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Geez, that is awful. If they give you grief, I would call patient relations from the hospital, they can help be your advocate. I would explain to them there appears to be an error on your husband’s scan, perhaps was mixed up with another patients.
The only reason I can think why he should not get rescanned is the radiation exposure form the CT. I would request he get a MRI so he is not exposed to the radiation again. I would also suggest that the hospital pay for the MRI. This is THEIR mistake, they should pay, they should not even bill your insurance.
I would call patient relations.Let us know what happens.
Susie
Pam,
Maybe it is a cumulative effect. Lauren has been on chemo for a while and I would think the longer you are on it, the harder it is on you.
If you really do think it is the Xeloda, maybe talk to the onc about switching her back to 5fu? If I remember correctly, I think your Dr prescribed Xeloda instead of 5fu to be easier on you guys so you don’t have to do as much driving. If it is not easier on Lauren, then maybe you could switch back?
How is her Hemoglobin/Hematocrit? If she is anemic that could contribute to fatigue as well.Take care.
Susie
Kris,
Glad to hear it is going well. I’m sure they talked to you about this but make sure you take care of your skin. I was told to use aquaphor.
I did not get a radiation burn, but my skin got a little tan. I used the cream everyday after treatment. How is your throat feeling?
Hang in there, you will be done before you know it.Marion, 50/50 is a movie about a young man in his 20’s getting cancer and how he deals with it. It is sad, but with some funny parts.
Take care everyone!
Susie
I am not sure if Neupogen can cause your Alk Phos to rise. Alk Phos can rise with bone disorders and liver disease. I would ask your oncologist why they think your alk phos went up, it may be related to the chemo or perhaps your underlying condition, but I would talk to your dr about it. Maybe because the neupogen messes with your bone marrow, it is related, but I’m not sure.
73 is way too high of a white count. I hope they adjusted your neupogen dose? I had a white count of 50 when I was on Neupogen and had such bad bone pain.
take care!
Susie
Hi. I’m 32 and was diagnosed with intrahepatic CC about a year ago. I had a liver resection, which removed the tumor and then had chemo and radiation.
My surgeon told me intrahepatic CC is rising among young people and they don’t know why. I didn’t have any risk factors. I don’t have hepatitis, don’t smoke, and I am as skinny as can be. I did drink alcohol sometimes, but just a few times a month. I wish I knew why I got it.I am so very sorry for your loss. She was so very young and I’m sure you miss her terribly.
Thanks for sharing your story.
Susie
Kris,
I had bad throat pain, like a lump in my throat when swallowing during radiation. I had bad reflux and probably some esophagitis. Maybe ask about going on a proton pump inhibitor. Keep us posted. Oh, how I hated radiation towards the end. But remember, if you do have side effects, they will get better after treatment ends.
I am home along tonight and watched 50/50. Not my smartest decision.
Take care!
Susie
Lisa,
I’m very glad you found the site and find it to be helpful. It sure does sound like you’re getting a lot of conflicting information. I would say a second opinion is in order.
Best of luck to you both and please keep us updated on your husband!Susie
That’s great, Eli!! Sorry about the constipation, but hopefully it is resolving.
Very happy for you both and I hope your wife is feeling better.Take care,
Susie
Pam.
I love the blog! Those dogs are so stinking cute.
I’m sorry to hear Lauren is getting sensitive to cold sensations. Hopefully, it will not last long. Lauren has been handling chemo so well so far, I’m hopeful it will continue with her new regimen.
Keep us posted.Susie
Hi. I am 32. I had intrahepatic cholangiocarcinoma, meaning it grew in my liver. I did receive surgery without knowing it was cancer.
I had abdominal pain and a large mass was found. I sent my records to a surgeon I used to work with and he said it doesn’t matter if it’s cancer or not, it needs to come out, so that’s what we did.
I did not have a whipple, I had a liver resection.
They are both big surgeries. Like everyone else has said make sure he is going to an experienced surgeon.
If he does have cholangiocarcinoma, as you mentioned, surgery is the only chance for a cure and there is only a very small percentage of patients who present early enough that surgery is an option. So, if he is a surgical candidate, I would probably go for it.
Make sure the surgeon explains the risks so you know exactly what to expect. It is a big surgery and his age will probable make his recovery a little more difficult, especially if he has underlying health conditions.
As far as IV pain meds go, he will need some after surgery. How much varies from patient to patient and when he starts tolerating a diet he can be switched to by mouth.
Do you remember what pain med he received in the past? Maybe if he switched to a different one it would be better on him.
I would explain this concern to the surgeon and the anesthesiologist to see what his pain management options are. I would ask if IV Toradol is an option. It is not a narcotic it is a NSAID. I believe it can be hard on the kidneys so there is a maximum dose you can receive. It is often given in combination with iv narcotics to lessen the amount of narcotics needed. Also ask if a lidocaine ball can be used. It is an external ball the administers a numbing medication.
There are lots of options. Ask about them.Best of luck and please keep us posted!
Susie
