St Louis results

My visit with Dr Van Tine in St Louis went well.  He was enthusiast about my participation in this study and the wheels are now turning to get me entirely in.  We discussed this study and other possibilities.  The staff was great and the office was efficient.  

This is a small study with less than 100 participants in the nation and only 40 at this facility.  It opened only 2 weeks ago and I was lucky to get in.  It was incredible timing for Highland to call during the tiny window for registering.  Dr Van Tine said a slot was reserved for me when Highland called and this was one of th last slots.  He also spoke of the telephone conversation with Dr Iyre.    Dr Van Time was impressed with Dr Iyre and  said Dr Iyes cared a great about my case.   It is always good to hear that people care.

During my visit I had blood work taken, a fresh CT scan, and a fresh EKG.  It was all in the same building but on different floors.  Barnes Jewish Hospital is affiliated with Washington University School of Medicine.  The campus of building is huge and beautiful.  It is away from downtown and you see it was from several miles away.  I was surprised by the ease of driving to the building which I needed.  We used the valet parking, which was a mild disappointment because if you don't tip they point the AC vents at the drivers face and adjust it to blow on high.  This was not a good surprise.  Not harmful but annoying.  

Back to the treatment.  If my tests are ok I am deemed worthy then I am in.  I hope to know soon.  My next appointment  is June 3rd.  This will include more examination and probably a few (4-5) needle biopsies from my lungs.  The exact method will be determined by a thoracic surgeon.  Dr Van Tine said this is normally a outpatient procedure but could be an overnight stay.  This is for a pre-treatment sample.  Another biopsy is needed every few months.  Treatments for this study are once every 3 weeks.  The treatment is done via IV with nearly the same pre and post procedures as in Houston.  I am excited about driving to St Louis once every 3 weeks as opposed to Houston every week.  That's as much as I know.

What now.  It's time for a real vacation.  I am planning with April and Terah to take a trip next week.  I want a beech with clear water and which accessible to a guy with one leg.  I also want it be somewhere I've not been before but I am limited to the U.S.  I am looking at Florida, Virgin Islands, the Keys, etc.  Much depends of when Tersh can take off.  I am looking forward to this.  I am open to suggestions.

It is Friday and I am nearly home from the drive to St Louis.

Take care, everyone.

I feel it is a good day.

We stayed in Shreveport, LA last night.  It was in a casino/hotel on the river.  The room was nice, the food was good, and the casino was clean.  It was not my preferred style of casino and it was not wheelchair friendly, but was clean and the people were very nice.  Today we finish driving home with a stop in south Arkansas so we can visit family.

The chest X-ray was negative for broken bones.  Dr Iyre said my lungs sound clear, which is good, but I still have the nagging urge to cough.  There are a few possible reasons and I will follow up with my local doctor.

Today includes a stop in Little Rock at the UAMS pathology department.  I will pick my 'slides' from my tumor removal last August.  Apparently it is unusual for a patient to pickup their own slides.  The doctor's nurse told me it wasn't possible. I spoke to the pathology department directly and the person had to check a few things.  The person in pathology called me this morning to say it was ready for pickup.  I guess there are no rules against it.  Good for me.

We left Shreveport about an hour ago.  It was cloudy and gloomy as we drove away from the hotel.  We're currently driving north on highway 79 and the sun is fighting its way through the clouds. The road is clear of traffic and feels like it will be a good day.

I'll end with that.

Houston treatments are done

Monday, May 18, 2015 8:00am

I set in a hospital bed in Houston, Texas waiting for my next treatment.  I have an IV in my arm and my blood is away in the lab.  This time gives me an opportunity to think about the events of last week.   It had ups and downs and turns.

My treatment last week was frustrating.  It all worked out, but it was a long two days.  Read more in last week’s blog (http://aboutdamonsleg.blogspot.com/2015/05/time-moves-slow-slowlt.html).

Later in the week we celebrated Thirsty Thursday with an evening visit to The Rail and Club Frisco in Rogers, Arkansas.  Jeff, Staci and I spend a few hours talking and laughing and being friends.  These nights are refreshing.  The alcohol doesn't play nice with my Lyrica, but I manage it.

Also on Thursday was a series of telephone calls with Barns Jewish Hospital in St Louis, MO.  They have a drug study which has some great possibilities.  

Trial in St Louis, MO: https://clinicaltrials.gov/ct2/show/record/NCT02301039?term=nct02301039&rank=1

The current treatment (at Houston Methodist) shows only minors improvements so we are looking for another.  Everyone involved at Houston Methodist is wonderful and I recommend this facility to anyone fighting cancer.  It has not worked for me, but it may work for the next person.

Last week also held a pancake breakfast.  My friends at work organized a pancake breakfast to raise money for my fight against this cancer.  I will not post the amount raised, because I think it’s in bad taste, but it is enough to make a big difference.   It is humbling to receive such generosity from others.  I consider myself a servant to others so receiving this has me speechless.

11:00am

Dr Iyre visited and we discussed the St Louis study.  He seemed enthusiastic about it and he will call the nurse coordinator with details from this study.  In fact he is canceling today’s treatment so my system can clear of this drug so I can start in St Louis sooner.  He also ordered a fresh chest x-ray, which brings me to the next topic.

I cough a lot.  The doctors manually cleared my lungs a few ago because the tumor intruded on a bronchial tube and blocked more than a quarter of my lung capacity.  Breathing was wonderful after that procedure.  Slow but surely my cough has returned which may or may not be because of the tumor.  Occasionally I cough to the point that I injure myself.   Most recently I pulled or tore something in my right side.  Coughing and sneezing is very painful because it flexes those muscles.  The chest x-ray will reveal if I have broken something.  Hopefully not.

Lastly, April is working on her passport.  I am between studies so it is time to take a vacation.  The original plan was to visit the Passport Agency in Hot Springs but April discovered that there are no appointments available for at least 2 weeks.  Getting a replacement passport from the local post office take the same amount of time so we’re going with that.  We may stop in the Hot Springs area so we can visit with family. 

That is enough for now.  Houston is done.  Hopefully starting in St Louis soon.  No word from Bethesda, MD about their study.  I have a few weeks without treatment so it’s time to take a vacation.

Thank you for reading.  Please comment and let me know if you have questions.

Time moves slow slowly

It's another day and another treatment in Houston.  This morning my start was delayed when my nose began bleeding as we prepared to leave the hotel.  My nose bleeds frequency is staying consistent, but it is still very annoying.  At least it is consistent and manageable.

Nothing has changes in the last week, but  many possible changes are pending.  I have an appointing with Dr Travis (Highland Oncology in Fayetteville, AR) on May 13th and I have an appointment with Dr Iyre (Houston Methodist) on May 18th and I continue to email with NIH in Bethesda, MD. Many possible changes are on the horizon.

As for myself I am growing tired of all of this.  I plan to continue, but it is tiring.  April and I have crossed words more than once about this or around this subject.  Our funds are limited (as with everyone else earth) so we can only afford to do so much.  The rooms are good, but we don't stay in any 5-star hotels.  Money is mostly dedicated to travel and time is almost completely dedicated to treatments so there's not much left for general fun.  Fun for me is being outside.  i.e. gardening, fishing, camping.  Weather and travel have eliminated this, which just adds to my stress since my normal outlets are gone.  Maybe I can start doing some things after the spring stormy season has passed.

April and I did spend this past Friday evening and Saturday in Branson, MO with my parents.  We watched a troop of Chinese acrobats which was nice.  I was tired and I drifted off for a minute, but April nudged me.  We also ate at a place named Whipper Snappers which had a Seafood buffet.  It as all-you-can-eat crab legs and lobster and other stuff.  The crab was good and the service was good and the floor was slippery.  I used the wheel chair.

My dad is with me during this trip to Houston.  We left from Branson and drove to Houston.  Google said it was no took 10.5 hours to drive the distance and it took us 10.5 hours.  We don't wastes time when er travel together.

No treatment today

One more item on the long list of frustrations.  I was not treated today. 

I arrived at the hospital at the normal time which was much to the surprise of Andrea the nurse.  She had no orders for me.  Some logistic confusion caused my names removal from the participants list.

The coordinating nurse Catherine is working to have my name added back to the list but I will not be treated today.  I expect a treatment tomorrow which means we are in Houston for another night.

Back in Houston

Here I am back in Houston.  It's not my favorite place, but it's where I need to be.

I spoke to Dr Iyre late last week.  He believes the treatment is at least helping so I should continue this until something better is found.  It's a little embarrassing because we said our goodbye to a few people and now we're back.  It is what it is.

At this moment I am sore and tired and getting ready for another treatment.  I hope everything is still ready for us at the hospital.

This trip we drove Aprils car to houston.  Last week, while we were in Houston with my truck, we spent $3500 to rebuild the transmission in the car.  This is its maiden voyage and it drove well.

I am thankful for the doctors and the nurses and the hospital and my family.  Yeah.  I am back in Houston.

Movie Time!!!

I am with April and Terah and Patrick seeing the new Avengers movie today! 

I want to thank Amy for this.  The world is full of wonderful people.