This is my first post so I hope I am doing this correctly. I need some advice. My father is 4 weeks post treatment(35 radiation and 8 Erbitux) (sorry, I don't know all the acronyms) He had a pegtube placed but was bound and determined not to use it. Taste went within first 10 treatments and he relied on Ensure to get him through. Was able to maintain weight within of 10 lbs of start weight all through treatment. As the last week of treatment started, my brother and I noticed his reserves were starting to fail him. I asked the doctor about placing him the hospital for a few nights so we could get him into a physical therapy inpatient setting. Oncologist did so but insisted on only using feeding tube. He was transferred to rehab 5 days later. Felt generally miserable for about first 5 days of being there. Some ups(wound care created a gentamycin(sp?) and lidocaine cream to speed facial burn healing. 4 weeks later almost everything is completely healed and looking great) and some downs( not enough free water was given for several days until I did some research and found usual rule of thumb is 35 ml per klgram of bodyweight. They kept saying his altered mental state was due to his minor dementia and we should be prepared to accept this is how he would be. Finally transferred to hospital. Some ups( got all of his medications straightened out and is receiving proper amount of free water) and some downs ( he has pnuemonia in the right lower lung that is not responding to antibiotics. Did a modified barium swallow that confirmed NO aspiration but the pulmonologist says he is "micro aspirating". Have now had a ct to confirm. We are waiting on the results. His swallowing was never really an issue through treatment only after it was complete. Took all meds by mouth, etc. First week or two post treatment the pegtube was a blessing as he felt miserable. All throat pain has about gone. Sorry for such a long drawnout post but has anyone heard of microaspiration pnuemonia? Really becoming frustrated. Thanks so much

Welcome to OCF!

As a caregiver, taking care of a parent can be a very difficult job which is often frustrating and thankless. You have come to the right place to get some help with your father. He is lucky to have you in his corner!

Your father is only just beginning his recovery period. At only 4 weeks post rads, he still probably feels lousy and is fatigued and weak. His intake must be a minimum of 2500 calories and 48 oz of water every single day for at least the next year. Some members will say 60 oz of water is the minimum.

What your father has been thru will take a long time to get over. Radiation keeps working for a few weeks even after treatments end. It takes one month of recovery for every week of radiation treatments. A complete recovery can take every bit of 2 years. Thats not to say at 3 or 4 months after rads he wont be doing better, what I mean is that he will still notice improvements in his sense of taste and energy levels all the way thru the 2 year mark. Most patients are doing remarkably better anywhere from 3-6 months after rads ends. Every patient is different and will recover at their own pace, some faster than others. Age can play a part in the timeline too.

Aspiration pneumonia is fairly common with OC patients. I have not heard of mico-aspiration before but it certainly sounds very possible for OC patients. The micro-aspiration could be the cause of the pneumonia and why its not responding to meds.

Hang in there, in time your father will do better and feel better. Rads can be so hard on a patient. I spent many nights in the hospital for malnutrition and dehydration when I went thru it. I learned to focus on what is controllable which is the calorie and water intake and push to meet the daily minimums and then exceed them. Thats the way to get well and feel better.

Best wishes with everything.

Hi Betsy -
You probably got the best first response you ever could here at OCF. Christine has been through a lot and helped a lot of others get through their problems.

I don't know anywhere as much as she or others know, but I do know how much of a help the family has been for me since I was diagnosed. It is just as much a help to caregivers as to patients. When you need info or just a sympathetic ear we have those in abundance.

From your first post I can tell you've really prepared yourself as your fathers advocate. I wish I had one like you.

welcome Betsy, you will find some peace here.

Tony

Thanks so much. My dad is healing beautifully after treatment. His fatigue has already decreased just to be drug down again due to the pneumonia. I honestly think the pneumonia is due to lack of movement. His history is if he is hospitalized for more than 48-72 hours, he develops it.

Although he has had a bit of a rough time of it, his stamina is incredible. He believes his taste may be already coming back.

I am having a hard time trying to convince the hospital staff to increase the nutrition intake as they can only go by what is ordered by the doctor.

I do believe we are headed in the right direction but it seems it is two steps forward and one step back. It WILL get better.

I am glad to hear that you have not heard of micro aspiration. From everything I can find, it only involves vent dependent or trach patients. I truly feel this doctor is reaching. I was led to believe the modified barium swallow would either confirm or deny the aspiration. Since it showed none, I thought we would be able to take this off the table as a possibility, just to have it brought back less than 15 hours later. I am hoping the CT will find some type of conclusion of what may be impeding the resolution of the pneumonia.

Other than these weird things that happened AFTER treatment ended, my dad has sailed through this. Well, he has put the front on that he has sailed through it. He has actually weathered worse in his life and has learned to deal with pain in an amazing way. He is a pretty awesome guy.

Thanks again for all the input. I will keep you posted on his recovery.

Betsy

Hi Betsy:
It sounds like you have a great man for a father, one who suffers in silence, but prevails regardless. Apparently that has rubbed off on you too as from your writing you obviously have a lot of character and your dedication to your father is obvious.

On the subject of weird medical things happening, I have a weird one too. A throat infection before radiation that looked like strep turns out not be strep. They say they can't see anything going on in my throat, but my throat knows something is going on cause it hurts like @#$% (profanity intended) all the time. It's so frustrating that they can't find anything wrong and I just have to hurt. of course it will get worse as the radiation proceeds. But, in the end I just have to grin and bear it. So I know a little of what you and father is going through.

You are a great caregiver, like I said before I wish I had one like you. You don't have a sister do you (LOL). As time goes on you might be a great source of strength for other caregivers on the forum who are being stressed to their wits end. Just hearing a positive word from someone else who is traveling the same road often helps so much.

take care, stay strong, when you're down ... come here.

Tony

It irritates me when they think they know the patient better than the family. You need a sit down with the dr. Make your requests (up as much as possible - more nutrition) my father was not a cancer patient but a stroke patient. They had him in bed 20 hours a day, he ended up with pneumonia as well. This along with general negligence killed him. You need to restate his history of getting pneumonia when hospitalized for extended periods. Micro aspiration could relate to small amounts going down when he's taking in food. I argued my brains out to have his diet changed they fought me at every turn- they kept saying he was aspirating - he was in bed for extended periods that was a major contributing factor. Good luck and push