Can You Please Help Me?

TomM1956728 · February 2014

Hello,

I wanted to ask for your kind help.

My mother is 88 years old and has esophageal cancer. When she was initially diagnosed over 3 years ago, the doctors mentioned that the cancer had spread outside of the esophagus near her lungs (not on the lungs but close by) and in her chest.

She received 3 weeks of radiation to improve her swallowing and almost 3 years of chemo.

After each of the last three chemo sessions she had heart problems so the doctor decided that she could no longer get any more chemo.

Since June 2013, she has instead been taking a pill called Tarceva.

The PET/CT Scan in September 2013 showed that the cancer near her lungs and chest area had decreased but that the cancer in the esophagus had increased.

A PET/CT Scan done in mid-December 2013, showed that her cancer had not progressed and was stable.

In late November 2013, she suffered a hip fracture and had surgery on her leg and entered a Nursing Home/Rehab facility on December 1, 2013.

Since entering the Nursing Home, she eats almost nothing.

In fact, not having an appetite and eating very, very, very little has been her main problem over the past year.

But since going to the Nursing home, she eats only an egg for breakfast, nothing for lunch and less than half a cup of soup for dinner. This has been her diet over the past 2 months.

Over the last month in the Nursing home, she also has had persistent diarrhea. She had diarrhea for around 3 days and then it stopped for 2 days, the diarrhea came back again for about another 3 days and went away for 2 days, started again for 3 days and stopped for 2 days, etc. This despite taking anti-diarrhea medicine all the time.

She was also vomiting about once a week (about twice a day).

These developments made her so weak that it was hard for her to even get out of bed.

They eventually did blood tests and took a stool sample and determined that she did not have an infection so they could not understand why she was having diarrhea.

About 2 weeks ago, the diarrhea became so severe and had weakened her so much that she was hospitalized for 2 days.

At the hospital, the tests only showed that she had a urinary tract infection, but the tests couldn’t determine why she was having diarrhea.

She was given antibiotics for 2 days, and since her diarrhea had stopped, they discharged her to the nursing home, and told her to take the antibiotics for her urinary tract infection orally for another 10 days.

However, a few days later, while at the nursing home, despite eating nothing, she started to vomit uncontrollably the entire day.

She was taken to the hospital where the blood tests showed that an infection had entered her blood and had spread throughout her body. She also had pneumonia as a result of the infection. (I think the term they used is “sepsis”).

She was in ICU for about 5 days and treated with 2 strong antibiotics which helped reduce the infection.

She has now been transferred out of the ICU unit to a different section of the hospital where she is continuing to receive antibiotics.

Over the past week in the hospital, she ate nothing except for yesterday when she ate some yogurt and a bottle of Ensure.

She finally had a bowel movement last night and it was watery stools so they are going to take a stool sample since it appears she may once again have diarrhea.

Since her infection is better and she is supposedly becoming medically stable, the doctors want to discharge her soon to the Nursing Home where she can continue to receive antibiotics and, they claim, physical therapy.

However, she is extremely, extremely weak, sleeps most of the day, and can’t get out of bed due to her weakness, so I don’t know how she will be able to do any physical therapy.

I think the source of all her problems is the fact that she has been eating very, very, very little over the past year, and next to nothing over the past 2 months at the Nursing Home.

This combined with the persistent diarrhea she’s had over the past month has made her extremely weak so that she easily gets infections that spiral out of control.

I’ve asked the doctors if they can give her a feeding tube.

However, the doctors stress that her cancer is incurable and that a feeding tube would cause complications.

Since the PET/CT Scans show that the Tarceva medicine has been effective in controlling the cancer, I think that with sufficient and proper nutrition, she can improve.

Could a feeding tube could help my mother?

Is there anything that can be done for her that would help?

As I am truly worried and desperate, I would deeply, deeply appreciate hearing any thoughts, ideas, suggestion or advice you may have.

Thank you very much for your kind attention, time and help!!!

Tom

P.S. – I just noticed that on her CT Scan Findings of December 18,2013, it says the following about the area near her lungs: “Multiple other areas of lesser extent groundglass attenuation in the right upper lobe at the distal airways are present. These are nonspecific, but likely represent inflammatory or infectious in etiology and may represent chronic aspiration…Clinical correlation and attention on follow up is advised.”

Does anyone know what this means?

When she was having diarrhea and vomiting in the nursing home over the past month, I called the oncologist several times for help but he kept telling me that since the blood tests showed no infection, nothing could be done for her. However, may be the infection noted in the CT Scan Findings had something to do with her condition?

paul61 · February 2014

Some thoughts based on experience

Tom,

I am so sorry to hear of your mother’s difficulties. Are you aware that one of the common side effects of Tarceva is diarrhea? http://www.tarceva.com/patient/taking-tarceva/side-effects

In addition, a common issue with the long term administration of broad spectrum antibiotics is that they destroy the “helpful” bacteria in our intestinal tract that helps digest food and can also result in diarrhea. It sounds like your mom needs some aggressive nutritional intervention combined with medication to reduce to motility of her digestive tract to reduce her diarrhea. Perhaps a diet containing mild foods such as bananas, white rice, oatmeal, applesauce, dry toast, crackers, plain pasta, eggs, poultry, and baked potato; along with a probiotic, may help address her diarrhea. Many of us with digestive tracts compromised by chemotherapy have found that Ensure can also cause diarrhea. I would suggest replacing the Ensure with a smoothie made from yogurt, banana, protein powder, and chia seeds. Chia seeds absorb many times their weight in water and will help provide some bulk in her digestive tract.

I can understand why your surgeon would have concerns about placing a feeding tube in her current fragile condition. It sounds like any invasive procedure could place your mother at risk.

As relates to the granular “infection related” image on her CT scan; potentially related to aspiration; most of us who have had esophageal cancer have a life time history of acid reflux. Aspiration is something we live with from time to time. Many of us had a hiatal hernia that compromises the upper esophageal sphincter which can lead to reflux; and if asleep; aspiration.

It really sounds like your mom needs some medical intervention that addresses her nutritional needs through intravenous therapy, while at the same time rebuilding her natural digestive process. Perhaps they could reduce the dosage of the Tarceva temporarily to see if that is the culprit in the diarrhea? While I was having chemotherapy one of the medications caused diarrhea. I took Lomotil 3 times a day to counteract the side effect. So perhaps if Tarceva is the issue they can address the side effect medically.

I am so sorry for your mom, I know how miserable she must be. If she is transferred back to the nursing home I think someone needs to work with their staff to insure they define a management program that takes her special needs into account. I know you must hate the helpless feeling of wanting to do something to help but not being sure what to do.

I am not a medical professional, my suggestions are based on personal experience, but I am hoping their might be some thoughts in there that may give your mom some relief.

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0 Stage IIB - Ivor Lewis Surgery 12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Four Year Survivor

TomM1956728 · February 2014

paul61 said:
Some thoughts based on experience
Tom,

I am so sorry to hear of your mother’s difficulties. Are you aware that one of the common side effects of Tarceva is diarrhea? http://www.tarceva.com/patient/taking-tarceva/side-effects

In addition, a common issue with the long term administration of broad spectrum antibiotics is that they destroy the “helpful” bacteria in our intestinal tract that helps digest food and can also result in diarrhea. It sounds like your mom needs some aggressive nutritional intervention combined with medication to reduce to motility of her digestive tract to reduce her diarrhea. Perhaps a diet containing mild foods such as bananas, white rice, oatmeal, applesauce, dry toast, crackers, plain pasta, eggs, poultry, and baked potato; along with a probiotic, may help address her diarrhea. Many of us with digestive tracts compromised by chemotherapy have found that Ensure can also cause diarrhea. I would suggest replacing the Ensure with a smoothie made from yogurt, banana, protein powder, and chia seeds. Chia seeds absorb many times their weight in water and will help provide some bulk in her digestive tract.

I can understand why your surgeon would have concerns about placing a feeding tube in her current fragile condition. It sounds like any invasive procedure could place your mother at risk.

As relates to the granular “infection related” image on her CT scan; potentially related to aspiration; most of us who have had esophageal cancer have a life time history of acid reflux. Aspiration is something we live with from time to time. Many of us had a hiatal hernia that compromises the upper esophageal sphincter which can lead to reflux; and if asleep; aspiration.

It really sounds like your mom needs some medical intervention that addresses her nutritional needs through intravenous therapy, while at the same time rebuilding her natural digestive process. Perhaps they could reduce the dosage of the Tarceva temporarily to see if that is the culprit in the diarrhea? While I was having chemotherapy one of the medications caused diarrhea. I took Lomotil 3 times a day to counteract the side effect. So perhaps if Tarceva is the issue they can address the side effect medically.

I am so sorry for your mom, I know how miserable she must be. If she is transferred back to the nursing home I think someone needs to work with their staff to insure they define a management program that takes her special needs into account. I know you must hate the helpless feeling of wanting to do something to help but not being sure what to do.

I am not a medical professional, my suggestions are based on personal experience, but I am hoping their might be some thoughts in there that may give your mom some relief.

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0 Stage IIB - Ivor Lewis Surgery 12/3/2009 - Post Surgery Chemotherapy 2/2009 – 6/2009

Cisplatin, Epirubicin, 5 FU - Four Year Survivor

Thank you

Thank you so much Paul for your kind advice and helpful thoughts.

Eating mild foods and taking a probiotic are great suggestions.

I didn’t know what Chia seeds are but I will ask my mother to try eating the seeds.

Unfortunately, the doctor doesn’t really care about things such as nutrition. He only cares about chemotherapy, radiation, etc. so your advice is greatly appreciated.

My mother stopped taking Tarceva for the past 3 weeks.

During the first 7 months she was taking Tarceva, she would have diarrhea only occasionally and she was able to control it with Immodium.

When the diarrhea started to get worse over the last 3 months, she started to regularly take Lomitol but it was unable to control her diarrhea. Even when she stopped taking Tarceva for several days in a row, the diarrhea would not stop.

Unlike what we were initially told, the hospital eventually said that the infection had not gone “septic,” and that she had a kidney and lung infection. However, despite doing blood and urine cultures, the hospital was unable to determine the bug that caused the problem.

She is now in the nursing home and her body is really swollen, (hands and arms). The hospital told us that the swelling is due to the fact that she has very little protein and that causes the blood vessels to leak into the tissues.

She still eats very, very little but at least she doesn’t vomit the little bit she eats and the diarrhea has stopped. She is asleep most of the time.

Thank you once again Paul for taking the time to read and respond to my post and for your helpful advice. I greatly appreciate your kind assistance. Thank you!

Tom

mardigras · February 2014

Diarrhea

Hello Tom,

I am truely sorry to hear about how poorly your Mother is.

Paul, as usual has hit the nail on the head and I agree totally will everything he has said. Unfortunately, diarrhea is the bain of the life of an esophageal cancer sufferer. The treatment causes it, and after an op the altered geography of the body causes it.

Having said that, the diet that Paul describes is perfect and chia seeds are really good. If there is some way that you could get the nursing home to work with you on Mum's diet, I too believe that Mum would benefit.

Prayers and hugs.

Marci x

ptom · March 2014

TomM1956728 said:
Thank you

Thank you so much Paul for your kind advice and helpful thoughts.

Eating mild foods and taking a probiotic are great suggestions.

I didn’t know what Chia seeds are but I will ask my mother to try eating the seeds.

Unfortunately, the doctor doesn’t really care about things such as nutrition. He only cares about chemotherapy, radiation, etc. so your advice is greatly appreciated.

My mother stopped taking Tarceva for the past 3 weeks.

During the first 7 months she was taking Tarceva, she would have diarrhea only occasionally and she was able to control it with Immodium.

When the diarrhea started to get worse over the last 3 months, she started to regularly take Lomitol but it was unable to control her diarrhea. Even when she stopped taking Tarceva for several days in a row, the diarrhea would not stop.

Unlike what we were initially told, the hospital eventually said that the infection had not gone “septic,” and that she had a kidney and lung infection. However, despite doing blood and urine cultures, the hospital was unable to determine the bug that caused the problem.

She is now in the nursing home and her body is really swollen, (hands and arms). The hospital told us that the swelling is due to the fact that she has very little protein and that causes the blood vessels to leak into the tissues.

She still eats very, very little but at least she doesn’t vomit the little bit she eats and the diarrhea has stopped. She is asleep most of the time.

Thank you once again Paul for taking the time to read and respond to my post and for your helpful advice. I greatly appreciate your kind assistance. Thank you!

Tom

Perhaps Nursing Home is suspect

Tom,

My mother suffered from mid stage Alzheimer's. While in the nursing home for physical rehabilitation I discovered they were giving her quite a few drugs that I hadn't authorized. Drugs that can be considered "chemical restraints". Drugs that made my mother so loopy she couldn't participate in her therapy. Many of the side effects she had look just like the side effects you listed. Please contact any and all physician who had contact with your mother and demand a complete list of all medications she is taking. Do your due diligence. You may be surprised with what you find.

Good luck.

ptom

mardigras · May 2014

Hello Tom

Hi Tom,

I'm so sorry that your Mum is so poorly.

If I were in your situation, I would contact James Lukeditch personally and ask for his advice.

It may be possible to ask for a telephone appointment and he would be able to advise you of the best course of action.

The advice Paul has given you is really sound. He has a wealth of knowledge on the subject if EC.

The other thing to consider is the nursing home. My Mother had dementia, and from the time she went into the nursing home, she started to lose weight. The nurses don't seem to have the time to give people very much assistance and encouragement with eating and the fact that most people yearn to be at home, doesn't help with appetite. It seems to me that your Mother needs a bit more attention than she is getting and it would not hurt to have your say on that front. We all feel that we don't want to cause trouble, but it sounds to me as if she needs some TLC , and perhaos you need to dig your heels in to get it. Worth a try perhaps.

I hope she will be feeling a bit better soon.

Love, hugs and prayers,

Marci

Can You Please Help Me?

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