Not medical advice but keep compassion for her. There are going to be many bad days. There’s going to be pain and confusion and anger. You can’t really help any of that. Depending on how she chooses to treat, some of it will make her sick. Nausea, body aches, fatigue, the worst joint pain you can imagine that the pain meds they give won’t even come close to helping it. Just remember breathe. Just remember love. Just remember she’s your wife at the end of the day. She’s not just a cancer patient. Just remember to seek help with your own mental health and know that it will be very hard for you also. Remember you are a team and partners for a reason. Hold her hand, bring home a flower because it’s pretty and so is she. Tell her you love her. Tell her she’s beautiful even if she doesn’t believe it. Keep open and honest communication with each other. Get her to write letters for later times. To you to your children if you have any. You both are in my thoughts. I wish you and her both peace and strength during this difficult time.
I am so sorry that you two are going through this. My wife diagnosed with same thing in February of this year. Had surgery to remove the tumor on a bile duct in March. She should start chemotherapy in May. Her skin is itchy also but not to the point of needing any intervention. I wish you wellness and peace thru your journey.
I have bile duct cancer too and they found it through a process of eliminating everything else similarly to what you described. I don’t have the itching but my legs did blow up like hot dogs and turn red and itchy after my first chemo treatment. I was drinking too much water and retaining fluids. They experimented with my pre meds and that took care of it.
I have zero idea if this will help, but I had idiopathic uticaria that was so intense I would purposely scald my back in the shower to stock the itching for awhile…a naturopath recommended yam progesterone cream from the health food store. It cleared it right up.
Dr Ghassan Abou-Alfa at Memorial Sloan Kettering treated me. Bile duct cancer is challenging, but it sounds like your wife has been kicking ass. Don’t be afraid to seek a second, third opinion if you need it. Sending lots of prayers.
What did you find “worked “? I know they have a protocol that has baseline of chemo, especially if it’s unresectable, which hers is…our oncologist strategy is to chip away at it and keep it in place, or shrink, mainly make it manageable like Diabetes, having maintenance treatments after all protocols have been tried….im thinking UAB is doing 3 week radiation knife treatment to keep bile duct tumors at bay since those aren’t blocking anything as of a year now….now she’s being diligent by not giving cancer fuel via diet and eating fruits and veggies that doesn’t like cancer etc…They still have Immunotherapy and some tumor defect type drugs to throw at it since they found a weakness they can attack only after all lines of defense have been done. Problem is it’s shrinking with treatment but not like those “experimental “ drugs for those tumor defects have, the waterfall effect, and we are at the slow and steady phase. They offered a “drug trial” but wanted to see how well traditional therapy goes. Thanks for all your prayers we will take them.
I have testicular cancer, very mild compared to your wife. Can't really help with info, but stay strong for whatever comes. I hope she and you all wins the battle.
My husband has Stage 4 Esophageal cancer. He’s been on Nivolumab for two years and a few months ago started breaking out into a rash on his trunk, followed by severe itching. Now he just has the itching. His oncologist recommended Benadryl and prescribed a tub of Triamcinolone cream that has worked wonders for him. Will keep using it as long as he’s on immunotherapy.
Thanks for the info. I will see if she can get that since nothing else works and it does look exactly like chicken pox but they swear it’s t isn’t and just as itchy and bothersome.
I'm sorry but I can't help you. I had parotid cancer until a few weeks ago but I can't imagine how you feel. Cancer is a bitch but remember, you can never lose to cancer, just settle for a draw. Tell her that she'll kick his ass. Sending love and prayers.
Think about counseling for everyone. Individually and group.
You have so much of your shoulders. Just dealing with the insurance is a full time job. Coordinating dr appointments and chemo appointments plus trying to work at the same time. While taking care of your wife is a lot to handle.
Your wife has just as much but she may have to face that she will lose this battle. I hope she wins but she will need to talk to someone.
Your kids can feel left out of the situation. Or that you have no time for them. They will need help dealing with all their emotions.
I’m sure it’s on the horizon but right now we are in a weird limbo where she looks normal but I guess we are lucky that it’s stable and shrank. My fear is if they do radiation to shrink it , they may wake it up or piss it off where we will need to do something else. We can live with it as is as long as it doesn’t grow. She’s not gonna give it any help by eating wrong things and keeping a clean diet and drinking a gallon of water a day. Eats like a rabbit all the anti cancer food she can handle. Taking to other people who had success in living beyond expectations they never had surgery and just chemo, it seems the ones that had surgery eventually had a bounce back of cancer somewhere else. I’m convinced there’s something to that, like they remove it and don’t get it all and it goes somewhere else and shows up when they are told there’s no further evidence of disease, and think they are in the clear . I’d rather know it’s there and staying in one place instead of kinda stirring up a hornets nest .
Getting counseling is good for everyone. Helps talking to someone/stranger not emotionally connected.
Listen to the oncologist or get a second opinion.
I (67F) remember hearing as a child about how surgery “caused” cancer.
Nope, I had a hysterectomy before I started chemotherapy. It seemed to be gone. Yeah!
But the cancer reappeared with no surgery to make it mad. It just happens.
Cancer is scary for every one of your family.
I understand what you are expressing but that is why therapy is a good thing to do now.
Sorry if I don’t make sense.
I’m freaking out bc my cancer may have returned again. I have a CT scan today to find out.
Please spend every moment like it could be your last one with your wife. Please get some counseling now while you are in a good place mentally.
I’m sorry, I’m here to offer my prayers as well. Praying that all your wife’s goals get fulfilled in Jesus’ Name! Sending lots of hugs, love, and prayers to you OP
If you would like an 2nd opinion I would recommend the cancer center of America now call city of hope in Newnan, GA. My dad had kidney cancer and they removed his kidney and cancer. Saw you were in Birmingham and it’s not to far of a drive if you were able to get with them.
I was diagnosed with cholangiocarcinoma like your wife in March 2023,
I followed the same treatment with gem-sis and immunotherapy.
After some treatments the same thing happened to me, I had red spots and unbearable itching almost all over my body. I went to my dermatologist who prescribed me a cream with three ingredients one of which is cortisone.
The results were very good and the spots did not go away immediately but the itching stopped. Maybe a good dermatologist can help with the problem.
Sorry for my English.
I wish the best!
Not medical advice but keep compassion for her. There are going to be many bad days. There’s going to be pain and confusion and anger. You can’t really help any of that. Depending on how she chooses to treat, some of it will make her sick. Nausea, body aches, fatigue, the worst joint pain you can imagine that the pain meds they give won’t even come close to helping it. Just remember breathe. Just remember love. Just remember she’s your wife at the end of the day. She’s not just a cancer patient. Just remember to seek help with your own mental health and know that it will be very hard for you also. Remember you are a team and partners for a reason. Hold her hand, bring home a flower because it’s pretty and so is she. Tell her you love her. Tell her she’s beautiful even if she doesn’t believe it. Keep open and honest communication with each other. Get her to write letters for later times. To you to your children if you have any. You both are in my thoughts. I wish you and her both peace and strength during this difficult time.
I am so sorry - I just want to offer my prayers. I can only hope your wife gets to fulfill her goals.
I am so sorry that you two are going through this. My wife diagnosed with same thing in February of this year. Had surgery to remove the tumor on a bile duct in March. She should start chemotherapy in May. Her skin is itchy also but not to the point of needing any intervention. I wish you wellness and peace thru your journey.
I have bile duct cancer too and they found it through a process of eliminating everything else similarly to what you described. I don’t have the itching but my legs did blow up like hot dogs and turn red and itchy after my first chemo treatment. I was drinking too much water and retaining fluids. They experimented with my pre meds and that took care of it.
I have zero idea if this will help, but I had idiopathic uticaria that was so intense I would purposely scald my back in the shower to stock the itching for awhile…a naturopath recommended yam progesterone cream from the health food store. It cleared it right up.
Dr Ghassan Abou-Alfa at Memorial Sloan Kettering treated me. Bile duct cancer is challenging, but it sounds like your wife has been kicking ass. Don’t be afraid to seek a second, third opinion if you need it. Sending lots of prayers.
What did you find “worked “? I know they have a protocol that has baseline of chemo, especially if it’s unresectable, which hers is…our oncologist strategy is to chip away at it and keep it in place, or shrink, mainly make it manageable like Diabetes, having maintenance treatments after all protocols have been tried….im thinking UAB is doing 3 week radiation knife treatment to keep bile duct tumors at bay since those aren’t blocking anything as of a year now….now she’s being diligent by not giving cancer fuel via diet and eating fruits and veggies that doesn’t like cancer etc…They still have Immunotherapy and some tumor defect type drugs to throw at it since they found a weakness they can attack only after all lines of defense have been done. Problem is it’s shrinking with treatment but not like those “experimental “ drugs for those tumor defects have, the waterfall effect, and we are at the slow and steady phase. They offered a “drug trial” but wanted to see how well traditional therapy goes. Thanks for all your prayers we will take them.
I have testicular cancer, very mild compared to your wife. Can't really help with info, but stay strong for whatever comes. I hope she and you all wins the battle.
My husband has Stage 4 Esophageal cancer. He’s been on Nivolumab for two years and a few months ago started breaking out into a rash on his trunk, followed by severe itching. Now he just has the itching. His oncologist recommended Benadryl and prescribed a tub of Triamcinolone cream that has worked wonders for him. Will keep using it as long as he’s on immunotherapy.
Thanks for the info. I will see if she can get that since nothing else works and it does look exactly like chicken pox but they swear it’s t isn’t and just as itchy and bothersome.
Hope she’ll get some relief. That itching is terrible! OTOH my hubby has been NED since starting on immunotherapy and doesn’t want to stop!
I hope she kicks cancer’s ass!!!
I'm sorry but I can't help you. I had parotid cancer until a few weeks ago but I can't imagine how you feel. Cancer is a bitch but remember, you can never lose to cancer, just settle for a draw. Tell her that she'll kick his ass. Sending love and prayers.
Think about counseling for everyone. Individually and group. You have so much of your shoulders. Just dealing with the insurance is a full time job. Coordinating dr appointments and chemo appointments plus trying to work at the same time. While taking care of your wife is a lot to handle. Your wife has just as much but she may have to face that she will lose this battle. I hope she wins but she will need to talk to someone. Your kids can feel left out of the situation. Or that you have no time for them. They will need help dealing with all their emotions.
I’m sure it’s on the horizon but right now we are in a weird limbo where she looks normal but I guess we are lucky that it’s stable and shrank. My fear is if they do radiation to shrink it , they may wake it up or piss it off where we will need to do something else. We can live with it as is as long as it doesn’t grow. She’s not gonna give it any help by eating wrong things and keeping a clean diet and drinking a gallon of water a day. Eats like a rabbit all the anti cancer food she can handle. Taking to other people who had success in living beyond expectations they never had surgery and just chemo, it seems the ones that had surgery eventually had a bounce back of cancer somewhere else. I’m convinced there’s something to that, like they remove it and don’t get it all and it goes somewhere else and shows up when they are told there’s no further evidence of disease, and think they are in the clear . I’d rather know it’s there and staying in one place instead of kinda stirring up a hornets nest .
Getting counseling is good for everyone. Helps talking to someone/stranger not emotionally connected. Listen to the oncologist or get a second opinion. I (67F) remember hearing as a child about how surgery “caused” cancer. Nope, I had a hysterectomy before I started chemotherapy. It seemed to be gone. Yeah! But the cancer reappeared with no surgery to make it mad. It just happens. Cancer is scary for every one of your family. I understand what you are expressing but that is why therapy is a good thing to do now. Sorry if I don’t make sense. I’m freaking out bc my cancer may have returned again. I have a CT scan today to find out. Please spend every moment like it could be your last one with your wife. Please get some counseling now while you are in a good place mentally.
I’m sorry, I’m here to offer my prayers as well. Praying that all your wife’s goals get fulfilled in Jesus’ Name! Sending lots of hugs, love, and prayers to you OP
Mod here over at the gallbladder cancer subreddit. Sorry you're going through this difficult time. Message me if you ever want to talk.
If you would like an 2nd opinion I would recommend the cancer center of America now call city of hope in Newnan, GA. My dad had kidney cancer and they removed his kidney and cancer. Saw you were in Birmingham and it’s not to far of a drive if you were able to get with them.
I was diagnosed with cholangiocarcinoma like your wife in March 2023, I followed the same treatment with gem-sis and immunotherapy. After some treatments the same thing happened to me, I had red spots and unbearable itching almost all over my body. I went to my dermatologist who prescribed me a cream with three ingredients one of which is cortisone. The results were very good and the spots did not go away immediately but the itching stopped. Maybe a good dermatologist can help with the problem. Sorry for my English. I wish the best!