Mayo Clinic Connect
Looking for any experience or treatment with melanoma of the esophagus. My mother was diagnosed in Dec 2017 and is being treated with Pembro (Keytruda).
There are several members who have had treatment with Keytruda. See this discussion here:
– Keytruda https://connect.mayoclinic.org/discussion/keytruda/
I'm also inviting @alpaca @adriennef @angelag @karly and @gaybinator into this discussion. CanadianCottager, we wait for others to join the discussion, can you tell us a bit more about you and your mom. Has she had surgery? How are you doing? How is she doing?
Liked by Kanaaz Pereira, Connect Moderator
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.
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I am so sorry to hear of your husband's ordeal with this horrific disease. My husband was diagnosed stage 4 in August 2016. He was declared in complete remission in February 2017 but cancer was found again – thickening of stomach and 3 spots in liver. We are going to Yale on 2/21 to speak with an oncologist there about immunotherapy. The conventional way to treat this is with chemo and radiation which my husband may choose to do rather than the immunotherapy trial. It's most definitely a roller coaster ride. Prayers are with you.
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 .
Thank you for your prayers Karly. My husband is a very positive person – I'm the one who thinks of all the negatives and it drives him nuts. He is actually still working – commuting to New York City from Connecticut daily to his job. He is also HER 2+ and is infused with herceptin every 2 weeks along with a maintenance chemo. Chemo has been stopped however to get his body stronger for the immunotherapy drug should he decide to go for it — he was very anemic and his oncologist thought it was from chemo. As a result he's eating more. He has a stent as well and it seems to be ok so far. He had malignant tumor in his cerebellum (brain) in late August 2017, was operated on at Yale then had radiation to clear anything that might have been missed. He was at work a week later. It was at that time his personal oncologist was contacted by the oncologist at Yale who said my husband might be a candidate for a trial which is starting now, i.e. 2018.
That's our story so far and I hope both our husbands continue well. I'm thrilled to hear your husband's CT scan showed the tumors shrinking. Is he on folfox plus herceptin? That's what put my husband into remission even though briefly. Fingers crossed Karly and positive thoughts and prayers – we'll get through this.
Liked by Jamie Olson, Maureen, Volunteer Mentor, Adrienne, Alumna Mentor
My is 89 years old. She has had one treatment of Keytruda IV. Her second treatment is in a few days. The doctor said it is stage four with just one lymph node involvement. Unfortunately she is being treated for c-diff with flagyl and is quite nauseated and fatigued. She had lost a lot of weight and doesn’t have an appetite.
I am wondering about any other adjuvant therapies. She is too old for surgery and will unlikely agree to chemo.
She was healthy before this diagnosis which is why the treatment was offered.
Melanoma of the esophagus is very rare and I would like to find others who have had treatment with immunotherapy.
Hello @canadiancottager ! Welcome to Connect.
I am so sorry to hear about the c-diff on top of an already difficult diagnosis! C-diff can be debilitating. While I don't have much experience with melanoma, I have heard great things about immunotherapy for melanoma. I am hopeful that your mother has a wonderful response. When I was treated with immunotherapy, I got really high fevers, but not much else as far as side effects. How often are her treatments? Does she suffer from pain when eating?
She has only had one treatment and the second one was postponed secondary to weight loss and severe fatigue. She is unable to eat mainly due to nausea which hasn’t been successfully treated.
She doesn’t have pain when swallowing but can feel the food going down due to the restriction.
Would really like some advice on nausea medication. Also she can’t swallow pills so must be in liquid form.
Has she tried Zofran and/or Compazine? Those are the go to meds that I have been on. Zofran melts in the mouth. I had compazine pills, but many meds come in liquid form. I would check with the doctor and pharmacist. Also, I’m not sure where you are located, but medical marijuana was a real lifesaver for me. It really helped with nausea and appetite. There is also a synthetic version that my doctor prescribed before medical marijuana was legal in my state. She has all my empathy though. I had c diff as I started chemo and it was so awful. I’m sorry that she has to deal with it right now. What has she tried already for nausea?
My Dad has just been diagnosed with adenocarcinoma of the esophagus.He just turned 90 in July and on July 8 had terrible pain after eating and that is when everything started.My Dad has a body of a 70 year old.Travels all of the time and is very active.I need help,with finding a Dr.that will not look at him as 90…PLEASE HELP AND ADVISE!!!!!!!!!
Is travel to Mayo Clinic in AZ, FL or MN possible for your dad? Here are the contact numbers mayocl.in/1mtmR63
I'm tagging @loli and @jeffk who can share more about cancer care for head and neck cancer at Mayo Clinic. @alpaca always offers great support and a virtual shoulder to lean on.
What treatment is currently being offered for your dad?
Hello @mimz59 I am sorry to hear that your father has this painful condition. I don't know much about caner of the esophagus as strictly speaking it does not come under head and neck cancer in New Zealand. However, from listening to talks by surgeons over the years I know that there are surgical solutions as well as chemo and radiation options. I believe that doctors will look at your dad's "performance status" not just his age. I really hope so and that you find some good treatment soon. I know what you mean about the relativity of age. I always thought I would be an old lady at 72 but find that I have just as much (if not more) energy as ever. Good luck to you and your dad.
Liked by Colleen Young, Connect Director
I have worked in the medical field all of my life and it HAS to CHANGE.People are living longer!!! They are looking at his age.I have had to push for the few test that we have had done.The Dr.that we saw on Monday,repeated 7 times that my Dad is 90.So sad..But thank you for the support.I had to vent..
Thank you Colleen.Treatment so far,is none.Dr.on Monday,repeated 7 times about my Dad's age(90).My Dad has the body of a 70 year old.Very active and travels all of the time.Should be in Switzerland now,but he had to cancel the trip.I went through Glioblastoma with my Mom and it was fast and hard.I know that this is going to be really hard for him,but at least try something.And get him out of pain.As of yesterday,we have an appointment with another new Dr.at Vanderbilt Ingram Cancer Center.Have my fingers crossed,but if we get no answers,we will travel to Florida.Colleen,he had his first problem with this on July 8.Severe pain in upper part of chest and right side of stomach,after he had eaten.We were going to go to the ER,while getting ready it stopped.I thought it was his gallbladder,which,we have found some stones.I want to know the stage of the cancer.I have asked for a PET scan,maybe with this Dr.They say he was cancer at the top of his esophagus and the worst is the bottom of esophagus.I will take any info,suggestions and support groups.Thanks in advance.
I know very little about this kind of cancer; but your father requires treatment, no matter what his age is. My mother is a hundred, and we would do everything and anything to keep her healthy. I highly recommend Mayo Clinic. My sister has had excellent care for her jaw cancer in Arizona.
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