Goodness me Paul. Drama follows you. Yes the steroids will definitely increase your blood sugars. You will probably need to increase the insulin while on the steroids. Of course, higher blood sugars are a wonderful environment for yeast, they love it. A vicious circle all right. I am really quite impressed by how you do manage all this. It's a case of having too isn't it.
Do You take Beta Blockers to control your heart rate? They also help with BP control. I'm sure the cardiologist has this all under his watchful eye. When is the dobutamine stress test? All ensuring that you have good coronary blood supply. Unfortunately diabetics are all prone to cardiac issues as well, but I'm sure you know all this.
I hope the neuropathy does not get any worse, and I curse your health system where you have to make do due to cost.
Take care, keep warm,
Tammy

The Hospital at the University of PA (HUP) also has proton therapy. I am three weeks in. Proton, as we affectionately call it, has not been tested in head to head with IMRT but anecdotally and logically it has less toxic than photon therapy. Mainly because there is less collateral damage to non-target cells. The beam is tighter and can be more precisely focused. The beam drops all of its energy at the site determined by the treatment plan and does not pass through the other side.

I wouldn't say Medicare is pushing it so much as is willing to pay for it. I am at 15 of 33 Gy and generally feeling ok. My mouth is painful, I have thrush and swallowing is becoming a problem. But my energy level and appetite are good and I still have some taste left. There is no apparent damage other than a bit of skin reddness at the radiation site.

I'd be interested in knowing how this compares to someone receiving IMRT.

Thanks Tammy. I don't remember as much with the chemo brain and carb fog lol. I didn't know the name of the drug, now I do, used for the stress test, which is scheduled on January 24th the same day as radiation and chemo. I think I'm going to reschedule, and ask my RO his thoughts if it creates more pressure on my carotid artery stubs, which is where my radiation is directed at. I take a low dose Bp medicine, Amlodipind, prescribed by nephrologist, so it may be kidney related too, and was like this before my recent surgery, except for racing heart.

My RO gave me a prescription for nystatin, swish and swallow, for the thrush, and nurse gave me samples of NeutraSal (Supersaturated Calcium Phosphate Rinse), a FDA reviewed product, indicated for the treatment of Xerostomia (dry mouth) and oral mucositis, and signed me up for the direct access program, so I should be getting more delivered. It's a little powder, pretty tasteless, to be mixed in a cap, swish and spit 2x.

As far as Protons vs IMRT, Protons takes longer to set up. My first round of IMRT in 2011 was bilaterally, from bridge of nose to the shoulders basically, 17 zaps, and took 17 minutes from start to finish. With Protons, I'm getting two locations, and this usually takes 30 minutes, but the zaps you it really don' hear, but some slight clinking in the background. The mask is the same, some UFO looking contraption hovering over your head, is the same for both. Also, there are not many studies to compare IMRT to Proton Treatment. In fact, from my understanding, there is no need for any clinical trials like chemo needs to have before FDA approval, and medical technology just needs to show it works just as well or better then the current technology, under 510(K) to get FDA approval. There are newer Proton Treatment machines being approved that have less footprint than the larger gantry type. Mine is a smaller incline beam proton machine, although they have two other types, flat beam, and large gantry, all using the same protons.

Yesterday, my glucose shot up again after the decadron infusion, aka prednisone, to over 600. It was so high it only registered Hi on my two glucose monitors, meaning it's over 600, and doesn't read anymore. I had to inject myself with short and long term insulin all day, night, and It's down to 422 now, still high. I'll see what my radiation center says, and didn't want to miss a day to go to the ER, but have the weekend off in a few hours to decide.

Oh dear. Had your team not thought of the repercussions on your blood sugars.
Would it be possible to get them to do what we call a sliding scale of insulin ?
So that the amount of insulin you give depends on your blood sugars. Use your normal long acting, but if your sugars are high give a rapid acting like Novorapid to quickly reduce the BSL. For example, if BSL 6 - 10 use 4 units Novorapid, if 10 - 16 give 6 units, if > 16 give 8 units. I'm sorry but we use different blood sugar measurements here. Normal is 4 - 6 for us. We would get you to check your sugars 4 times a day. Before and after meals and last thing at night.
Whoever manages your diabetes must be able to come up with a plan Paul.
Hope you get some help with this.
Be careful and take care,
Tammy

Thank you Tammy. I use both the short term insulin, Novolog, 4 units, and long lasting, Levemir, 10 units, although was using lantus for years, but insurance doesn't cover that anymore, and I do use some sort of sliding scale when my glucose is high, but this did hardly anything to lower it from the decadron. My oncologist just prescribed Glipizide, so will see if this helps. I was able to bring it down to 350 this morning, but I do have another, and final decadron infusion on Thursday again. I used to see an endocinogist, prior to cancer, but will all my other doctors, recurrences, treatments, I never went back, and his wait time for an office visit is 6 hours lol. I did get the insulin pump from him back in 2009, which was supposed to be started after my induction chemo, but things didn't go well with chemo, and I get recall notices for the uninstalled insulin pump, so maybe things worked out. Basically, my PCP, other doctors, somewhat manage my diabetes, prescriptions, but should see a endocrinologist, and manage it better myself.

I do have an early radiation graduation party on the 22nd of January being my last day of treatment is the 29th, hate celebrating before completion, somewhat superstitious lol, but it's a nice catered luncheon once every few weeks, with prior patients invited, short speeches, and certificates being given to graduating patients in their beautiful lobby floor with fireplace, two story ceilings, leather furnishings. On your last day they do play the theme song to Rocky, "Gonna Fly Now", staff, whoever is waiting for treatments participate in congratulating you. I guess I didn't do bad, so far, for someone who was told I stood a 20% chance of bleeding to death from my carotid artery stubs from this treatment, and can't wait to punch my mask like Rocky!

I mentioned NeuraSal (Supersaturated Calcium Phosphate Rinse) prescribed to me, and works well, and use it instesd of the salt water, baking soda rinse, which I always disliked, and it cleared up my mucocitis, dry mouth, and able to eat better now. The company sent me my refills, express mail, for a month or so, and a complimentary bag containing dry mouth gum, with Xylitol, and sore throat relief lozenges, cherry flavor, not that I have any taste these days. I did look into the NeutraSal, and found positive findings, and an article below from Oncology Nurse Advisor, if it may be of interest to anyone.

http://www.oncologynurseadvisor.com...-head-and-neck-radiation/article/290850/

Paul,

Amazed.

That's the word that fills me each and every time I see anything from you!

I'd say take care but I know you are like a cat...and an entire medical team.

I share superstitious perspectives with you. I remember in college taking advanced open water cert and we chartered a 55 ft motor sailer out of Miami and lived on it for 10 days, scuba diving the Bahamas. We got our grade about 3 wks before the trip. I was only thinking, not really worrying about what if that jinxed our trip. We were almost 100' down and I looked over at something touching my shoulder. It was the Divemaster asking for air! We shared and he emphatically motioned to surface now. As I went through (safe) ascension all I could see was those huge eyes through the mask looking at me. I surfaced, gave the all clear and heard people screaming orders. They were yanking everyone out, frantically ripping off gear and even throwing tanks below.

I put in a shirt that said "I Survived the Devil's Triangle". The captain grabbed me by the shirt, pulled out a knife and cut it off, tossing it in the water and screaming expletives at me. I was almost in shock as I looked over and saw two huge water spouts bearing down on us. As a male, I of course grabbed a camera and started snapping as the rest were getting in. One was so big and so close you could actually see fish coming up on both sides of the bottom of the water spout. I took a roll and actually caught both of them next to each other. I even won a weather photo contest with that picture!

Bring it on home Paul! You are the greatest!

Ed

"them" = whales? sharkies don't spout water. what kind of whales in the Bahamas? Here along the Pacific I know about whitey and all the whales, etc.

Paul - glad to hear things are progressing and tracking well for you.

Thanks Uptown, Don. Good point with the shark. Dolphins spout, and out of curiosity, I looked up whale sightings the Bahamas, and they do occur. Up here in the North East we have them.

After a wild night, I am struggling with vision and processing so give me a pass guys...till noon at least.

Don, I think you are asking me about the water spouts. If so, here's my answer...if not...never mind.

The water spouts I refer to are tornadoes on the water. One was a rope and the other fairly large with water flying up on the sides of where the spout was touching the water. Out of 30 snaps or so, I caught them both crossing. It is a lovely photo. I used 4 rolls trying to catch the sunset after the storm as it was between the masts of the boat. I thought it would win the contest but I entered the water spout one too just because I thought it was cool. Apparently the judges did too.

I will have to scan the photo.