July 2008

If approved, the Lung Cancer Mortality Reduction Act will authorize $75M for lung cancer research. It’s about time!! Please check out the link below and contact your Senator.

FYI – During the period of 1996-2003, only 16% of lung cancer was diagnosed at an early, most treatable stage. By contrast, 61% of breast cancers, 39% of colon cancers and 91% of prostate cancers were diagnosed at early stage – not surprising since screening for these cancers is strongly encouraged. It is non-existent for lung cancer.

Nearly twice as many women die from lung cancer as those that die from breast cancer.

Centers for Disease Control and Prevention (CDC): Congress earmarks funding within CDC for specific cancers. The CDC budget for FY07 includes $201 million for breast and cervical cancer initiatives, $13.9 million for prostate cancer and $14.4 million for colon cancer.

CDC budget for FY07 included $0 for lung cancer initiatives.

2007 Facts Graph 4

The link:    http://capwiz.com/lungcanceralliance/home/


The aches and pains diminished before I started the new medication. That encouraged me a lot. I started Tarceva on Tuesday the 15th. Next week, on the 29th I have some blood tests scheduled. I am still waiting for approval for a treatment for strengthening my bones against the cancer.

I should have my next CT in 5 or 6 weeks. Then we’ll know how it’s all working. In the meantime, the other gauge is pain. I have very little. Mostly the occasional twinge in my chest. I like to think that is the Tarceva working.

I have been putting in a lot of hours at work… while I can. But, it doesn’t leave much time for writing or for the exercise I know I need. It’s hard to focus on what to do next – from hour to hour and day to day. And, it’s hard to be patient.

So I watch and wait for side effects.

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.

Because of the increase in the activity of my cancer, it’s not considered stable. Stability is a requirement for the clinical trial. I need to be getting treatment again and cannot risk getting a placebo. Most patients are stable for 2 to 6 months. This had been my hope.


So it’s back to chemo. This time it’s a tablet. I should have far milder nausea. But I’m likely to still have fatigue. And there are other possible side effects like severe rashes. This is a clinical trial too – but with two medications. One is a standard treatment and the other could be a placebo or it could be a new drug.


It should start on Tuesday. It has to wait until I have more scans completed. Prompt appointments are hard to come by and that is driving the wait. 


My aches and pains tell me it’s worsening day by day. The pain is no big deal. This is a very anxious wait and it will be a very long weekend. My challenge during this wait is to manage the anxiety and stress. I know they weaken my immune system. 


Ken is doing all he can to provide comfort and lift my spirits. He hides his own fears and anxiety from me. When I am near him he always has a warm smile and loving look. I gets lots of hugs and kisses… as I always have. Keeping a cheerful under the circumstances takes a great effort. I know it’s for my sake. I still know it’s there. And, I don’t like that he has to guard himself with me. But I accept it for the positive effect it gives.

The test results from Wednesday’s CAT scan indicated the tumor has increased by about 50% from the last scan. It is still far smaller than it was initially. The nearby lymph glands have also swollen. I do not know if this was expected or normal having been off chemo for about 5 weeks…. or if it will disqualify me for the clinical trial. I will find out next week.

It is easier to take this news knowing the clinical trial is open. But, it is upsetting and frightening all the same.

After a few weeks of delays, the clinical trial that is my best hope was opened today. I may be participating as soon as next week. I’ve been anxious about not getting any treatment since my chemo ended in late May – doing nothing since then but watch and wait. It’s a relief to know I may be doing something again.


We will know more on Monday when the coordinator for the project returns from vacation. Now we need all the prayers we can get that I get the treatment and not the placebo. It’s a 50-50 gamble. Neither my doctor or I will know which one – it’s a double-blind study.


The clinical trial is a vaccine that’s administered as a shot in the arm. It has far fewer side effects than chemo and without the need to set up an IV.