August 6

On August 6 a CT Scan was done on my brain. Before I could switch from Heparin (which requires hospitalization), it was important to know if I had any clots or bleeding in my brain. If so, changing to the longer lasting Lovenox would be too risky. Though this was part of preparing to be released from the hospital.

I was not prepared for what was found – 7 tumors in my brain.

After the shock of the news and all that it meant,  I wanted to know how  do we deal with this. I need chemo for all my other tumors and soon!

The plan is more radiation. 10 treatments for my brain. Chemo would need to wait two MORE weeks. The trial drug seems to have failed me. The standard of care now looked like the better option.

Some of the new tumors in my spine are suspected of the cause of some or most of pain in my back and abdomen. Radiation treatment will be concurrent with the remainder (5) treatments for my brain. It will not delay chemo. It starts on Saturday, August 26th.

 

Sorry for being out of touch for so long

I have been ill, exhausted, or busy wrapping up the sale of my business. I was not able to find the physical or mental energy needed to write for some time. I do hope you have found Ken’s Blog. He keeps his current and writes from the heart, while I try to keep up on the basics. His is at kenwheatley.wordpress.com.

I am back in the hospital. I’v e been here since Monday, August 3. I came in for unbearable chest pain that I presumed was a PE. It was. I was put  on Heparin, a blood thinner. The pain from the clots lessened each day and are now mostly gone. But other abdominal and back pain have kept me in the hospital. The pain that remains is from my growing tumors.

I did get into the USC trial on July 29. That was after finishing radiation on the tumor blocking my airway, then a two-week waiting period from the radiation, and my July 24 – 28 hospital stay for pain. Because I was in the hospital, Dr B got me a waiver on the trial for this past week’s appt. until I could participate in the trial.

I’ve gotten though most of this illness without pain until this recent many weeks. I had been led to understand pain was manageable. But I am finding it to be a challenge for me and my doctors. I am tiring now and find it difficult to continue to write . I will try later in the day.

 

Thornton Hospital

By Friday morning, the abdominal pain I’ve been struggling with became unbearable. Ken brought me to the ER. I was later admitted. The first tests eliminated concern about spinal cord compression. The pain was eventually attributed to the tumors increasing in size in/on my liver and in a vertebrae in my lower back.

The side effects from the pain killers I had been receiving at home added to my pain and problems. Different drugs were tried, they now have the pain under control and the nausea eliminated.

I’ve been told they will discharge me today. Meanwhile, I am trying to get an appointment to start the clinical trial at USC.

 

PE

After I finished chemo last Wednesday (July 8th), I noticed a pain in my side. By the end of the day the pain was in the center of my chest and I was short of breath. I called Dr B’s nurse case manager. Erin’s the one who listens to all my complaints, concerns, and worries. She checked with Dr B. I needed to get a CT scan. That late in the day, that means a trip to the ER. Ken met me there and brought me dinner. A great sandwich from Submarina with all my favorites.

The CT confirmed a Pulmonary Embolism (PE). It’s a blood clot in one of the pulmonary arteries (in the lung). The ER doctor wanted to admit me. I was concerned about getting out in time for my appointment at USC on Friday. With the admitting process underway, Dr B was reached by phone. She felt I could manage at home. My prescription was changed from once, to twice a day injections with a different dose. I was to return immediately if breathing became more difficult.

Ken and I were both a little nervous about being so far away from the hospital if things got worse. But the ER doctor reassured us and we went home. They offered lots of pain pills, but I decided to go with what I already had on hand.

I was glad to be home with Ken. Thursday I stayed home to rest. Friday we went to USC as planned.

 

Numbers Down

My counts didn’t hold and were too low for chemo today. It’s been postponed a week. In the meantime my counts will be watched and I will go back on Neupegene if needed. More later.

 

CheckUp

Dr B’s conclusion is the chemo did the damage to my throat and mouth. All should heal with time. Premeds and lots of fluids during treatment should avoid this for future chemos. Now it’s mostly a sore throat and sketchy voice. I’ve added another medication – a rinse to soothe and heal my mouth and throat. It’s nice to have something to help get me through the night.

Both the dentist and the ENT doctor independently think the ear/jaw issue is due to dental pressure  - TMJ of a muscular and tendon nature rather than typical bone and joint. They both recommended a night guard. It’s been a relief to know it’s nothing serious. The consensus is nice, too.

Tuesday’s blood test indicate I’m neutropenic again. Which means my white counts are dangerously low and I am at high risk for infection. I feel fine. I’m getting daily injections for a week to stimulate my bone marrow.

 

Pink

“The politics behind the pink ribbon”

“Even as the economy implodes and the nation prepares for a historic election, the U.S. is flooded with the pink ribbons of Breast Cancer Awareness Month. But behind the pink is politics.”

http://www.msnbc.msn.com/id/27283197/from/ET/

 

Great News!

Friday morning I had my first CT scan since being on Tarceva (and the clinical trial drug). In the afternoon we got a phone call from Dr B. with a preliminary report. I am responding better than expected. The main tumor is at least 50% smaller and the lymph nodes in my chest are dramatically improved. This response is expected to continue, too! That’s the typical trend. We are ecstatic and a bit stunned. We get the full report on Tuesday, but get to start celebrating now!

 

Let the Trial Begin

On Friday I turned a corner and my aches and pains lessened lifting my spirits – A LOT. This helped to cope with the disappointments about my worsening condition and not getting into the most promising trial. Until then I was getting anxious about continuing on without any treatment while waiting for all the test results.

Tuesday afternoon we got the good news that Friday’s and Monday’s tests cleared me for the trial. I start right away. Ken and I spent a long, tedious afternoon waiting… for my doctor’s appointment, for the results of all the tests, for setting more appointments, for insurance approvals, and for the medications. Some of the insurance issues remain to be resolved but it should not take log to sort out.

Other good news… while the tumor in my lung, the nearby lymph glands, and the spots in my bones show increased activity, the one in my abdomen shows no activity at all. Since this was between my stomach an liver, it put both organs at higher risk. So it is a relief to have this threat reduced.

I will be starting a new IV medication soon to strengthen my bones to help compensate for the weakening effect of the cancer. It will only be once every 4 weeks and only a 15 minute infusion. I will still have many appointments due to all the testing and monitoring. But, I should have two-week long breaks in between much of the time.

One of the medications I’m getting is Tarceva – the “standard of care” for NSCLC. It is usually more effective treating women non-smokers. So that is great news. The chief side effects are rashes and pimples on the face and upper body and very dry skin. These are expected in to start in about 10-12 days. The rashes should come in cycles with fewer cases over time. Fatigue and mild nausea are other expected effects. 
The treatments are expected to stop the growth of the tumors. Rarely, but sometimes, they will shrink them. The combination is being tried to see if it will provide more improvement.

I remain eager to see how the Lucanix does. Though I have no idea when the results might be available. I am hopeful it will be used in another trial not far down the road, one that I might qualify for.

 

Whew!

The diagnosis is a pulmonary embolism. Yes, that is a serious concern, but I’m actually relieved. I feel better knowing that it’s not likely to be the tumor causing the aches and pains. I will be getting a CT tomorrow to confirm.