On 7/2/2009
puppylover wrote:
I am in a similar situation as Art, who recently posted a message. My husband was diagnosed with stage IV pancreatic cancer with metastasis to liver, lymph nodes on January 1st, 2009. It has now metastasized to the hip bones and vertebrae. He is receiving Gemzar only now, after having to stop Oxaliplatin and Tarceva due to inability to tolerate. His tumor markers continue to elevate...in the millions now. He is miserable with constant belly and back pain, and cannot get comfortable OR sleep.
I have asked his oncologist repeatedly to give me information as to what the natural progression seems to be with this disease, what I should expect? Can we prepare for inhouse care? Should call in Hospice, or WHAT?!
His response is, if he is anxious, we will give him anti-anxiety medication. If he's in pain, we'll give him pain medicine. If he can't sleep, or go to the bathroom, or etc....we'll treat.
Is it the oncologists job to give hope to the patient and keep him in the dark as to really how sick he is? There is a different tone when we enter the clinic now...the look of, "Oh, we're so sorry...pray for a miracle". What the heck does that mean? Is he in the end stages NOW? Can someone out there tell me?! What are the specific questions I can ask the doctor, and should I ask them in front of my husband. I have read responses that encourages us to talk to one another frankly, but I have no solid information to talk about.
Any advice that can be offered will be greatly appreciated.
Roxie
Hi Roxie,
I am very sorry for what your husband and you are going through. I have read this and your other message and would also suggest to you to call in hospice. They can be very good at assisting with pain and supporting you through this and advising what will take place from this point forward. I went through this with my mother earlier this year (she was diagnosed stage IV), and know very well how frustrating it can be to get a straight answer from oncologists! It unfortunate that some oncologists are so lacking in basic bedside manners. What we did at one point, is sit down with my mother's oncologist and senior attending doctor, and had a heart to heart with him. We made it very clear that we wanted him to speak directly with my mother and explain :
1. In very plain terms as to what her condition was at that point and what her outcome will be.
2. What he was going to do for her, or not be able to do for her, including what other treatments he was prepared to provide to palliate her condition.
You both deserve and have the right to know what to expect at this point. If you do not get answers, then I would go through your family doctor and get him or her involved.
Regarding the pain, there are many options for pain control, one of which is the plexus block which is a needle that is inserted into deep tissue. This form of pain management targets back and chest pain and last longer than morphine. This should help your husband to be more comfortable, and be able to get some sleep. I would also suggest having the hospital fit your husband out with an inflatable bed which will also be more comfortable for him than sleeping on a standard hospital mattress as his body will most likely become more sensitive as the pain and swelling increase.
Re. anti-anxiety medication .. It is very common for patients with this disease to become anxious (naturally), depressed and moody. Just a thought but depending on other medication that your husband may be taking, the anti-depressants might make him feel worse?
I wish you all the best in the coming days and strength at this trying time. God bless you both.