Coming up to speed with what's been going on

Hi everyone,

I know it has been a while since I shared a detailed medical update, but I’ll bring you all up to speed now on what’s been going on for the last couple months.

I’ll start with the visit to Rush in May.   I had a CAT scan to the lungs that showed stability and a little bit of reduction in the number and size of lesions in the cancer in the lungs.  That was good news, but my focus was really on the continual degradation of my legs and my inability to feel my left leg and foot and the start of losing sensation in the right foot too.  The only solution they had for me was that hopefully the Tarceva would reduce the cancer in the meningeal lining of the lower spine and that I should keep doing the physical therapy to make the muscles and nerves rebuild.  This was not a satisfying answer for me.

I had a consultation with a radiation oncologist to find out if radiation to my legs would help them heal.  Essentially, he said that radiation would not likely offer improvement, but would be something to consider to prevent the legs from getting worse.  We decided to keep radiation on the backburner among our treatment options.

Dr. Bonomi decided to have me start getting an Avastin infusion as a booster for the Tarceva.  Avastin isn’t a chemotherapy drug, but works with chemo drugs by cutting off the blood supply to the lung cancer cell and starving the cell.  I have only had two infusions so far so it’s too soon to tell if it is doing any good.  However, the tumor markers in my blood jumped significantly, which the doctor suspects is a reaction to the Avastin. 

In early May, I had a fall when I lost my balance on my walker.  At the time, everything felt and looked fine – no damage done.  But a few days later my left calf and shin and both feet swelled up to the point the skin was purple and blue and the tissue underneath it was rock hard with no give at all.  While I was at physical therapy later on, the doctor who works there looked at my feet and legs and sent me to the emergency room to have them x-rayed to make sure there was no fracture or tear.  The good news is there wasn’t – just a sub dermal hematoma (deep bruise).  The better news is there was no sign of a blood clot, which I’d acquired while in the hospital in March.  It’s the blood thinner I’ve been on for the blood clot that caused the delayed reaction of the bruising to the fall.  In spite of the blood clot being gone, I still need to get the daily blood thinner shots for another few months to make sure the clots don’t come back.

For this month, my feet have gotten progressively worse and last week, it took Doug and both of his parents to lift my feet from step to step going up the stairs.  I can’t feel my feet at all and have to be careful not to let one step on top of the other or trip as the tips of my toes get stuck on the floor. I got braces for both of my legs as part of PT to give me more strength and stability.  I think they make a little difference, but not a lot.  My “daytime” physical therapy finished yesterday. From now on, I am at “outpatient” physical therapy twice a week for 45 minutes each visit, still with the same PT provider organization. 

In spite of the outward problems I am having with my feet and legs, the MRI scan I had on Thursday of this past week showed stability in the meningeal lining of the lower spine and may even indicate a slight improvement in the amount of lesions there. Dr. Maurerwa, the radiation oncologist, sat in with us to look at the results of the MRI to the spine and we all once again agreed it wasn’t the right time to do radiation to the legs.  Dr. Bonomi decided it was time to add Tagrisso to the cancer treatment mix along with the Tarceva.  The idea behind this is that the particular medications in Tarceva work well for the mutations in the brain and the spine.  The Tagrisso medication has a lot of success with the lungs and other areas where the cancer has metastasized.  The hope is that, between these two drugs, all the cancer in my body will be kept under control.  It’s a new frontier in the cancer landscape so we are just experimenting to see what will work.

The fact that we don’t have a pre-defined path for treatment is disconcerting to me.  But I am glad the medical staff is willing to try new things to help me get better.

So that’s what’s been going on with me.  It has been a very challenging time and there has been some rough news to process. I’ve been given little hope by some medical practitioners that I will walk again.  But Dr. Bonomi still keeps that as a goal.  At least I got that going for me.

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.