And so my Journey Begins . . .

5 Mar 2023 Update: Good news - Did my blood work Friday and my white blood cell count has gone from 1.8 to 7.3 in two weeks. Bad news - Got a sinus infection from the grandkids a few days ago. Not much fun right now. Other than that things had been going great. I'm eating foods with no problems (swallowing is fine) though sticking to basics until sense of taste comes totally back, about 30% of the mouth right now. So it's eggs, pasta, and fish for the most part. The other 70% is ok cause it tastes neutral rather than horrible which is a step up. Saving all the good stuff until I get more back and I do have a list! All the phlegm had gone until the sinuses kicked up. Using the Navage and mucinex dm on it. Next appt is on the 13th with the radiologist . . . .

13 Mar 2023 Update: Had my first follow up Radiologist Onc visit since radiation ended (Jan 24th) today. My usual rad onc, Dr B, was on vacation with his kids so I had it with another rad onc, Dr G. In the "It's a Small World" category turns out Dr G was the guy that did my testicular cancer stuff back in Apr of 2001!! Anyways, they (Rad Onc and Rad Nurse) are very happy with how it's going. I'm eating solid foods (rotisserie chicken, pulled pork, cheeseburgers, etc) with no swallowing problems or pain. Can't ask to be doing better. That sinus infection did kick my **** though. Still getting over it, mostly a little dry cough at night just to screw up sleep now. Going to make my first follow up with the ENT tomorrow as he becomes the most important doctor after the PET scan is done on Apr 13th. Overall no complaints, it's gone very well. Anyone have any questions please ask or message me.

21 Apr 2023 Update: NED, no physical evidence of the disease upon examination or imaging test after treatments !!! Had my PET scan last week and my Oncologist and ENT visits today. All gone according to the PET scan, no FDG activity at all in the two treated areas (Left lymph node and BoT) or anywhere for that matter. PET scan was done from skull base to mid thigh. Oncologist was very happy though she couldn't resist taking a small dig at me for not getting the feeding tube prior to treatment. Blood work is doing very well. She said no more PET scans which sounded kinda weird but . . . ENT was extremely happy. Don't think I'd ever seen him smile never mind grin ear to ear like he'd won the lottery. ENT did the throat scope thru the nose and said everything looked great. Small amount of phlegm back there. I finally started to experience some minor dry mouth at back of throat. Only two real side effects so far, small problem with hearing and very mild neuropathy bottom of my feet when I go for a walk. Sense of taste has not progressed anymore than last time which sucks. Sleeping is now good. Now it's just see the ENT every six weeks for the first year post treatment/diagnosis . . . .

After I got the individual rad treatments I went straight home and put an aloe vera lotion on my neck right away, it was only a 15 minute drive home for me luckily. After a couple of hours I put CeraVe or a coconut oil lotion on my neck, switched back and forth. My throat got the standard 1st and 2nd degree (couple of spots) burns after rads treatment completed but it all healed up in about a week thanx to Regenecare samples the rad clinic gave me for the burns. That stuff worked great for me. The rad people also recommended Jeans Cream (another free sample) but I never really used it, didn't like it but most people do. It's available on Amazon.

I never had the shakes but I bet that's due to the chemo. Is he doing cisplatin or carboplatin? For his neck though stretching is just as important. I constantly stretched my neck and jaw. You want to stay ahead of the game if at all possible.

Keep in mind I don't know your dads diagnosis, age, pre-existing conditions, or treatment plan. My whole deal was a little different than most peoples on here. No pre-existing medical problems, upon recommendation from my EnT, Oncologist, and Radiologist no surgery prior to treatment other than biopsy. Cisplatin vs carboplatin chemo and I also fasted before/after chemo sessions, and a few other minor things. I learned a lot from everyone here and tailored my plan for myself accordingly. But everyone’s journey is different and you'll all get through it. his board and its members are a great resource. Any more questions please don't hesitate to ask.

I did do VMAT and was very happy with results. I was in good enough shape where my radiologist dosed me with 2.2 greys rather than standard 2 greys because he thought I could take it. Turned out he was right. Basically with the VMAT machine I was on it did three passes per session. First pass was to make sure it was aimed correctly where the radiologist team wanted it. Passes two and three were the actual radiation itself. About halfway through treament they did another CT scan on my tumor because it had shrunk so much. They re-did my radiation plan, happens in about 50% of patients my radiologist said.

Proton is available in my area in one place but it would have required more travel time for me.

For chemo my Oncologist did three large doses, about 220 mils per shot average based on height/weight. She said that was the "standard" when I asked why three vs five. I didn't like that answer but stood out to me for one reason that I read on the CSN board. This woman said the three large doses were bad enough, she cringed at the thought of having to do it once a week like most people even with the smaller dose. She liked that she had a couple weeks recovery time between chemo treamants and I have to agree with her logic. My chemo fasting plan really reduced any chemo side effects for me. I virtually had none other than my blood work taking a pounding which is normal. The three doses vs five actually worked great for my chemo fasting plan too. I don't know what your Oncologist has planned for you but I did NOT tell mine that I was fasting for chemo, she'd have had a fit. She was upset enough that I did not get a feeding tube for my treatments lol . . .