February Clinical Trial Update

Hi, All - I flew down to St. Louis yesterday for my 6-weekly exam.  I decided to try the local train/bus system rather than rent a car.  That went well, but it actually took longer to get from the airport to the hospital than it did to get from Omaha to St. Louis!  Got to have lunch with Sara's Aunt Rosemary, which was fun.  (She always knows the best places.)

 

I've been coughing up blood for the past few days, so I had to have a chest x-ray when I got down there.  Got the results this morning.  The x-ray showed signs of "mediastinal adenopathy".  This is scary way to say "swollen lymph nodes between one's lung under one's breast bone".  It's only an observed symptom and not a diagnoses.  It could be anything from cancer to AIDS to an infection to benign swollen lymph nodes.  To find out for sure, I'm going to have a complete body CT scan on Monday.  I get to drink a couple bottles of Barium dye for it.  (I hope it tastes better than some people say.)

 

It's hard not to be concerned about this, but I'm sure everything is fine.  I just had a head/neck/chest CT scan in January and that showed nothing.  My oncologist in St. Louis said it's unlikely there's been an explosively growing new tumor pop in up that time, so I'm betting it's just an infection and I'll get to take some antibiotics. 

 

I'll let you know the results of this new scan.

 

Thanks for your continuing prayers and support.

 

John

Hi, All - I went down to St. Louis yesterday for my 6-weekly checkup with the Sutent clinical trial and got some good news.   My CAT scan last week shows no new tumors and the existing tumors show no new growth.  I started on my 7th course of the drug yesterday and they have some new ideas to try with the side effects.

 

I found out a little more about the study as a whole.  There are only 50 of us in it nationwide.  (I had thought there were 50 of us in the St. Louis location.)  I'm one of the few men and I'm the youngest person in the study.  Most of us have shown good results.

 

The researchers are preparing a paper on the current phase of the study.  It will probably be presented this summer.  If it's accepted, the study may go into new larger phase.  I have hopes if this happens that my oncologist in Lincoln might be able to be part of it, or failing that, maybe a practice in Omaha will take part.

 

Thanks for your continuing prayers and support!

 

John

Hi, All  - I went down to St. Louis Monday and saw Dr. Needles.  Normally, I would be starting the next cycle of Sutent today, November 21.  Dr. Needles decided he wanted me to wait a week and try to get my feet healed up more.  I'll start my next cycle on Wednesday, November 28.  My next appointment with Dr. Needles is January 9.

Dr. Carlson, I have an appointment with you on December 4.  Normally, that would be 2 weeks into the drug cycle, but it's only 1 week into the revised schedule.  Please let me know if you want me to reschedule this appointment.

Hope you all have a Happy Thanksgiving!

John

Good News!

Hi, All - I went to St. Louis yesterday to see my doctors in the clinical trial I'm taking part in and got some good news:  There are no new tumors and all existing tumors are stable.  The best part is there was some shrinkage in the largest tumor in my lung.  They had some new ideas that might help mitigate some of theside effects of the drug, which I have to admit hit me pretty hard this last cycle.

I was all excited because I'd been seeing dark whiskers in my beard and mustache the last couple weeks, but they said that probably wouldn't continue while I'm on the drug.  Oh, well, men with white beards and hair are distinguished and universally revered for their wisdom and sex appeal, aren't they?  {I wish!  }

I'll continue with the cycle of 4 weeks on the drug and 2 weeks off, then back to St. Louis for a check-up and to get the next cycle of drugs.

I haven't checked email for a few days and see there are quite a few from some of you.  I'll try to get back to those of you I owe a reply to in the next couple days.

Thanks for your continued prayers and support.

John

Latest St. Louis Trip

Hi, All - saw the oncologist in St. Louis yesterday.  Not a whole lot happened - poked, prodded, asked embarrassingly personal questions.  They said things look good, side effects aren't too bad, blood chemistry is good.  They're still surprised that I'm not feeling more pain or breathing discomfort, but, all things considered, I'm really not.  

I'll have another CAT scan here in Lincoln in about 5 weeks.  That'll show if there's any shrinkage or new growth, so keep your fingers crossed!

Thanks for all your prayers and support!

Talk to you later.

John

Update

Hi, All - just wanted to let you know that I got good news last week when I visited the clinical trial site.  After only 2 courses of the drug Sunitinib, the 2 largest tumors in my lungs have shrunk slightly and there are no new tumors!  The doctors are very excited and (needless to say) so am I!  It sure makes it easier to put up with the side effects when you know it's doing you some good.

This is a definite success.  For purposes of this clinical trial, success is no growth, so the fact that there is shrinkage is gravy.

I've started the 3rd course of the drug.  After 12 weeks, I'll have another CAT scan and we'll see how things are going then.

Thanks for all your prayers and support!

John