.

I am always interested to hear what others are going through. My husband was diagnosed with esophaguses cancer Aug 2016. He had 4 rounds of very strong chemo and then in Jan 2017 he had a gastric bypass. He has not recovered yet and has been on strictly tube feeding since July 2017. He can’t even swallow his own spit. His throat is filled with scar tissue and last July they removed a stint from his throat and both vocal cords went paralyzed. As of then they placed a trach in so he could breathe. Since then cancer would spur up in various spots, his thighs, then gone, his back, then gone, his voice box and we need to see if it is still there. Waiting for another PET to see if he is cancer free. Is so they are going to try another stint. It has all been overwhelming and very bizarre. So as a caregiver I am always interested in anything and any new medical procedures.

My husband was diagnosed with esophageal cancer August 2016. He had strong chemo and then surgery where his stomach was stretched to form a new esophagus. His throat kept closing up and stents were not helping. We then found out that there was more cancer and in the course of removing a stent his vocal cords were both paralyzed. So it has been over a year since he has had any thing to swallow. He is on tube feeding and he has a trach. Has there ever been a time when a trach has been removed? Has anyone experienced this before. There is talk that once he is cancer free they could possibly do another surgery to make it so that he could swallow but would lose his voice and still have to have a trach. Has anyone had any experience with this? Latest PET scan shows some small spots of cancer, in throat and near the spine? They just changed his chemo cocktail to something different so now he gets sicker.
I am not sure if we should maybe get a second opinion. Any suggestions?

I was just reading over what you wrote about your husband and was wondering how things are going? My husband’s cancer to the top portion of his thighs. He recently finished 25 rounds of radiation and at the end of this month we will get further details. He is still on the herceptin and folfox it is amazing to me how the cancer can spread when you are being treated with chemo. He still has not been able to swallow or eat anything now for a year.

For my husband we use medical tape to secure it and a cloth gauze next to the skin or shall I say in beteeen the plastic and skin then it is all taped down with a cloth tape

My husband’s cancer was also diagnosed in August 2016 and it was staged at a 2, however never really heard too much about the staging process. After the surgery it was completely gone according to our doctor. Then it was August 2017 he was sent to Stanford and they found the additional. So he is in the chemo/herceptin treatment now. So he had one CT scan and it showed shrinkage of tumors. On the 23rd we go to Stanford to have his throat dilated so that hopefully he can swallow. I can’t imamgine he can’t swallow or talk. No immunotherapy is available for him at this time. My prayers go out to you both and yes it is a roller coaster ride! I never did like them to begin with. How is your husband’s spirit through all of this.
Prayers to you and your husband .

My husband is currently on Herceptin for his esophageal cancer along with another chemo drug. His tumors have the HER2 markers so the Stanford doctors recommended this. This is his second round of chemo. The first round he had four strong treatments of chemo, then surgery to remove the cancer and remake the esophagus from using his stomach. Because of the scare tissue afterwords he had 6 dilations because his throat kept closing up. Then a stent was placed in his throat and it was removed because scare tissue was growing over it! During the course of this when it was removed his vocal folds went into spasms and are now paralyzed shut! He now has a trach. We were then sent to Stanford and they found within the scare tissue cancer was growing and had spread to lymphs and against his spine. This has been very frustrating for us as he still can’t even swallow water!!
So far we have not heard of Keytruda or has he used it.

Oh yes he has a J tube because he can’t even swallow water! It is in his intestine not the stomach