My Dad's Journey with SCLC-ED

[simplyklb]

What has led us to now...

Back in April, Dad said that he needed to go see the doctor. Mom was coughing and couldn't get rid of her cough. She made appts. for both of them to see the doctor on Thurs., April 10th.

During the doctor's visit, Dad had a chest x-ray and a spot showed up on the x-ray. The doctor told Dad that he had pneumonia. We were puzzled because Dad had a pneumonia shot last fall.

He went back to the doctor on Fri., April 18th. The doctor ordered another chest x-ray and then a CT scan on Dad.

Dad went in for the CT scan on April 23rd. We did not get the results until Mon., April 28th. The CT scan revealed a tumor on the right lung along with a few enlarged lymph nodes. A spot on the liver along with an enlarged lymph node was noted as well as.

An appt. was scheduled for May 9th with a pulmonary specialist. A CT scan of the abdomen was ordered.

On Wed., April 30th, Dad underwent the abdominal CT scan. Dad's primary care physician called us and told us that Dad needed to get into the pulmonary specialist ASAP.

On Thurs., May 1st, my oldest brother went to the pulmonary specialist with our parents. The news was not good. The pulmonary specialist ordered a bronchoscopy and a PET scan.

The bronchoscopy was performed on Fri., May 2nd. My middle brother and I took Dad to the appt. After the biopsy, the doctor came out and talked to us. She told us that the tumor looked angry and that it was blocking his right bronchial tube. She said that she took several biopsies. Angry told me that the cancer was aggressive.

At shortly after 5 PM on May 6, 2008, we received the results of the biopsy. Dad was diagnosed with small cell lung cancer.

On Wed., May 7, 2008, Dad had his PET scan. We were at the outpatient center for 90 mins. We were also told that Dad would meet with the oncologist on Tues., May 13th at 9:30 AM.

On Thurs., May 8, 2008, Dad was admitted to the hospital for pain management. His pain was unbearable.

Dad's oncologist came to the hospital to meet us in the afternoon. The consult was ordered because the nurse told me at one point. At 12:30, the oncologist came in and spoke with my parents and I for the first time. We all three really like him. The oncologist was very upfront with us, which we really appreciated. We learned about the treatment plan and got the results of the PET scan. The PET scan pretty much revealed what we knew... There is spread to the liver (couple of spots) and the some of the bones. The prognosis is 1 to 2 years with treatment. Without treatment, it would be a month or two. We are not looking for a cure. There's a chance that the treatment will fail my dad. The oncologist said that he has only seen this in a handful of patients. The oncologist wants to do radiation first to help decrease my dad's pain. He is guessing 10 to 15 sessions. Chemo will start after radiation ends. I asked the oncologist about what chemo drugs would be used... He told me Carboplatin and VP-16.

My dad finally had his MRI on Fri., May 9th. He had a 2 1/2-hour one of his brain and spine. One of the oncologists did a quick glance at the scan and said that it did not look like any mets to the brain. I am sure we will learn more later after the MRI is reviewed.

After the MRI, my dad was taken to his first radiation session. He had his second radiation session this morning.

As of Wed., May 14th...

The results of the MRI did show a lesion on the skull. It has not gone thru the skull.

Dad was released from the hospital on Mother's Day.

My dad has had five radiation treatments so far. He has five more to go. On Mon., May 12th, my youngest brother and I met with one of the radiologist oncologists. The rad onc in charge of my dad's treatment was out of the office. The reason chemo has not started yet... They are radiating a large area. If chemo was to start now, the rad oncs would have to cut back on the amount of radiation that they can give Dad.

We meet with Dad's oncologist tomorrow at noon. Dad has his sixth radiation treatment right before that.

As of May 22nd......

Dad has finished radiation. He had his tenth and final radiation treatment on Wed., May 21st. Now on to chemo.

Dad saw the oncologist on May 15th. The onc pretty much told us what he told us in the hospital. Dad will be getting chemo three times a week every three weeks. The first day the infustion will take 4 hours because Dad will be getting both the Carboplatin and VP-16. The other two days will take 2 hours since Dad will only be getting the VP-16 on those days. We set up a time to meet with the nurse practitioner for Wed., May 21st.

My dad will be getting his port on Fri., May 23rd. We have to be at the hospital at 6:30 AM. His youngest sister will be in town and some of her kids so one of them will take dad and I to the hospital.

My dad has been having a lot of effects from the radiation. It is difficult to get him to take certain meds that could help relieve some of his symptoms.

We met with the nurse practitioner on Wed., May 21st. She checked Dad out.... He had low blood pressure. He has not been eating or drinking very well. She decided that he needed fluids right away. He got introduced to the infusion room at the onc's office. It's where he will have his chemo treatments. He had fluids for 2 1/2 hours. After the fluids were done, we went to his radiation appt. Dad got the treatment and we met with Marge, the nurse specialist, for one last time. Dad goes for follow up on June 27th.

Today is a free day from appts. YAY! Next week is booked up with appts. for both mom and dad. Mom's been diagnosed with cancer.. They are not sure what the point of origin is with her cancer.. lung (CT scan caught it in April) or colon (spot lit up on her PET scan in that area). She met with the oncologist on Wed. and he feels it is lung cancer for now. Her colonoscopy on Wed., May 28th will tell the story.

My family and I have run the gamut of emotions over the last couple of weeks. The whole experience has been overwhelming and draining to say the least.

I am not angry at my parents for having cancer. I am angry at the crap care that they got from the primary care physician. They are both former smokers who quit years ago. Their PCP knew that was part of their histories. The PCP should have been on the look out for it.

I am lucky that we have a great support system. We have lots of family and friends willing to help us.

As of June 8th.

Much has happened since I last updated.

My dad got his port on Fri., May 23rd. It took a long time. The prep time beforehand took awhile. My dad was having chest pain so they had to do an EKG. The EKG was fine... It was heartburn.Then the procedure itself took awhile because my dad was dehydrated. His port is on the left side of his chest. Right after the port placement, dad had to go over to the oncologist's office for IV fluids.

On Tues., May 27th, my dad started chemo. He was there for nearly four hours. He saw the nurse practitioner who referred him to the GI specialist for a scope of his esophagus. This was one appt. I didn't go to so Dad handed me his counts when he got home.

The following morning Dad had to met with the nurse practitioner at the GI's office. A scope was scheduled for Wed., June 4th. It is believed that my dad is suffering from radiation burns. Then he had chemo that mornign and the following morning.

On Tues., June 3rd, dad went in for a checkup with oncologist. His counts were OK. He had fluids.

On Wed., June 4th, Dad had his scope. In the words of the GI doc, his esophagus is pretty ugly. There is 30 to 40 cm of esophagitis. He had a small ulcer in his stomach. Biopsies were taken of all inflamed areas.

On Fri., Dad had blood draw, IV fluids, and a platelet infusion. I got a copy of Dad's blood counts. They were in the crapper. WBC was 0.1 and platelets were 5. Dad is prone to infection and bleeding due to his counts. Eating and drinking continue to be a big problem. Dad met with the nutritionist who tried to give him some suggestions.

Dad goes back to the oncologist tomorrow. He will have blood draw, IV fluids, and platelets.

As of June 18th

On Monday, June 9th, Dad met with the oncologist. The onc checked him over real good. He got fluids. He did not need platelets because his platelets were at 48,000. His WBC was at 0.7. His counts were on the rise.

On Fri., Dad met with the nurse practitioner. His counts were on the rise. His WBC was 1.5 and his platelets were 98,000. His pain meds were switched. Dad had to go off the morphine because it was causing way too many problems. He is now on Oxycodene and a Fentanyl patch. His hemoglobin was borderline so he got a unit of blood over at the hospital. It will be a few more days before the morphine is totally out of his system. He also got a red blood booster via injection.

On Sat., June 14th, my dad was able to attend his oldest granddaughter's wedding. We were soo glad that he was able to go! There were times that we thought he was not going to be able to attend.

On Sun., June 15th, the palliative care nurse came to do the intake interview. She spent two hours here. They are going to have a nurse come in twice a week to check Dad's pain and hydration.. Trying to save us some trips. We are going to have an OT eval done. My dd is not super steady on his feet. He has a shower bench that helps him greatly.

On Monday, June 16th, Dad met with the nurse practitioner. His counts were much improved.. His WBC was 3.8 and his platelets were 292,000. Good enough to start his second round of chemo. There is still some talk of the stomach tube.

On Tues., June 17th, Dad started his second round of chemo. He has done OK with the first two days. Dad did experience some shortness of breath and chest pains yesterday. They had to stop chemo for a bit to check him out. Everything came out OK.

Dad is eating and drinking better. His esophagus is slowly healing.

Fri., June 27, 2008

I have noticed improvement in my dad this week. It's about time.

On Tues.,June 24th, Dad saw the oncologist. The oncologist upped his pain meds. Dad's Fentanyl patch is now 50 mcg instead of 25 mcg. (We are trying to lessen his dependence on oral meds.) My dad is sad and depressed about his cancer. The internist (whom I don't like) upped Dad's Prozac to 60 mg a day. His counts were low but he seemed to be holding his own.

Today, Dad had a follow up with the radiologist oncologist. The rad onc feels that the tumor is shrinking because Dad is coughing and bringing up mucous. That was good to hear! She told him to try various food items to get his weight back up. The rad onc said that radiation followed by chemo is difficult to recover from. I don't think that any of us were prepared for how it impacted my dad. Dad goes back to see the rad onc in three months.