Lost the will to live? Or treatment side effect?

flc101

My mother just completed 6 weeks of chemo plus another 33 radiation treatments. She took Tarceva in conjunction with radiation. She's 68, Stage 3A, lost about 17 lbs before treatment (115 -> 98 lbs). She finished on July 30.

She did really well until the last week. On Aug 1, the day after she finished, we had to take her to the emergency room. She had pneumonia and was given IV antibiotics.

A week later she is still in the hospital, practically catatonic, doesn't know where she is, doesn't want to see anyone, and won't eat. Her weight has dropped from 98 to 91 lbs in 10 days. The doctor may want to put in a feeding tube on Monday, but seems reluctant to do so for someone who can (but won't) eat.

We're at a loss as to what to do. Psych consult? Feeding tube? Those of you who've been through it, if you have any advice I would really appreciate it.

Thx,
Lisa

stayingcalm

I haven't been through it but...
Has your mom had a brain MRI done to determine if there are any mets? Also, ask her doctor about the possibility of radiation pneumonitis - the same symptoms as pneumonia. I wish you and your mom much luck,
stayingcalm

flc101

stayingcalm said:

I haven't been through it but...
Has your mom had a brain MRI done to determine if there are any mets? Also, ask her doctor about the possibility of radiation pneumonitis - the same symptoms as pneumonia. I wish you and your mom much luck,
stayingcalm

Stayingcalm (great alias,
Stayingcalm (great alias, btw) -- they think it might be radiation pneumonitis. They treated her with broad spectrum antibiotics for over a week and she's still not responding. They just increased her steroid dosage from 10 mg to 60 mg and are hoping that will get things under control.

She has started eating, thankfully. On Sunday, the doctor said "I'm most concerned about her nutrition". Which is saying a lot when you have cancer and what they think is pneumonia! We have to stay on top of her, but she'll drink Boost and eat some solid food. This is a big turnaround from last week.

We're very concerned because her breathing is very labored and she requires a lot of oxygen (14L). A respiratory therapist is now involved and she has breathing exercises to help increase lung capacity.

They don't believe the cancer has spread. It's too early to tell if she's in remission. I never thought I'd be more concerned about the aftermath of the treatment than the cancer.

Thanks again for your response.

Lisa

Mom@heart

flc101 said:

Stayingcalm (great alias,
Stayingcalm (great alias, btw) -- they think it might be radiation pneumonitis. They treated her with broad spectrum antibiotics for over a week and she's still not responding. They just increased her steroid dosage from 10 mg to 60 mg and are hoping that will get things under control.

She has started eating, thankfully. On Sunday, the doctor said "I'm most concerned about her nutrition". Which is saying a lot when you have cancer and what they think is pneumonia! We have to stay on top of her, but she'll drink Boost and eat some solid food. This is a big turnaround from last week.

We're very concerned because her breathing is very labored and she requires a lot of oxygen (14L). A respiratory therapist is now involved and she has breathing exercises to help increase lung capacity.

They don't believe the cancer has spread. It's too early to tell if she's in remission. I never thought I'd be more concerned about the aftermath of the treatment than the cancer.

Thanks again for your response.

Lisa

It's the pneumonia
I had pneumonia when I was originally diagnosed and I had all of those syptoms - extreme fatigue, apathy, zero apetite, weakness. I was basically forced fed because I didn't want ANYTHING. When I did eventually make myself eat, things got better.

flc101

Mom@heart said:

It's the pneumonia
I had pneumonia when I was originally diagnosed and I had all of those syptoms - extreme fatigue, apathy, zero apetite, weakness. I was basically forced fed because I didn't want ANYTHING. When I did eventually make myself eat, things got better.

After a week in the
After a week in the hospital, she started eating -- albeit with a lot of encouragement. She had pneumonia and has inflammation from radiation (pneumonia is a form of pneumanitis). We started her on a four Boost a day program because that's all we could get in her. She did start eating solid food with a lot of encouragement. Still 95 lbs, though. She was in the hospital for three weeks and was released last Friday. She's very weak, gets breathless after walking across a room, and needs oxygen 24x7. 5L, if that means anything, which is a lot.

Her lungs are so scarred from smoking damage, radiation, and pneumonia that the pulomonologist said her condition is permanent. What really torques me is the pulmonologist said "don't let anyone make you do anything you don't want to do". Huh? She now thinks they sent her home to die. I was not at the appt and have to rely on my dad for information, and he didn't ask for the prognosis. So now she's at home, sitting on the couch, staring into space. Home health care will send PT, CNA, and a nurse on a periodic basis. Appt with a counselor next week, at my insistence (and the family's backing).

Onco doc said her pneumonitis was the worst he's ever seen. I don't know if the combination of the Tarceva and radiation was deadly for her or if she had a 1 in a million reaction. Pneumonitis usually doesn't show up for 3-6 months.

So that's where we are. She did so well through the first 11 weeks of treatment I got lulled into thinking that everything would be OK. Didn't dream of this in a million years.

stayingcalm

flc101 said:

After a week in the
After a week in the hospital, she started eating -- albeit with a lot of encouragement. She had pneumonia and has inflammation from radiation (pneumonia is a form of pneumanitis). We started her on a four Boost a day program because that's all we could get in her. She did start eating solid food with a lot of encouragement. Still 95 lbs, though. She was in the hospital for three weeks and was released last Friday. She's very weak, gets breathless after walking across a room, and needs oxygen 24x7. 5L, if that means anything, which is a lot.

Her lungs are so scarred from smoking damage, radiation, and pneumonia that the pulomonologist said her condition is permanent. What really torques me is the pulmonologist said "don't let anyone make you do anything you don't want to do". Huh? She now thinks they sent her home to die. I was not at the appt and have to rely on my dad for information, and he didn't ask for the prognosis. So now she's at home, sitting on the couch, staring into space. Home health care will send PT, CNA, and a nurse on a periodic basis. Appt with a counselor next week, at my insistence (and the family's backing).

Onco doc said her pneumonitis was the worst he's ever seen. I don't know if the combination of the Tarceva and radiation was deadly for her or if she had a 1 in a million reaction. Pneumonitis usually doesn't show up for 3-6 months.

So that's where we are. She did so well through the first 11 weeks of treatment I got lulled into thinking that everything would be OK. Didn't dream of this in a million years.

Having a diagnosis is half the battle
flc101,
I'm glad at least that you now have a diagnosis and your mom is able to be home. Is she on any inhalers or other breathing medicines, like Spiriva and Advair? It's a really frightening feeling to have a breathing problem. I know I couldn't do without my inhalers. Oxygen is great, but it doesn't dilate the bronchial tubes and allow free breathing. I really hope it all gets better from here,
Deb

flc101

stayingcalm said:

Having a diagnosis is half the battle
flc101,
I'm glad at least that you now have a diagnosis and your mom is able to be home. Is she on any inhalers or other breathing medicines, like Spiriva and Advair? It's a really frightening feeling to have a breathing problem. I know I couldn't do without my inhalers. Oxygen is great, but it doesn't dilate the bronchial tubes and allow free breathing. I really hope it all gets better from here,
Deb

Lots of drugs involved
Deb,

She's taking prednisone (60 mg), symbicort, and spiriva. Plus nexium to counteract the prednisone side effect. She has albuterol for emergencies, which thankfully hasn't been used.

I found the following on Tarceva side effects. ILD is rare but possible.

http://medicineworld.org/cancer/lead/tarceva-approved.html

Lisa

stayingcalm

flc101 said:

Lots of drugs involved
Deb,

She's taking prednisone (60 mg), symbicort, and spiriva. Plus nexium to counteract the prednisone side effect. She has albuterol for emergencies, which thankfully hasn't been used.

I found the following on Tarceva side effects. ILD is rare but possible.

http://medicineworld.org/cancer/lead/tarceva-approved.html

Lisa

ILD
Hi, Lisa,
Are the doctors suggesting this might be ILD, and not pneumonia or Pneumonitis?
(Tarceva has been good to me, put me in remission and then NED. But I've been coughing a lot lately, this worries me!
stayingcalm

flc101

stayingcalm said:

ILD
Hi, Lisa,
Are the doctors suggesting this might be ILD, and not pneumonia or Pneumonitis?
(Tarceva has been good to me, put me in remission and then NED. But I've been coughing a lot lately, this worries me!
stayingcalm

Deb, I think it's a
Deb, I think it's a combination of pneumonia + pneumonitis from radiation and chemo + prior lung damage from smoking (emphysema). The docs are saying it's her prior lung damage from emphysema, but they're not going to say it was from something they did. The incidence of ILD from Tarceva is < 1%, so you shouldn't worry -- particularly since it's proved such a miracle drug for you.

I wish I had known more about the lung damage before all of this, but I doubt we would have made a different decision had we known. She smoked for 50 years and only quit when forced to after her cancer diagnosis.

Lisa

zinniemay

flc101 said:

Deb, I think it's a
Deb, I think it's a combination of pneumonia + pneumonitis from radiation and chemo + prior lung damage from smoking (emphysema). The docs are saying it's her prior lung damage from emphysema, but they're not going to say it was from something they did. The incidence of ILD from Tarceva is < 1%, so you shouldn't worry -- particularly since it's proved such a miracle drug for you.

I wish I had known more about the lung damage before all of this, but I doubt we would have made a different decision had we known. She smoked for 50 years and only quit when forced to after her cancer diagnosis.

Lisa

You mom
I hope your mom is doing better

flc101

zinniemay said:

You mom
I hope your mom is doing better

Update
Update on my mother...

There is no sign of cancer, but she does have fibrosis as a result of radiation. I think it was the combo of tarceva and radiation, but we'll never know for sure. She also had emphysema, something no one told us when this process started. Given her smoking history I should have known to ask, but I didn't factor existing lung damage into the equation.

She's at home now and they're treating her with high doses of steroids. She's on oxygen 24x7. She can't walk more that 10-15 feet without being winded. But she's alive, still has her sense of humor, and is able to enjoy her friends, kids, and grandkids.

I've turned this over in my head a million times, but I don't think we would have made different decisions given what we knew at the time. I do wish that we had gotten a second opinion. I advocated for one but for the wrong reason -- I thought they should have considered surgery more seriously. I see now why they didn't. I'm still advocating for a 2nd opinion on the lung damage, but my dad is pretty resistent. That generation has a different relationship to the medical profession than mine does, so he just doesn't see the need.