Latest CAT scan results and medications

I had an appoint for a CAT scan to the lungs, blood work and consultation with Irene and Dr. Bonomi this past Monday, April 25.

The scan showed stability and even a slight reduction of size of the nodules in the chest.

There were no scans for the brain and spine - that will occur on May 23rd - so no new information available at this time on that.

Dr. B. wants me to add Avastin to my medical regimen.  He thinks it might be a boost to the Tarceva and make it more effective. Unfortunately, it is delivered via infusion so will add even more time for me in the hospital, which is already a long day every three weeks.  But if it can make things get better, it's worth it.

Dr. B strongly supports the Rehabilitation Therapy work I'm doing 3 hours 3 days a week.  He thinks the combination of Tarceva and Rehabilitation is my best bet for a recovery.  I sure hope this will work.  I am feeling more challenged by the lack of independent mobility, strength and stability than anything I have encountered so far throughout my dealings with cancer.

Radiation Consultation, Physical Therapy, and Wooden Railings

Yesterday, on Dr. Bonomi’s recommendation, I had a consulting appointment with Dr. Gaura Marwha, a radiation oncologist, to get his opinion of whether radiation to the Cauda Aquina (Horse’s Tail) would remove or reduce the numbness I feel in my left leg and foot.  After checking my reflexes and hearing my history with the cancer dispersing through the meningeal lining of the brain and spine, his recommendation is to just be watchful and stay on top of the MRIs.  He said that the best the radiation would be able to do is prevent the cancer in the meningeal lining from getting worse.  He thinks that the Tarceva and the physical therapy are the best hope for the numbness to go away and the balance and strength to get better.  I was not surprised by this conclusion. 

I think I have found a good way to handle the rigors of the physical therapy as of today.  I had been pushing hard to do the exercises quickly and efficiently over the past couple of weeks and I’ve wiped myself out to total exhaustion.  Today, I took a different approach.  I was deliberately slow and took several rest breaks throughout the 3 hour therapy session.  I was able to stay fairly fresh and complete all the exercises the therapists wanted me to do. 

Since 10:00 a.m., we’ve had a couple very skilled men putting in railings for me to help me go up and down the stairs.  They just left here at 7:00 putting finishing touches on the railings.  They’ve come up with some really great solutions.  You’ve never seen so many wooden railings in a house!  But they are beautiful wood and the house still looks good.

Overall, it seems that things continue to get better.

Slow but steady progress

On Monday, April 4, I had blood work and an appointment with Dr. Bonomi, my oncologist, and Irene my oncology nurse.  Both of them are very happy with my progress and think I am doing really well.  They feel that I am a lot more alert and acute than I had been a couple weeks ago. They are also satisfied with the blood work results.

I am not at all satisfied.  My balance is still way off and I am dependent on others to stabilize.  I am using a walker to get around.  Dr. B and Irene see this dissatisfaction as exactly the proof that I will get better.  I hope they are right, but I can't get back to normal quickly enough.

Doug noticed that in the two instances where I had a seizure, it was five months after the Tarceva was stopped. Dr B agreed to a steady dose of Tarceva that will be less irritating to my stomach.  We've also cut down on the steroids to two a day.

Dr. Bonomi also recommended I consult with Dr. Gaura Marwhaa about trying radiation on theCauda Equina (Horse's Tail) at the base of the spine.Like the meningial lining in the brain, the spine has a meningial lining that has been affected by cancer.  It is possible that that is what is causing the numbness to my left leg and foot.  I have a consultation set up for this Tuesday, April 11 with Dr. Marwhaa.  It will be interesting to see what he has to say.

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.