Connect
← Return to How can I help my husband face the possibility he may not survive?
Discussion
How can I help my husband face the possibility he may not survive?
Pancreatic Cancer | Last Active: Sep 22, 2022 | Replies (42)Comment receiving replies
Thank you for checking in with me.
After the third chemo treatment (not even the full regimen yet), Mel’s side effects caused him a lot of suffering and more weight loss. Consequently, he has not been willing to have another treatment for a month now. His treatments are supposed to be every other week. His oncologist was on vacation last week and the week before, and he insisted on waiting until he could talk to the doc about some alternative treatments.
A cat scan last Fri. showed significant shrinkage of the tumor, but also some suspicious lesions on his liver. Dr. K doesn’t think it is metastasis, since the tumor has shrunk, so the chemo was working. However, since my husband has waited a month without any chemo, he ordered an MRI for tomorrow to get another look. Another finding on the CT scan is that he has gastroparesis that probably started after the third treatment. That’s when he started having problems feeling over-full and bloated after only a few bites.
Dr. K wanted him to have his 4th treatment yesterday with a reduced dose of Oxilaplatin, but my husband refused. He wants the results from the MRI and treatment for the gastroparesis first.
I think he is very frightened and already sick and tired of feeling sick and tired. Another issue that is probably keeping him stuck right now is analysis paralysis. He has researched tons of different treatment methods and alternative therapies and is now so anxious about not choosing the “perfect” plan for him that he can’t seem to choose anything. He also has an aversion to seeing a counselor. I have been seeing someone once a week to help myself cope and get advice on how to help him.
He has at least started talking about quality of life and not just quantity and that he may not have as much time ahead of him as he hoped for before chemo started.
Replies to "Thank you for checking in with me. After the third chemo treatment (not even the full..."
I am a hyper analytical technologist and force fed myself numerous research papers, pharma white papers, FDA documentation, etc and came to the conclusion that other than the statistics, I wasn't capable of making a qualitative analysis in a field so far outside of my area of expertise. Ultimately, we have had to rely on the oncologist's recommendations with second opinions as needed. The bottom line is that none of the "approved" regimens are successful for all people. Every patient becomes a field study relevant to that patient.
It's not surprising that side effects of folfirinox are severe. So try it without oxalyplaten. There are mutations which platinum drugs are effective against and other times all the platinum provides are bad side effects but no greater tumor reduction than treatment without platinum. My wife had half of her presurgical treatments with platinum and half without. Stopping the platinum didn't reduce the effectiveness. Of course he'll still have to deal with the i-ran-to the-can effects.
Whatever he chooses (and he should choose SOMETHING), get the treatments, track the effects and ask questions. And if you think a change in regimen will be beneficial, push for it. Tell your husband that he's a trial of 1. Appeal to the scientist.
Connect
@sw54 Thank you for this detailed update.
My heart is full of sadness for you and your husband. As you noted in your first post your husband is a scientist. He is used to analyzing data from every possible angle and questioning and second guessing results. Is this correct? I noted too that my husband is similar in that respect. When my husband has stalled decision making and becoming more and more anxious by looking for the "perfect" solution that isn't there I've said to him that by making no decision he has made a decision. But these have not been health care decisions as your husband must make. You know your husband must decide for himself what he wants to do and I know how hard it must be for you to sit on the sidelines. And provide support to him. It's good that you are seeing a counselor whose attention is fully on you, allows you the emotional space you need to deal with all of this, and can provide with you the coping skills you need. It is a frightening time for both of you. I can only wish that your husband could partner with Dr. K in a way that would result in a decision to go forward with the recommended treatment. Maybe at this writing that has happened?
How are you taking care of yourself? Do you like to go for walks? Sit outside and listen to the birds? What would be most soothing to you right now?