Seizures and needles and pills,Oh My!

On Monday, March 7, I had a seizure that sent me to the hospital for a couple of weeks. It was disorienting and I had trouble with space and time as a result of being given steroids. I was also given Keppra,Tarceva and Pepsid.

I was finally released to go home last Friday, March 25.  I am having the bathrooms retrofitted and partcipating in  going to occupational therapy to build strength and balance. I have a blood clot as a result of being in the hospital so long.  I have to take blood thinner shots to the stomach as a result.

In spite of the difficult times, I am just so happy to be home.

Not a lot to report

I had my check-up appointment with my oncology nurse, Irene (Dr. B wasn't in that day) and the usual blood work panel.  No other scans or tests this trip.

The blood work looked good overall.  Irene thinks I am doing great.

My foot and calf continue to be numb and seem to be getting weaker.  The outer toes on the right foot have also become numb.  I have worked with physical therapists in both Northbrook, IL and Scottsdale, AZ to address this problem.  I am working with both of them, obviously the one in Arizona is just occasional phone call or email, but I like his ideas and approach even though it is a little different than the local therapist.  My hope is that they will collaborate to do what's best for me.

I'm doing my PT exercises daily and seeing the local PT twice a week.  Hopefully, this will improve things for me.  Crossing fingers! 

Good Results (but could be better...)

Hi everyone,

Today I had the works done at Rush – MRI to brain and to lower spine, CAT to lungs, blood work and Dr. Bonomi consultation.

Dr. B is very happy with the results, which are essentially stable from the prior scan with a few minor decreases in lesions in the lungs.  The tumor markers remain at rock bottom.  This is good news, but I had been hoping for more progress.  Dr. B thinks this may be as good as it gets, but that it is very good.

There is still the growth in the lower spine, which they can’t determine exactly what is going on but is likely the cause of the numbness in my left foot and calf and the weakness I’ve been feeling in both legs.  Dr. B once again thinks this might be how things are going to remain.  I’m very unhappy about this.  He suggested I talk to my neurosurgeon and see if she has any ideas and also see if my physical therapist (who is currently helping me heal from a frozen shoulder – not cancer related) might be able to identify ways for the legs to feel better.

I will try both of those things.

My next appointment will be February 22 and will only include blood work and a checkup with Irene, my oncology nurse. 

Hope you are all well and having a good start to the new year.

A Happy Ending for 2015

This year has had its ups and downs, but fortunately it is ending on a high note.
Yesterday, I had an appointment for blood work and a consultation with my oncologist.  All looks good, my oncologist is very happy with my progress and the tumor markers in the blood are now very, very low.  That's a good sign.

But best of all, I also picked up my Tagrisso from the RUSH pharmacy and I didn't have to pay a dime - no deductible, no copay, nothing!  What a relief! 

Unbeknownst to Doug and me, family members from both sides were making calculations for what they could sacrifice to help us pay for this drug if insurance didn't cover it.  Can't tell you how moving that is.  We are so lucky to have such wonderful families on both sides.

Next appointment will be Jan. 25 and will include the works: CAT scan to lungs, MRI to brain and to lower spine (found a small lesion there last time that helps explain the numbness in my left foot and lower leg) as well as the usual blood work and consultation with Dr. B.

Between getting access to Tagrisso from Michigan to the huge improvements that occurred in my last scans to finding out the Tagrisso will be 100% covered by my insurance, this year has definitely ended strong.

Thank you for all of your support and concern throughout this year and prior years.  It means a lot to know people are following this blog and are interested in what's going on with me.  I hope it also provides hope and inspiration to others in one way or another.

May you all have a very Happy New Year with good health and much happiness in 2016.

Today is the day I've been waiting for

Scan on left is screen from prior lung scan.
Right is today's lung scan.  Cancer is the white dots.

Today I have great news to share.  The new drug is definitely improving my condition.  Today I had an MRI scan of the brain that showed no lesions visible and no sign of growth.  I had a CT scan of the lungs that showed significantly reduced volume of lesions and shrinkage in the remaining lesions in the lungs. My bloodwork showed further improvement in the tumor markers as well as good results along all the other measures.  The results were just amazing in such a short time.  I’ve been on Tagrisso for all of 7 weeks.

I did have one other MRI of my lower spine since I’ve had numbness in my left foot and calf for a couple of months.  There is some irregularity in the bundle of nerves at the end of the spine that Dr. Bonomi thinks is similar to the irregularities I had in my brain’s meningeal lining in mid-2014 so there may be some cancer there.  It may also dissipate over time with this drug but it also may be permanent.  They really don’t know.  They don’t think it will get worse.  If this is the sole remnant of cancer over time, I can live with it.

The process for accessing and distributing the drugs isn’t fully worked out yet, so we will likely have to make one more trip to Lansing to get my next supply.  After that, Rush should be ready to distribute it.

More good news.  Irene is absolutely certain that insurance will cover the drug for me since I am already on it, although there may be some kind of co-pay and we don’t yet know what that would be.  This is a huge relief for us.  I’m sure the co-pay will be far more manageable than the retail cost of $12,750 per month!

We are starting our Thanksgiving celebration early this year!

Thanks to all of you for your ongoing support – it really does make a huge difference!

The miracle drug is now FDA approved!

The drug I have been taking since October 2 by driving to Lansing, Michigan has been approved at last by the FDA.  So just in time for winter storms, I will no longer have to take that long drive and can get the drug, now called Tagrisso, near home.  I am really happy.

But it comes at a price...

The news is saying that Astra-Zenica is charging $12,750 per month for the drug.  I am hopeful our insurance will cover it.  If it doesn't, our savings will get tapped out quickly.  Let's hope it doesn't come to that.  It shouldn't since insurance covered the Tarceva I was taking before, which was a bargain at $18,000 or so every 3 months!

The drug seems to be working really well.  The tumor markers in my blood have gone way down and all my other blood measures like red and white blood cell counts are back in the normal range.  Next Monday is scan day with both MRI to brain and CAT to lungs so we'll see what Tagrisso has done to reduce the tumors in those places.

I think it will be a very Happy Thanksgiving with a lot to be thankful for.

Happy Thanksgiving to all of you.

Things are starting to look up!

I didn’t expect to have much news from today’s visit with Dr. Bonomi since we didn’t do any scans.  But we did take blood.  And there was good news there – the tumor markers that had steadily been going up for the past many visits came way down!  The CA-125 marker came down from 67 to 12.  The CEA marker came down from 20.9 to 5.2. 

Overall, I’m feeling better too.  Not as achy, more alert, and stomach feeling much better.  I haven’t vomited in over a month.  It’s looking like this new drug is working for me.  We’ll have the scans that will be definitive about the progress on November 23.  The drug is still awaiting FDA approval.  Dr. Bonomi is now hearing late December.  I hardly pay attention anymore since they’ve been saying FDA will approve by the end of the month since April or so.  I’m on the drug, and although I’d prefer not to go to Michigan every 6 weeks to get it (especially in the winter), I’m happy to be on it.

Let's hope the scans reveal more good news in November.