How do I find out if my dad is getting the right treatment?
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monkeytat….Indeed this is a huge question. Some clinical trials are underway re: adjuvant therapy therefore, the jury is still out as to whether it is beneficial or not. At best it is the opinion of the specialists, and within this group you may encounter varying thoughts.
A second, third, opinion will help you make the decision. Please, make sure to have copies of all medical records including, CT scan, surgery report, physician’s report, etc.
All my best wishes,
MarionYour dad really sounds to have been having a bad time. Has he started on the chemo? Because if he has not recovered well from the whipple it will make it very difficult indeed.
The chemo or not chemo decision is a topic we have often talked about – my dad’s trial (Bilcap) is assessing whether there is benefit in chemo after surgery. But you have to be fairly well to take chemo after a huge operation. Does your dad take plenty of pancreatic enzymes? My dad has to take loads. Is he eating solids yet? Did he develop other complications like leaks after his op? Does he have a counsellor? Some people suffer with depression during this time – can he explain why he is not eating?
My personal feeling would be if he can stand the chemo/radiation then I would want him to have everything they offer as a sort of extra insurance (of course there is no proof yet, but these studies must hopefully be based on some ideas), but he must be well enough to take them.
Best wishes to you and hoping he feels better soon.Thank you for your suggestions. Our biggest concern at this point is just whether or not it seems like the chemo and radiation are excessive, but I like the idea of a second opinion. Hopefully we are on the right path. I’ll keep everyone posted and good luck to each of you!!!
Hi MonkeyTat. Like Gerry said the Whipple is huge. It is the largest surgery to the human body…but not life threatening. Recovery takes months. My husband had an aborted Whipple followed 3 weeks later by the real deal. We were so lucky to have the Surgeon we did and then the follow up with our chosen ONC.
Like Gerry, Teddy’s doctors (5 of them) all said no to chemo. They felt it would not help for what Teddy had. His margins were all clear. To chemo or not is such a personal decision. May I ask how old your dad is and where he is being treated? Listen to your gut, it’s usually right. There is nothing wrong in getting a 2nd opinion even after surgery. We highly recommend it. If Dad is tired and not eating, that is normal after a Whipple. Start him on small meals that are easy to digest. Nothing fried or spicy. If he has trouble digesting, which is also normal then call his ONC for a RX for digestion. Have him walk each day a little bit. Like to the end of the driveway and back. I know I wouldn’t stay anywhere that I didn’t feel that trust as that plays such a big part in treating any illness. You have come to the right place and please keep us posted.Where is your dad being treated?
If it were me, I would have gone orbital early on with what you’ve had to deal with. So very different than my own post op experience. I’ve seen my surgeon four to six times after surgery, met with him for about an hour pre-op, and always a caring, compassionate attitude.
I had a little problem during the hospital stay after surgery, where the liver folks failed to recognize cardiac symptoms (fluid retention, shortness of breath) even after I, on my own, summoned cardiologists to tell them that. I was so mad I could hardly speak by the time I was discharged. The head of the surgical group tried to calm me down in the last hour before I left, but he knew I was really honked off at the liver PA’s. Since, I’ve realized the issue was they were too focused on ‘their’ body part, which excluded anything else going on.
Both the nurse and surgeon’s behaviors are appalling, to say the least. This is why it is critical for every patient with anything serious going on to have an effective advocate.
I would be inclined to seek out additional care opinions from some of the excellent surgeons in the field.
Good luck in guiding your Dad’s care.
Monkeytat
Your Dad has been put through a ringer – first the whipples operation and then the c- diff. As regards the treatment after the operation, adjuvant treatment like chemo is quite normal. I had a whipples but I did not have adjuvant treatment – I hope I never regret it. I’m pleased that your Oncologist is treating your Dad so well but the Surgeon’s behaviour is disappointing – I hope his technical skills compensate for his behaviour. The behaviour of the nurse is appalling.Your Dad is lucky to have you in his corner.
Take care
Gerry
I posted a while back because my dad was so sick after the whipple we thought he might die. He ended up with another week in the hospital with c-dif. Thank heavens he made it through that. From the beginning, signs for CC were missed and then after the whipple we had trouble getting the surgeon to even see or talk to him. When we called the office to tell them my dad wasn’t getting better and he wasn’t eating the nurse practioner told me, “lazy is as lazy does” he may just need to get up. We finally ended up in at the ER and that was how we found out about the c-dif. So you can see why I am checking here to see what others have experienced as far as treatment after. I am just experiencing a little lack of trust in the group of doctors my dad has ended up with.
My dad’s oncologist seems very on top of everything, but I am learning as we go so I am not sure and would feel more comfortable if those with more experience then I felt like this was “normal”.
My dad’s tumour was extrahepatic and spread to two lymph nodes. They believe they got everything and follow up pet scans don’t show anything else, but they have put him on 3 months of chemo, 6 weeks of radiation 5 days a week and then another 3 months of chemo. Does this sound right???
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