The News We've Been Waiting For

Hi there,

At last!  I am so relieved to finally have some good news to report.

The word came down in an email from my oncology nurse this afternoon.  My blood work DNA confirmed what I’ve always suspected:  I am a mutant twice over.  I not only have the EGFR mutation, but also the T790M mutation.  This makes me eligible for expanded access to the AZD9291 drug that is getting all the good reports for great results with minimal side effects.

The rule for expanded access is that, until it gets FDA approval, you have to go to one of ten identified clinics that dispense the AZD9291 drug.  The closest one is in Lansing, Michigan.  I don’t know when I will start to go there, how long I will have to stay there, or how frequently I will have to go there.  I hope to have more details when I have my appointment at Rush this Monday, September 14.  I’ll share the updates soon after I get them.

A special "thank you" to other lung cancer survivors I have come across through various programs and events I've attended.  They have followed my blog, seen my struggles, and offered their own experience, research and knowledge to help guide me to this hopeful next step.

Thanks to all of you for your love, concern and support.  I never realized that keeping this blog was going to be so helpful to me in so many ways.

I Guess I Misunderstood

For all of you checking the blog today (technically, yesterday now) to see if there is news on whether I have the mutation needed for the extended access of the AZD9291 drug, there is no news yet.  After waiting for a call all day, I finally called my oncology nurse at 4:30 this afternoon and she said nothing has come in yet.  She said that my blood sample probably didn't arrive at the Guardiant office until Monday, August 24th and it would be two weeks from when they received the sample.  Nobody mentioned that little detail to me earlier. 

Since it is a holiday weekend, the earliest I can expect to hear any results is this Tuesday, September 8.

Thanks for checking in.  Have a good Labor Day weekend, all. 

An Overlooked Detail

A few days after a visit to the hospital, all of the results of scans and tests are posted electronically for me to view.  On Thursday, I was viewing the CT scan results of my lungs online and noticed something I had missed in the hard copy report I received shortly after the scan on Monday.  There was an "addendum" at the top of the report that said "there is a stable pathologic fracture and lytic lesions" in the fifth rib on the left back side.  In English, this means there in a small fracture caused by cancer, along with cancer lesions seen in this particular rib.  Amazing that Dr. Bonomi, Doug and I all read this report on Monday and none of us caught this.

This is the first time anything has been reported about the cancer getting in any kind of bone and it scares me a bit.  I called and left a message for Irene, my oncology nurse on Thursday afternoon.  I was surprised when I didn't hear back from her on Thursday and I finally called her again on Friday morning.  She was surprised that Dr. Bonomi had not contacted me yet. Irene answered my questions as best she could, although she hadn't seen the scans the radiology oncologist had referenced (and may not have seen the report yet either).  She said although this new development wasn't good, it also wasn't a major source of worry. The bigger concern was still the weight loss I'd been having. 

The information from Irene helped but I was still unsettled about this new development.  At Doug's prodding, I finally called Dr. Bonomi on his cell phone Saturday morning.  He answered right away and as I told him my fears and concerns, he said that this is not a major change and were it not for the weight loss, he would keep me on the current treatment even with this new information.  He said he has not yet had a chance to look at the scans that show the fracture and lesion on the rib and intends to talk to Dr. Shah, the one who wrote the report that mentions them, to get more information.

He said as long as I am not having any pain, which I am not, there was nothing else to do.  This could heal on its own or it could just stay there.  It does not necessarily mean there will be other lesions or fractures in other bones.  We just remain watchful and if I notice unusual pains, I let him know.

So I've made my peace with yet another cancer issue.  I'm a bit frustrated with the way this information was conveyed - with an "addendum" in a report so subtle that all of us missed it.  I am also frustrated that I was the first one to find this addendum a few days later when re-examining the report.  Who knows how long this information could have gone on unknown?

This is yet another impetus to getting on that new AZD-9291 drug as soon as I can. Hopefully, it will work at beating back the cancer in both the lungs and the ribs (and keep the brain steady too). 

I had the blood drawn for the Guardiant Blood DNA kit on Friday morning.  That involved a lot of miscommunications as well.  From Irene telling me I didn't need to register at the front lobby and to go straight to the lab and then the nurses sending me out of the lab room to go register in the lobby to the phlebotomist using the wrong tubes for the blood draw and them calling me while I am exiting the hospital garage to come back and have another blood draw to go in the correct Guardiant kit tubes.  We finally got it right and hopefully the kit was sent to Guardiant for analysis Friday afternoon.  We should get the results around Friday, September 4.  Let's hope they find that T790M mutation.


It was a very frustrating week.

5 Years and Counting

For those of you keeping track, today marks the fifth anniversary of my lung cancer diagnosis.  That time has seen a lot of ups and downs, but the bottom line is that I am still here - long past what was expected and hanging out at the tail of the lung cancer survival curve. 

With the improvements in research and subsequent treatments, I think it is feasible to hope for a cure for this cancer in my lifetime.  That's the new goal.  To reach it, more funding for lung cancer research is required.  I promise I won't hit people up for money on a regular basis, but every year at this time I do solicit for donations to the United Against Lung Cancer's Lung Run at Montrose Harbor in Chicago at 9:00 a.m. on Saturday, September 19.  I have a team that walks and/or runs for the event - Team DL.  We'd love for you to join the team or donate to the cause.  The link to do either is
http://LungRun.kintera.org/2015/dcaring.  


Many of you who read this blog already have pledged your time and money to this event.  Thank you so much and I am really excited to see you on the 19th!  It would mean so much to me for any readers of this blog to take advantage of every opportunity to donate in any way they can when they have an opportunity to help fund lung cancer research.

Thank you all for your interest in me and my cancer experiences over the past five years.  I hope to continue with updates and mostly good news for a long time to come.

Some Promising News

Hi everyone,

Well, for once I have a little more interesting news.  Yesterday I had a CT scan on the lungs with the usual results – still have lesions growing in size and number in the lungs but still the doctor is okay with it.  What he is a bit concerned about however, is my weight loss over the past couple months.  I’ve lost 7 pounds, which doesn’t sound like a lot, but based on my weight prior to that, the steady decline could mean the cancer is going after some of my body fat and muscle.  For this reason, Dr. B is thinking about changing the treatment I am on.

Just a week or so before this appointment, there was news that Astra-Zeneca is providing “extended access” of its new drug, AZD-9291, the 3^rd generation of Tarceva we’ve been waiting for the FDA to approve.  This means that at about 10 different treatment centers around the U.S., Astra-Zeneca will be dispensing this new drug even before it is approved by the FDA and made available to the general public.  I fit all the requirements for the patients who can have extended access except for one that we don’t know for sure.  There is an additional mutation called T790M that my cancer needs to carry that is the cause for its resistance to the Tarceva.  At this time, we don’t know what the cause is for my cancer’s resistance.  It could be this additional mutation or something else.  I will need to have a biopsy in order to determine.  Fortunately, another new development in the medical world is a procedure for getting cancer DNA from a blood draw instead of the usual biopsy from the tumor itself.  This means I don’t have to have surgery and that I don’t have to worry about having a tumor large enough to sample.

It will take two weeks to get the results from the blood sample.  So until then, I will continue on my current treatment.  If I have the T790M mutation, I will be going to Lansing, Michigan, the closest location for the drug being dispensed, to get it.

So here I am once again hoping to be a mutant of a particular sort.

Even if I don’t end up having T790M, I will still be able to access the AZD-9291 drug once it is approved by the FDA.  That is supposed to be happening before the end of the year, and according to Dr. B’s latest intel, before the end of October. 

Things are looking up!  

Nothing New at this Time

My checkup at the hospital was supposed to be Monday July 20 but they couldn't get an MRI scheduled for that day so I had everything moved to yesterday, July 27 instead.  So I had the MRI, blood work, Dr. Bonomi appointment and chemo yesterday.  The MRI looks the same as last time so all is well.  Everything was pretty much the same across the board. We are still waiting for the new treatment to be approved by the FDA that should be a good fit for me . 

That's all the news until August 17 when my next appointment is scheduled.