Long day. radiation and a Dr Dilling appointment this AM. They took pictures yesterday and they liked them. They don't like PT scans that much at Moffitt as a followup due to false positives. That's how I had throat biopsies, that were a false positive on a PT scan. They use CT scans and if something looks funny, then a PT scan. This limits false positives, saves money (insurance mandate) and limits radiation exposure. If you are not feeling, right, they will do them. Since November 2013, they have seen no PT activity. I had 1 in November 2013 and 1 in January 2014.

Everything is stable and I am feeling better by the day. If I miss a Mestinon dose, I hit a wall. They told me to not be afraid to take an extra dose if I need to. I am hoping the LEMS will completely recess but it isn't looking like it. It may be something to deal with the rest of my life.

After doing some research, I have found Myasthenia Gravis, LEMS and get this, Muscular Dystrophy very closely related. The MDA site is full of info about how these may be related. The medical field has long suspected this in research but have not yet to give a conclusive theory as to why or even if it's true.

I got kind of chewed out by the nurse, Oxy, I have two types, one long lasting and one for a boost, are to be taken on schedule. Now because of osteo-arthritis and bone spurs in my hip, they want me to take Naproxin (Aleve).

Dr Dilling was showing me a reduction schedule for the steroids I'm on for side effects of the PCI. I was looking at questions on my iPad and he said look here at this sheet and put that down for a minute. He was laughing his butt off at me.

Holy crap, the 60s all over again, fun, fun.

Half way through PCI. Things are going good since they put me on a Steroid to control brain swelling and the associated nausea. Trouble with that is a glucose reading of 150 and above is common. I'm supposed to give blood for a 3 month Diabetic checkup. It shouldn't bother the A1C much unless I'm on it too long. 

I think we will be going out to Bonefish Grill tomorrow to celebrate. :-)

This PCI crap is for the birds. Monster head ache and queazy on Monday. On Tuesdays we met with Dr Dilling, he said it is swelling in the brain gave me some steroids and they are working as far as the head aches and queasiness go. With 3 of 10 treatments done with, I hope this stuff is over with, sooner the better. This is a preventive treatment. There has been no evidence of Cancer since the first PT scan in November 2013. Another scan was negative in January 2014.

We met with our new Doctor. He spent about an hour and a half talking me and about an hour to Irene, including physicals. Young and seems knowledgeable enough, Dr Louis Contreras in Brooksville.

Irene's grandson Jake is coming for a visit the end of April. Should be fun, he's 19.

I had my Prophalactic Cranial Irradiation (PCI) simulation today at Moffitt. With the treatment the chances of the cancer reappearing in the brain is 20 - 25 %. Without the treatment it is a 60 - 65 % They make a plastic screen mold to go over your face and then fasten to the table. The actual treatments take about 3 or 4 minutes per session. 10 sessions in all. Then hopefully I'm done with treatments, FOREVER!!

We went back to Moffitt today for a MRI on the head. Small cell lung cancer likes to metastasize to the brain. This test showed no cancer activity. We are now planning on a preventive procedure called PCI or Prophylactic Cranial Irradiation. Without this procedure there is a 65% chance of metastasis to the brain, with this procedure, the chances drop to 25%. It is a 10 day low level radiation to the brain. This will probably start in early April.

The word from Dr Padhya is that NO cancer was found in the throat. Wonderful news!

Long day, up at 3:30 am, off to Moffitt for the biopsy. Dr Padhya tested several spots in the throat. His feelings are none of them looked Cancerous. Formal test results in a couple of days. They sent me home with some good stuff. They aren't stingy with the pain meds, that's for sure.

Things are looking better by the moment. Appointments through May, bummer, stuck in Florida until at least June. Whoa is me... :-)

Visit with DR Tan, Medical Oncologist, today at Moffitt. We compared the PET scans from October 2013 and January 2014. He said the cancer is gone. The radiation will continue to work for another 4 or 5 months. He also said that he had talked to DR Padhua, Neck and Head Cancer Specialist, about the throat and they both feel it is not cancer but would like to confirm this with a biopsy.

He also wants to do pre-emptive radiation to the head because small cell cancer likes to go there. It is a short course of 10 days and a low level of radiation.

It's too early to say the cancer is gone for good but this is sure as hell a step in the right direction. Negative tests for 3 years would be a better indication of a cure.

Well, here it is February 26th and radiation is finished, for now anyway. On the most recent PET scan there was a small uptake on the base of the tongue. This is new, and may be an anomaly or cancer. We will find out next week, the oncologist said it is rare but not uncommon to see lung and throat cancer at the same time. He is pretty amazed on how I do with treatment, he said, 'we'll treat that also, if that is what it is'. He did finally talk me into Oxy for pain.

I am also having a sciatic episode going on from playing the second round of golf since last August. I've had them before, so I know what they are like, not pleasant. I am having a CAT scan tomorrow on the hips to clear any thoughts of bone cancer.

I went and saw an excellent Chiropractor this afternoon, he also thinks it is the sciatic. He also got it to pop back in. Sore but feel much better.

I won't be interrupting my treatments this year to come back to Michigan. We will stay down here until it is done.

Radiation will start on February 5 2014 and run for 3 weeks. The first week they will schedule a biopsy for the throat. They said it is about a 15 minute deal, an in and out thing.

I guess if there ever was good news about cancer, this may be it. We just got back from Moffitt and they are looking at what they call a spark at the base of the tongue on the last PET scan. They did 2 scopes by 2 different Doctors on my throat looking at the sparking spot. So far this doesn't include the voice box and it seems clear by the eye. They noticed an anomoly at the base of the tongue. They don't seem to be in a big hurry to test it and may wait until my lung radiation is done. I don't know what the course will be, more chemo and radiation or just radiation. They aren't even sure if it is cancer but want to investigate it so they will know whether or not to ignore this spot in future scans.

I had a CT and PET scan on Monday. The results weren't what I was hoping for. We had one nurse tell us the usual therapy is 30 days of twice a day 6 hours apart, 5 days a week, 6 weeks total time excluding the weekends when they don't do radiation. Another nurse mentioned maybe once a day. Then Dr Thomas Dilling came in and stated the treatment will be 15 days, once a day, 3 weeks total time lapse. Each appointment is about 45 minutes long with 10 minutes on the table. They first have to make a mold for me to lay in and put tiny tattoos at the focal points. We are waiting for a phone call from the scheduler to get this done. There are some lymph nodes (3) in the middle of the chest that are still inflamed. They are going to hit them along with the area where the tumor was at. Here's the deal, with chemo there are microscopic tumors left behind. The chemo does a great job of shrinking the tumor(s) but it takes radiation to kill them off. After the treatment, I will need to get a CT and PET scan every 3 months.
The unexpected development was a flash on the PET scan in the back of the throat. He did a digital exam and could not feel anything. He said I did a good job of not gagging because he went pretty far down the throat. He said it could be a false positive from me coughing (which I don't remember doing) or even a swallow during the picture taking.  He stated that it is common for smokers or former smokers to have lung and throat cancers at the same time. They are different types of cancer and do not indicate a spreading of the lung cancer.
This is going to be a protracted fight.

Things are popping down here. CT scan at 2 PM and a PET scan at 5 PM Monday. They want it done before the appointment on Wednesday with the Radiologist Dr Dilling. I was told a Medical Oncologist will be assigned to me also. They operate the same way as UofM. The medical oncologist will be the primary care Doctor for the Cancer treatments.

At home in Florida. All of my Doctor appointments are set up for here in Florida. Radiation will be here in Florida at the Moffitt Cancer Center, highly respected and about 1/2 hour away. It is a part of the University of South Florida Medical School and allot like UofM. Dr K set everything up through his contacts at Moffitt. I have a specialist in early stage small cell lung cancer, DR Thomas Dilling. The action starts January 15th. Feeling pretty good but taking it easy so far.

Day 2 is done, love the in and out compared to the first day of each round. Already have a Moffitt Doctor lined up thanks to DR Gregory Kalemkerian and his staff. 
DR Thomas Dilling, http://www.moffitt.org/meet-our-team/our-physicians/thomas-j-dilling-md

Good day overall.
Blood draw at 10:15 AM, Meeting with Dr K at 11:15, then things slowed down a little. Some old hag told us we were too early to check in for infusion. We were there at 11:15 AM and the appointment was at 12:30 PM. Picky, picky, picky. We knew we'd have to sit awhile, we or I am used to that. We then walked to the other end of the Cancer Center and then into the Radiology Records Department and got my scans and xrays to take to Florida. That passed enough time to register for infusion.

At the Dr K visit he was very receptive to my getting radiation treatments at the Moffitt Cancer Center on the north east side of Tampa. It is allot like the UofM Hospital because it is a part of the University of South Florida School of Medicine. As a research hospital it is very much like UofM. Dr K even knows 2 radiologists at Moffitt, DR Stevens and Dr Shridhar. He is going to talk to Dr Stevens and set things up, scans and treatment. I have found an affiliate in the New Port Richey / Brooksville area, closer yet.

Dr K had a long talk with me about how some radiologists recommend a preventive radiation treatment to the brain. He advised against it for 3 reasons, it only has a 5% benefit, it could cause more neurological damage to someone with a neurological problem to start with and my age.

Of course we ate at the Broadway Cafe. Cheese Steak Hoagie for me and soup for Irene. Turns out the soup is not chicken but beef broth, scallions and whipped eggs drizzled into the hot broth. Simple enough and really yummy.

Two more short infusion days coming Thursday and Friday. We may try to leave Friday afternoon and drive for 8 hours or so. FLORIDA HERE WE COME!

Appointment with the Neurology Department at UofM, Dr Jason Wong.
Of the 2 types of Eaton-Lambert (or Lambert-Eaton), I have the one that is usually brought on by a small cell lung cancer tumor. Treat the cancer and it tends to clear up fairly quickly. There are some other treatments that may help and they are being saved as future treatments, if needed. If the current treatment of Mestinon and Chemo do not work well.
They can include some plasma work, more IVIP and an experimental chemical called 3,4 DAP. These are used almost extensively for long term treatments. I was given 5 treatments of IVIP while in the Hospital at UofM.

The lead Doctor is thinking I won't need long term treatments and has agreed to wait a while longer.
They are thinking I should be back to doing most of what I want to do in 2 months or so.

Testing went very well, strength is coming back, reflexes have picked up. The reflexes they were very happy about.

November 27, 29 30  I will append this post for all 3 days.

November 30

Another quick day, not very crowded at the UofM Cancer Center. 
I asked the nurse if this treatment is considered an aggressive form of chemo. She said 'Yes!' I thought good, you either cure me or kill me, it's that simple. So far, it seems to be working. I'm a little weaker after today's treatment. Probably from getting up repeatedly last night to go to the bathroom. Chemo tends to try and clear out in 48 hours after it is administered. I guess you know what I'm doing until Monday Night!
(allot of pee'in)

We went back to the Broadway Cafe today afterwards. Irene had her soup and mine. I am definitely going to get a good recipe for Korean Chicken Soup, simple, but really good. I changed it up with sweet and sour chicken. It was more than I could eat and now have my dinner planned. Seems like everything comes with KimChi, like it or not!

November 29

Uneventful chemo session this afternoon. It went very well. I walked in and walked out of the session and it actually felt better than riding in a wheel chair, very invigorating! 
Afterwards, we went to the Broadway Cafe, Irene had chicken soup and I had the full BiBimBap dinner. Very good Korean food and yes, I had me some Kimchi! 
A primer on LEMS - http://en.wikipedia.org/wiki/Lambert%E2%80%93Eaton_myasthenic_syndrome

November 27

Chemo round 3 has started, 2 infusions today, 1 Friday and 1 Saturday.

The visit with Dr Gregory Kalemkerian and fellowship Dr Elizabeth Davis went well today. He said all numbers were in range and they seemed happy about it.  Of course, this is encouraging, but we really won't know much until the next scans, probably in January. This first scan after one round of chemo showed no cancer activity. 

I forgot to ask the Doctors about elevated heart rates after chemo. This morning it was 85, tonight 115 but has dropped to 108 - 112 after taking some Ativan. Vicodin works really well to lower it but I will wait until just before going to bed. I have sent a message to Dr Kalemkerian's office with this question.

The plan is for 5 to 6 weeks down time between the 4th chemo and the start of radiation. Some scans will be done in this down time period. 
Florida here we come, hopefully before Christmas. He kept saying that they will work the schedule out to our liking. We kept saying we will like anything they want to do and on their schedule. Our priority is to treat the cancer the most efficient way possible. He smiled about that, allot. 

The ride down to the Hospital in Ann Arbor is 111 miles from our drive to the parking ramp, 1 hour and 59 minutes. 

Afterwards, we wanted to get some BiBimBap, a Korean dish popular in Ann Arbor, but we tried to beat the rush hour traffic out of town instead. I guess 3 PM is too late a start. We got caught up in it but not to a dead stop. The traffic going into Ann Arbor was backed up from 14 along 23, then 96 all the way to Lansing. It looked really stressful.

Another argument with BCBS. They didn't want to pay for a BiPap machine. UofM Medical, UofM Sleep Disorders Lab, Sparrow Medical Supply and I against BCBS. We ended up winning after playing their silly games for 2 days. New Bipap, mask, hose, etc came home with me this afternoon. 

I am thankful to Sparrow Medical Supply and UofM Sleep Labs for doing battle with the bureaucracy known as Blue Cross Blue Shield. Thanks to them, especially Sparrow Medical, I have a new sleep apnea machine. Instead of a cpap, I now have a BiPap with settings comparable to what UofM CCU used to lower my co2 levels. The Respiratory Supervisor even hung up on them at one point during the argument.

Persistence pays off!

This is a complaint letter I wrote to Genesys Healthcare on November 2 2013 about refusing to admit me for breathing difficulties.

"I understand why there is a copay for ER visits with no admission but you nearly killed me by turning me away recently.

On Oct 10th, I visited Genesys ER with breathing problems. Someone decided not to admit me.

On Oct 11th, I was admitted to the University of Michigan Hospital with breathing problems which were quite severe. I was under respiratory failure with high co2 levels in my blood. I spent 1 1/2 days in the Critical Care Unit and 4 days overall in the hospital. Doesn’t sound like I should have been turned away now does it?

I do, however, give Genesys credit for finding small cell lung cancer in an earlier admission. Further treatment and testing at U of M has determined that the cancer is isolated and the prognosis is promising. I will have my second round of chemo the week of Nov 4, 2013 with 6 weeks of radiation to follow the chemo.

I will continue my treatments at the University Of Michigan Healthcare System and pay this copay under protest."

I just got off the phone with an complaint investigator from Genesys, seems an inquiry has erupted over this letter.

Hmmm...      ;-)

I finally got a test results letter from the UofM Sleep Disorders Lab.

They did a retitration on November 3rd. The results were inline with what my Oncologist expected. They are recommending a BiPap, humidifier, a wedge pillow and to sleep on my stomach or side. 

I currently use a cpap with a setting of 14. The bipap will be set at 25/16, big difference, but that was also the setting that they used in ER to get my co2 down. 

Tried today to track down the order and who the supplier will be. The letter also stated that I would be contacted in a few days to make arrangements for equipment delivery/pickup.

I hope I can finally get a good nights sleep with the new equipment. I've had so very few since Oct 3rd. I would imagine this is mostly anxiety and stress. I need stronger anti-anxiety/depression drugs! Xanax makes me jittery, go figure.

Note to self, don't eat too much before chemo. I was hungry and had 2 fish sandwiches on the way down to Ann Arbor. I didn't get sick, just a little queazy. I little snack is acceptable but a full stomach isn't a good idea.

Eating afterwards hasn't bothered me. A lot of this could be stress. Three days in a row the timing is off, late getting in the chair and hooked up anywhere from 45 minutes to 1.5 hours. We talked to the nurse and she said the only ones that are usually on time are the the early appointments.

I guess I have to chill out a little.

Why is it the chemo nurses are always worrying about constipation? HA! Not me, just the opposite and so far one short bout with it. Clean up aisle 7....lol

So far so good, everyone looks at me weird though, I don't use the heated blanket, it goes to Irene.

The first is carboplatin then etoposide. The second and third days just etoposide,   Anti nausea drugs 20 - 30 minutes before starting.

So far so good, I am getting stronger everyday and walking farther.
I plan on no wheel chairs at the Thanksgiving weekend chemo. Maybe the wheeled walker loaned to me by the family.

After this is over, it's radiation, 6 weeks, 5 days a week. I hope that goes as well.

It's pretty much automatic now.
God has let me know, 'We got this'!

Diabetics take note Etoposide and maybe all cancer chemo drugs screw with you sugar. When I got home at 6 PM 301, at 1 AM 134, eventually it comes back down.

Sleep study consult with Dr Swetha Voddi MD Sleep Medicine Fellow.
Explained to her what has happened so far and that Dr Kalamkarian thought it would be a good idea to change to a BiPap machine due to the co2 problems.

Appointment set up for November 3 2013 at the UofM Sleeps Disorders Lab.

November 3 2013

Slept fairly well until the Ambien wore off, then it was in and out the rest of the night. No report was given but I do have a follow up with Dr Voddi on
February 14 2013 @ 3 PM.

I could have swore that I woke up a couple of times and the machine was in BiPap, guess not.

Must not be urgent.