Ask Leo Hanes All About Lung Cancer

Somewhat energetic again, waking at 0730, took a walk through the neighborhood to view the area where the car fire took place last night

Took apart clothes dryer to try to remedy a new noise….

Investigated lost CPP check , and recorded contact information

At 1900 noticed back/lung pain starting again, took 2 x 500 mg perasidimol again

Thursday Sept 11

Awoke at 0730.…7 year anniversary of 9/11 in NYC

Appointment with Dr Retera at 1350, reviewed CT scan, confirmed no evidence of tumor, but radiation damage is in progress ( pneumonitis ) , that could last up to a year

He prescribed an inhaler to help with cough , and breathing, and continue prednisone medication, with next appointment Oct 15.

It was somewhat a relief knowing more about the radiation pneumonitis, yet frustrating at the same time that the treatment was causing such damage

The positive is … NO tumor….SMILE

Friday Sept 12

An uneventful day….seems like the inhaler is helping relieve cough symptoms.

Looking forward to my daughter, and son-in-law arrival from Canada tomorrow

Was an uneventful day, do not recall any particular fatigue….worked online most of the day

Thursday Sept 04:

Was up at 0715, enjoyed breakfast, watched rerun of Sara Palin speech on CNN…….was feeling a little funky by about 1100, nothing really special

At about 1315 I felt a pain building in my right ribcage/lung area, that became really overwhelming , lasting intensely about an hour…a real pulling pain….it reminded my of the pain I had experience in 1982 when my left lung collapsed……..scared the bajeebers out of me.

During this I took 2 X 500 mg perasidimol, pain subsided, and I slept from 1500- 1700

2030 took another couple perasidimol before sleeping for the night, knowing I had doctor appointment tomorrow

Friday Sept 05

Up at 0800, still very aware of “pulling” in right lung rib cage area, coughing was painful, took my regular prednisone meds, and my throat gunk meds……

1030 had chest x-ray taken in prep for doctor appointment

1215 we met with Dr Retera, he shows us the inflammation/ pneumonitis area has reduced, still an area closest to esophagus remains visible.

There is an overall lung shrinkage taking place ( i.e. diaphragm is higher on right side maybe 20-25%, which helps explain shortness of breath)

Yesterdays pain is not symptomatic or consistent with the pneumonitis progress visible….we discussed the shrinkage, scarring possibly resulting in fibrosis in some area, can’t predict of course

He prescribed another round of blood tests, and another CT scan, both of which were completed before leaving hospital

Next appointment is scheduled Thursday Sept 11

Took 2 X 500 mg perasidimol before bed at 1030

Saturday Sept 06

Experiencing some agitation , and anxiety today, overall fatigue not too overwhelming……feeling like the chemo fog and or med side effects taking over again

Sunday Sept 07

Up at 0700, breakfast etc, actually feeling ok, then I laid down just for a minute at 0900 , and woke at 1145

There has been little noticeable changes in my side effect symptoms, maybe a tightness in my lung area experienced with cough still hanging on…

Trees still battling some stress symptoms, causing her emotions to spring forth surprising her once again Monday…leaving her feeling she may not have recovered as much as she thought earlier….another side effect of lung cancer is its effect on care givers and loved ones

I am anticipating my follow up appointment with Dr Retera this week - Sept 05

The roller coaster ride continues ….

Apparently the antibiotics previously prescribed eliminated the “plain old infection” possibility, leaving radiation pneumonitis as the probable cause

My next follow-up appointment is Sept 5

“Radiation pneumonitis is an interstitial pulmonary inflammation that can develop in as many as 5-15% of patients with thoracic irradiation, most often due to lung cancer, breast cancer, lymphoma, or thymoma. Acute radiation pneumonitis occurs within 1-6 months following treatment. Symptoms can include low-grade fever, cough, and fullness in the chest.”…. By emedicine.com

Here is an article that may be helpful to others :

Radiation Pneumonitis

Aug 16 - Aug 17

Trees back to work part time, will see company doctor tomorrow

I slept 2.5 hours in the afternoon

Aug 19

Started taking medication 1 x 5ng in morning, and 1 x 5 mg in the evening, proves to work better for my ups and downs

Trees sees company doctor, who acknowledges the stressful situation, will try working 3 hours x 3days per week initially , then 4 hours x 3 days

Aug 20 - 22

Continue with meds 2 x 5 mg daily seems to be keeping me smoothed out..

Still experiencing afternoon fatigue and napping a couple hours…

Aug 23 - 24

Still maintaining an energy for online working, even though fatigue still persists somewhat

Enjoyed watching the Olympics through the week, as well as the closing ceremonies

Aug 25 - 29

Nothing significant to report…..some afternoon fatigue, but the meds and side effects seem to be balanced so far…

Aug 30 -31

A quiet weekend, with normal chores and shopping Saturday morning, with a trip to a glass mosaic shop near Eindhoven in the afternoon

Some fatigue still persists, with a slight throat tickle and cough, might try taking meds 1 x 10 mg again……..

A hindsight note: Trees had been following a blog online about a lung cancer patient, that she had found very helpful over the past six months….She just learned that this patient had passed away last week…. another effect of my illness…she had connected with this persons story…

Trees came home from work at noon on Monday Aug 04 . She had hit the wall of stress, having endured her own shoulder surgery this past November, all the physiotherapy involved still, my illness, recovery, remission, and now radiation side effects……..in addition she has to be the arranger, and translator for every medical meeting we have as my Dutch is not sufficient to communicate effectively enough here yet

The medications kept me “high” all week, and I continued to work through it online

On Saturday Aug 9 we traveled to the Amsterdam area to visit a mosaic shop Trees is interested in, a 6 hour outing

On Sunday Aug 10 we changed my office from one room to another so Trees could have some inside space for her mosaic shop

All this activity effectively wiped me out by the afternoon……whoosh, I had bottomed after coming off the meds on Friday.

Monday Aug 11, Trees has appointment with family doctor, he prescribes a beta blocker medication, and she will be off work on sick leave for the stress, suggesting we both might access some support resources for recovering cancer patients.

Aug 12 - Aug 14

I have been off all the medication since last Friday…

Experiencing a lot of fatigue, sleeping every afternoon 2- 3 hours plus a full 8-9 hours nightly

By Thursday I am feeling somewhat more energy, cough persists, muscle aches, joint pain, occasionally slight fever, and shortness of breath

“I have been having some side effects from radiation I think for past couple weeks, nothing serious, just keeping eye on it for now, next scheduled follow-up appointment not until Sept 3, I think”

Change of Plans: Aug 01

Awoke at 0400 short of breath, and coughing that persisted, took a med that helped a little

Trees called hospital for appointment. Got one with another Dr Retera in Waalwijk, as Dr Kessels was on vacation

Went to doctor today at 1600, described my symptoms, took an x-ray, a visible infection going on in the middle part of my right lung…….it may be a predictable side effect from radiation called radiation pneumonitis, or just a plain old infection

I am on 2 types of meds for next week, then see this doctor again in 2 weeks, and see which drug wins!!

The radiation pneumonitis is right on schedule, so that’s my bet………..

Now we will see if the drugs take me on my merry way too!! The list of side effects look like party time!!