Chemo Change from Cisplatin to Cetuximab

Yesterday was supposed to be the 4th treatment with Cisplatin.

Last week Rich had complained about some hearing issues he'd been having.
Immediately he'd been given a audiology test to check his hearing.

He was told that he had high tonal hearing loss, but the rest of his hearing was okay.

Dr. R and Dr A. along with some other specialist reviewed his case along with the results and decided that to continue with Cisplatin would be too risky.  One side effect is hearing loss and apparently the test revealed severe high tonality loss.  The doctors felt that continuing with Cisplatin could cause deafness.

So we are switching to Cetuximab also known as Erbitux today.  So it will be like a 'first' time chemo treatment since the 'cocktail' has been changed.  They will watch him for a while before he is released to go home.

Otherwise, his weight has maintained and he has not lost a lot of it.  We talked about the pain of swallowing and Rich also received medication to ease that.
He is determined to eat and eat and never have to use the PEG or Miss Peggy as he calls her.

This is his goal and he is pretty determined.

Last night he was exhausted and decided that he was not going to eat at all ... maybe just graze a bit.  He is still dealing with feelings of anger or frustration about the major changes in his life and how fatigued he feels.


I think that finding out that he wouldn't immediately bounce back after the treatments ended, has added to his feeling of loss of control.

He figured once everything was done, he'd bounce back to his formal self.

I tried to remind him last night that this was a major illness he was fighting and it would take time for recovery.


At the end of the week there are 15 radiation treatments. After today, there are 3 more chemo treatments.

Small Victories

Yesterday's visit with Radiology was quite surprising.

Rich's weight had only gone down 2 pounds since last Monday.  The Radiology Nurse felt that it was a job well done considering the week before he'd lost 8 pounds in 4 days.

I was shocked myself but very pleased also.  It meant we were doing something right.  
I'd been making shakes out of fruits, yogurt, ice cream, ensure protein & calories booster powder, and milk.  I'd made different blends and he'd been drinking a glassful of it whenever he felt like it.

I'd made home made macaroni and cheese and he'd eaten that in small meals whenever he wished.  Frequent small meals.

Anything that he felt like, he grazed on.  Sometimes it was good food like an apple, and sometimes it was not so great like a Hostess Cupcake.  

His energy level still concerns me.  He is so exhausted that he stays in bed almost all of the time.  I was reading the side effects of Cisplatin and extreme fatigue was one of them.  I'm not sure that staying in bed as many hours as he is, is healthy.  It causes him to be more depressed or is it depression itself?

Hard to know.

But yesterday's visit was a positive one.  Nurse coordinator Jackie from the UW told Rich as long as he could keep his weight up he didn't have to worry about the Jevity.  Of course I got the smug glance from him!  That is okay with me though.  I thought I was doing the right thing, but since we'd kept him from losing more than 2 pounds, I figured it was a victory all the way around.

Rich's daughter had emailed me very early in the morning that she and the kids would be coming to visit in the afternoon.
She thought she'd take Rich for Chemo and Radiation today and let the kids stay with me.

I welcomed the company and the offer.

This is exactly what was needed for a Care Giver break.  I get to do things with the grand children all day and rest a bit.

Steph and I worked most of the afternoon on trying to figure out what meals we could cook up for her Dad so that he could graze all day.

For supper I made a huge pot of spaghetti and some garlic bread.  I cannot say enough how much of a pleasure it was to sit and eat with other folks.

Then Rich ate two small helpings and I felt like jumping up and down. Another mini victory.

Today is Radiation and Chemo day.  Steph is an angel for coming to the farm and staying.  She really saved my sanity.

Small Victories.
One day at a time.

Chemo and Radiation Break

The weekend is time for the body to rest from Chemo and Radiation Therapy.

Tuesday will be the third Chemo treatment of Cisplatin. 
I was reading the side effects from this drug and really it isn't pretty considering the drug is very toxic.

One of the glaring points made for combating side effects was drinking 2 to 3 quarts of water daily.  

Fluids!  I wonder how I can convince 'my patient' to consume this amount daily.
I had to work last night until midnight.  
I hate to say that it was a small relief to be with other people and to be away from the farm for 8 hrs.

Rich called me last night to tell me that he'd eaten 3 more times in very small meals.  But he was too tired to take a can of Jevity.  He said he'd eaten enough during the day.
I can see that it will be a continuing battle for him to get proper nutrition on a daily basis.

The hardest side effect for Rich to deal with from Cisplatin is fatigue.  It is all encompassing for him.  

This raises an interesting issue to think about.
He sleeps all of the time and gets up periodically.  I understand the need to rest especially with the wicked schedule we have with driving nearly two hours just for treatments.

But as he loses weight, which he is doing, and doesn't move around, he will lose muscle tone and become much weaker than he is.


I am at a complete loss as to how to 'fix' that.  
Being a Care Giver is much harder than I thought it ever could be.

This morning a neighbor will be over to put round bales into two of our winter pastures.  It will cut down on my chores for at least a few days.

We've had a break from Radiation that feels too short to me.
The Radiation to the throat is starting to show up with its effects.  His salivary glands are not producing as much saliva.  Items like his beloved daily bagel are no longer possible.
So we have moved towards English Bagels with butter and lots of homemade jelly, along with scrambled eggs in the morning.
Today's menu while I am at work will be:
Mashed potatoes and gravy for snacks.
Yogurt fruit smoothies for any time.
Cottage Cheese, Strawberries, Juice, Eggs, Soup....
Jevity...Jevity...please please take your Jevity!

My biggest issue is getting the time between farm work and our rigorous schedule to make healthy food for him to eat.

Tomorrow the week begins again.

I will be trying to make arrangements to stay overnight in Madison at least one night a week very soon.
Once our animals are moved to summer pasture ... soon...I hope, things won't be so hectic around here.

And I am not ashamed to admit it.  10 days into treatment and I am tired.  We have 5 weeks left.


~~~~~
Addition:
Rich is doing better today, he went outside this morning when a neighbor came over to help me!
He ate two helpings of breakfast, eggs and English Muffins.
Keep your thumbs and fingers crossed today.