KARLY (@karly)

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

Hi Angela!
I just did read your post. I am so sorry you guys are going through this and so much! I just hate this cancer!!! We have listened to the doctors but I am thinking they are only human and we are all so unique. What might work for one doesn’t always work for the next. Thank you for sharing all you have both gone through. I will keep my ears and eyes open and ask questions . When this first started the surgeon told us that if we had cancer this was the best one to have . From the sounds of it, I don’t think you and I know we don’t believe that one. Yes, God Bless us all
Karly

We met with the tumor board mid September. They have referred my husband to 5 weeks of radiation , 5 days a week and chemo once a week for the 5 weeks. He starts tomorrow. After this is complete they will do a scan to see of the tumor has shrunk. Because the doctors at Stanford biopsied the tumor his tumor has HER2 and responds to herceptin he will have 3-6 months of infusions of this drug along with chemo. One will be done every two weeks and the other every third week. Then another scan will be done. The cancer was found in the scar tissue and some of the lymphs. It is larger than it was originally which totally amazes me! How did this happen and in a months time? It has been very difficult, I can’t even express how difficult. In January he had the removal of the esophagus and it was recreated by using his stomach. The scar tissue was growing afterwards so they would do dilations then a stint was placed in his throat. Then it was getting hard to swallow so the stint was removed in July and that is when his vocal cords became paralyzed. Then the tracheotomy so he could breath. We are hoping that once he starts his treatments that he will be able to eat and swallow. Pretty bad he can’t even swallow water!
So if anyone has experienced any of this I would sure welcome all the support and hope you can share.