Chemo and Radiation... What to Expect

Susan_E

My dad (age 75) was diagnosed with Stage IVb EC last November. Because of the Medicare HMO plan he was on, things have been moving at a very slow pace. Several road blocks have also been put in our way in the form of request denials and a laughable number of oncologists within network. There has been no treatment, though my dad has been eager to start treatment.

The insurance company sent someone over about a month after his diagnosis to discuss end of life care while we were still fighting for them to approve a second opinion. With this in mind, I suppose I can't accuse them of doing nothing.

Because of Medicare's open enrollment period, we were able to switch my dad's insurance plan to a PPO which will dramatically change his level of care. He's now seeing an oncologist we were referred to by a thoracic surgeon at Cedars Sinai in Los Angeles. We feel we're finally on the right path with the right team in place.

The new oncologist has recommended aggressive chemotherapy and radiation. The radiation will be five days a week for five weeks and chemo will be once a week. When I asked the doctor if this would knock my dad flat on his #$%, the doctor said the effects can vary from patient to patient. I should have followed-up by asking what side effects we should expect. Unfortunately, I didn't.

I would truly appreciate feedback from those of you who have undergone chemo or chemo/radiation (or have seen a friend of loved one through treatment).

My dad has been kicked down but certainly hasn't been kicked out. He's a little weak and tired (physically and emotionally). Now that the HMO doesn't have him on a leash, he finally feels a little better about things.

cfight

Hi Susan,
My father (age 64)
Hi Susan,

My father (age 64) was diagnosed with Stage IV EC last December. The biggest side effect from chemo and radiation was fatigue. My mom was very proactive in making sure he received fluids in between treatments which did help his energy levels. My father was fortunate because he was able to keep his appetite during treatments. The good news is that there's a lot of treatments available to address side effects from chemo and radiation. I'm so sorry to hear about your father's recent diagnosis. It was scary for me and my family in the beginning, but once he started treatments, we felt a lot better. Sounds like you're on that track which is great. I'll send positive thoughts your way.

Carolyn

BMGky

The medicines offered to control the side effects really help. However, my husband developed a throat infection. Long story short. Had to get a jtube. Was scared about how to use. It was great! Helped his nutrition and strength. In our instance, we definitely preferred a jtube over a stent. Keep coming here for advice. There are so many helpful people on this site. They have helped us immensely. Good luck to you and your family. God bless!!

nancyann3

cfight said:

Hi Susan,
My father (age 64)
Hi Susan,

My father (age 64) was diagnosed with Stage IV EC last December. The biggest side effect from chemo and radiation was fatigue. My mom was very proactive in making sure he received fluids in between treatments which did help his energy levels. My father was fortunate because he was able to keep his appetite during treatments. The good news is that there's a lot of treatments available to address side effects from chemo and radiation. I'm so sorry to hear about your father's recent diagnosis. It was scary for me and my family in the beginning, but once he started treatments, we felt a lot better. Sounds like you're on that track which is great. I'll send positive thoughts your way.

Carolyn

Hi Susan
Sorry you and your family are going through this. You came to a good place. I have learned a lot from the people here.

My hubby is going through chemo and rad. He has been doing chemo for almost a year now. The biggest thing we have found is keeping him hydrated.

Extra hydration between chemo treatments helps a lot.

Eating can be tough also. We use the Shakes, like boost, or ensure, or carnation breakfast. You can add calories to these by adding whey protein, ice cream, yogurt.

I also would suggest a J-tube. It is not hard to take care of and can be a life saver if he doesn't have a appetite. It also bypasses the the stomach, so if your father has any nausea, it wont effect that.

Emend, Zofran, phenergan are antinausea meds you may learn about through this. It is important to take antinausea meds before nausea starts.

If a sore mouth becomes a issue, baking soda, salt and water mixture is a recipe to use to prevent sores. Biotene tooth paste and mouth wash can help. If he does get mouth sores the docs can perscribe a mouth rinse called Mary's Magic Mouth Wash.

His white blood count may get low from chemo. You will want to be careful during these times about exposing him to people with colds and such.

His red blood count may get low too, so don't be alarmed if he has to have blood at times.

www.chemocare.com is a good place to read about chemo side effects.

Each person reacts differently to treatment. Your father will react in his own way and you will learn them and after awhile be able to predict side effects and prevent some.

If you have question about anything. We are here. Dont be afraid to ask. You will probably hear from others with more experience then me.

I wish you the best of luck and remember to take one day at a time.

Nancy

Susan_E

BMGky said:

The medicines offered to control the side effects really help. However, my husband developed a throat infection. Long story short. Had to get a jtube. Was scared about how to use. It was great! Helped his nutrition and strength. In our instance, we definitely preferred a jtube over a stent. Keep coming here for advice. There are so many helpful people on this site. They have helped us immensely. Good luck to you and your family. God bless!!

Thank You
Thank you for the wonderful feedback and advise.

My dad had a J tube installed in December, so we're ahead of the game there.

Unknown

Susan_E said:

Thank You
Thank you for the wonderful feedback and advise.

My dad had a J tube installed in December, so we're ahead of the game there.

This comment has been removed by the Moderator

Boston67

How to Take Control
Hi,

My background is running an insurance company and as an insurance company regulator. I also know how to get things done.

At the facility I was first at (tufts) There was a buracuracy below the doctor's that arranged appointments with other administrative people. Everything took time. I broke that by just overwhelming them on the telephone and in person. I just did not go away until things were properly arranged. Someone at the HMO answers the Presidnets phone and some people will get things done for you. Try also local elected officials. he hospital had a person on call to solve problems. Use them. The operator will know how to get them.

All states have laws that help consumers. Here in Massacgusetts a law penalizes them for unfair business practices and unfair claim practices. Google these words and your state and use this to demand fast prompt approvals or ways to appeal disapprovals. Use US congressman and senators, the govenors office and the press. They deal with this all the time and make friends with the staff person at the congressman's office that helps you.

Find some family members to help you with this. Those that get things done. My sister got the medial records and slide to Dana Farber the same day. Without puching it would have taken over a week.

There is a magic word that works. Just say that something is "Unacceptable" Most people respond by looking for something acceptable. Write letters, send emails and leave phone messages, then overwhelm them with gratitude when they help.

I was told that the PET scan would take a week before it could be scheduled, and learned from the technicans that they stay and do every scan asked of them. Tufts CT scanner is attaffed 24 hours a day. My Pet scan occurred 24 hours after the request and the CT scan within the same day.

Take and demand control and things will move faster. Play the cancer and dying card. It works!

Keith
Age 67 Boston
Stage IV
Pretreatment