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 

Hi, All - I'm back from seeing my oncologist in St. Louis for the trial of Sunitinib.  It went pretty well.  He's pleased with my reaction - side effects aren't too bad, white blood cells responded well, still a bit anemic but not too bad, blood pressure is OK.  I've been approved to go on with the next course of treatment, so I'll be taking Sunitinib for the next 4 weeks, then off for 2 weeks.  I'll go down for another check-up in July.  I'm having a little more trouble with nausea and fatigue this time, but nothing I can't handle.

I'll have a CAT scan after this 4 weeks course so we can see how the tumors are reacting to the drug.  If they're getting smaller or staying the same, I'll get to continue in the clinical trial.  I'd prefer that they get smaller, but not getting any larger or spreading is definitely a good thing!

In addition to being tested on patients like me who have metastasized thyroid cancer, Sunitinib is being tested on liver cancer and had some good results on that, so that's a hopeful sign.

All four of us went down this time.  We got to see the Cards win and did some touristy-type things like go up in the Arch and visit the St. Louis Zoo.   We got to spend some time with Sara's Aunt Rosemary as well.  She took the boys to the Magic House and they had a great time there.  (Rosemary is a brave woman to take on 2 redheads by herself!)  We went through Hannibal on the way home and saw some Mark Twain sites.  Visiting the cave he described in Tom Sawyer was fun.  Matthew had lots of theories about bats, spiders, and "cave geckos" that he shared in great detail with the guide.  (We should have tipped the guy - wish I'd thought of that earlier.)

Thanks for your continued prayers and good thoughts!

John

Hi, All  - 

My diagnosis is officially metastatic papillary thyroid cancer.  I got to see the films of my CT scan today and it shows tumors all through my lungs, but there's still a lot more lung tissue than cancer tissue and just knowing that makes me feel better.  It's also nice to know what you're up against.

There are 6 clinical trials that we're looking into.

The  two we're most interested in are using drugs that have proven successful with other types of cancer that they're now trying on mine.  These are also in pill form, so I have hopes that maybe I can do most of them in Lincoln.  Both of these drugs are tolerated well.

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=499848&protocolsearchid=3197011&version=patient  This one is in Lexington, KY.

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=502260&protocolsearchid=3197011&version=patient   This one has several locations, including Chicago, St. Louis, and Milwaukee.



The next most interesting ones both use IV drugs.  It's possible that this could be set up in Lincoln.

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=396783&protocolsearchid=31&version=patient  This one is in NYC.  It's trying to slow the growth of the tumors and maybe make them more suseptible to radiation therapy.

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=484383&version=HealthProfessional&protocolsearchid=3197011  This one is in Orange, CA.  It also is looking at the toxicity of this drug.  Not sure that sounds too interesting.



The last two are with completely experimental stuff.  That might make it less likely that something could be set up in Lincoln.

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=517391&protocolsearchid=3197011&version=patient  This is a pill and it's being tested in Wichita, which is certainly the closest place of any of the trials.

http://www.cancer.gov/search/ViewClinicalTrials.aspx?cdrid=433150&version=HealthProfessional&protocolsearchid=3197011   This is a fairly intensive IV treatment.  It's available at Mayo's, in St. Louis, and in Jacksonville, FL.  (Why isn't anything in Miami or Orlando?  or Omaha???)


I still feel good and that's the main thing.  My oncologist will contact the trials in the above order and will see if at least some of it can be done in Lincoln, with maybe only an occasional trip to the study site.  Insurance won't cover the drugs, but it will cover the parts of the study that are part of normal medical procedure (e.g., CT scans, IV administration, blood tests).  Some trials have travel $$$ for the patients and there are also Angel Flights that might be available if we go with something that's further than I might want to drive.

Talk to you all later.

John

PS  Let me know if this is more info that you want or need.