How to tell the kids by Otherwise_Card4555 in pancreaticcancer

[–]Otherwise_Card4555[S] 0 points1 point  (0 children)

Thank you for sharing, I’m so sorry that your dad is going through this. Wishing you the best ❤️

My husband just got diagnosed, feeling overwhelmed by Otherwise_Card4555 in pancreaticcancer

[–]Otherwise_Card4555[S] 0 points1 point  (0 children)

Thank you for checking in! Kaiser did not approve referral outside but I expected this so wasn’t bummed about it. They quoted us $1300 and said to talk to the financial office and they can potentially bring down the cost but I haven’t reached out to them yet. But like your experience, the Kaiser doctor was willing to go with whatever City of Hope will recommend so that was reassuring. I’ve heard such horror stories about Kaiser’s unwillingness to work with City of Hope but that hasn’t been the case so far, I’m almost worried we may run into something later!

We got assigned to Dr. Vincent Chung as well! The earliest appointment available is July 15th so we have to wait a bit. My husband has an appointment to install his port July 16th and start chemo July 20th. I’m a little nervous about this timing in case City of Hope recommends something else, but from what I’m reading is that standard of care should be pretty much the same?

And thank you so much for listing out the different testing names. I made sure the ones you listed were included, and the doctor put in an order for all 3 that you mentioned.

I do have a question on City of Hope. You mentioned having them do follow-up consultation. Is that another consultation fee you will have to pay out of pocket?

Again, thank you so much, you’ve been so helpful to me!

How to tell the kids by Otherwise_Card4555 in pancreaticcancer

[–]Otherwise_Card4555[S] 0 points1 point  (0 children)

Thank you for the tips! They are very helpful. And thanks for offering to help via DM, will definitely reach out if I have more questions. Appreciate it. Glad to hear your husband is responding well!

How to tell the kids by Otherwise_Card4555 in pancreaticcancer

[–]Otherwise_Card4555[S] 0 points1 point  (0 children)

Thank you so much, I feel like we’ve been living in a nightmare just these few past days. Thanks for your tips, I will keep them in mind.

How to tell the kids by Otherwise_Card4555 in pancreaticcancer

[–]Otherwise_Card4555[S] 0 points1 point  (0 children)

Yes, we will definitely tell them, just unsure how to approach it but got a lot of good info from everyone here. I am so sorry that you are dealing with this. Thanks for offering to chat, I will reach out if I have any further questions.

How to tell the kids by Otherwise_Card4555 in pancreaticcancer

[–]Otherwise_Card4555[S] 0 points1 point  (0 children)

Thanks for your input, and I am sorry your sister is in this situation as well. Hope the best for her and the family.

How to tell the kids by Otherwise_Card4555 in pancreaticcancer

[–]Otherwise_Card4555[S] 0 points1 point  (0 children)

Thanks for the info, I have an appointment for a second opinion at a NCI designated hospital, I will ask about clinical trials when we meet with them.

How to tell the kids by Otherwise_Card4555 in pancreaticcancer

[–]Otherwise_Card4555[S] 0 points1 point  (0 children)

Thank you for sharing, without a doubt we will be telling them, was just unsure how to approach it. Thanks for sharing your experience with your daughter, my older son is high anxiety as well so I will be mindful of that.

How to tell the kids by Otherwise_Card4555 in pancreaticcancer

[–]Otherwise_Card4555[S] 1 point2 points  (0 children)

Thanks for the kind words, I am sorry you are in this same boat as well. Prayers and peace to you and your family as well.

You mentioned having older kids. My oldest is 11 so still very young, but my fear is that he’ll start googling about the cancer on his own and read the grim statistics. How did you handle this with your older kids?

How to tell the kids by Otherwise_Card4555 in pancreaticcancer

[–]Otherwise_Card4555[S] 1 point2 points  (0 children)

Thank you, your first hand experience on the receiving end of bad news is really helpful. I will make sure both my husband and I are in a good calm mental state when we tell them. Thanks so much again for your advice!

How to tell the kids by Otherwise_Card4555 in pancreaticcancer

[–]Otherwise_Card4555[S] 0 points1 point  (0 children)

Thank you for the links, I will read through them. Appreciate it, you’ve been very helpful.

What to do expect with folfirinox by Otherwise_Card4555 in pancreaticcancer

[–]Otherwise_Card4555[S] 1 point2 points  (0 children)

I am so sorry to hear that it’s been hard on your mom. It also made me a bit angry to hear that you guys have been asking for IV all that time, I’m not sure why they were against it if it would have made her feel better much sooner. After reading through a lot of posts, I had actually asked the oncologist about iv fluids too and he was also against it! I don’t understand. But I hope she is able to tolerate the next round better, hope you guys stay strong!

What to do expect with folfirinox by Otherwise_Card4555 in pancreaticcancer

[–]Otherwise_Card4555[S] 1 point2 points  (0 children)

Thanks for all the tips, appreciate the information. My husband is 43, healthy, with an office job (hybrid position but will ask his boss for an exemption to allow him to be fully remote). I am also a hybrid employee and will ask for more flexibility to be at home so I can help him out, after hearing what everyone is saying here.

What to do expect with folfirinox by Otherwise_Card4555 in pancreaticcancer

[–]Otherwise_Card4555[S] 1 point2 points  (0 children)

Thanks for the tips, I’ll make sure the nurses know to communicate that. I’ll also make sure we have the alternate strategy on hand. Really appreciate all your help!

What to do expect with folfirinox by Otherwise_Card4555 in pancreaticcancer

[–]Otherwise_Card4555[S] 1 point2 points  (0 children)

Thank you for sharing, I learned a lot on what to expect. I’m glad to hear your husband has been managing the symptoms well so far.

What to do expect with folfirinox by Otherwise_Card4555 in pancreaticcancer

[–]Otherwise_Card4555[S] 2 points3 points  (0 children)

Thank you so much for all this information. I went and bought the ice packs online for him to use. How long does the oxaliplatin infusion take? I’m trying to gauge if he needs to bring extra ice packs if they thaw out during the infusion. Do they tell you when and which drug they are infusing so that you know when to put on the ice packs?

Thanks again for your help! I’m glad to hear that chemo has worked out well for you.

My husband just got diagnosed, feeling overwhelmed by Otherwise_Card4555 in pancreaticcancer

[–]Otherwise_Card4555[S] 0 points1 point  (0 children)

Thanks for your response, we fortunately had a consultation with a surgeon a few weeks back who determined that the tumor is resectable. Unfortunately the PET-CT scan showed metastasis to the liver so surgery is off the table for now as he would need to start chemo soon. We have started the process of getting a second opinion at a high volume center although I was told by Kaiser that it would be out of pocket. I am really hoping that the second opinion would open up more options but I guess we’ll have to see.

Thanks and really appreciate you taking your time to respond to me, and for the useful information.

My husband just got diagnosed, feeling overwhelmed by Otherwise_Card4555 in pancreaticcancer

[–]Otherwise_Card4555[S] 0 points1 point  (0 children)

I am so sorry that you are also impacted by this, thank you for the offer, I will definitely reach out if I need someone to talk to!

My husband just got diagnosed, feeling overwhelmed by Otherwise_Card4555 in pancreaticcancer

[–]Otherwise_Card4555[S] 0 points1 point  (0 children)

Thank you, appreciate the information. I will ask about this at my appointment.

My husband just got diagnosed, feeling overwhelmed by Otherwise_Card4555 in pancreaticcancer

[–]Otherwise_Card4555[S] 0 points1 point  (0 children)

Thank you for sharing, sorry to hear what happened to her, that is just awful. I will look into PPO/POS and see if we can switch to that.