My Journey
So, I thought I'd start posting a blog as my treatment progresses. Maybe it will be of some help to those that find their way here in the future and regardless, it helps me to write about it.
If you just got here, you can read re diagnosis and surgery in the 1st pargraph of the 1st post in the "Hello All" thread so i'll procede from there.
First let me say how blessed I am. I'm, lucky to have probably one of the best healthcare plans in the USA. I'm blessed to have the finances to cover expenses and short term loss on income. I'm blessed to live 1 1/2 miles from the team that will be treating me and I'm blessed that these doctors are among the best, most highly rated and most up to date team in the Mid West. I'm also told by the docs I've seen so far that, if you're unfortunate enough to have a cancer, this is the one to have its its well known, well treatable and highly surviveable.
I fully realise not everyone has that fortune and I know from bitter experience how mentally / physically and financially draining this whole thing can be when we deallt with wifes breast cancer 10 yrs ago and I was not in the same position in life.
Anyhow, that said, Dec 4th had my initial consult with oncologist who will be administering chemo. Have to say I was very impressed. The guy had done his homework and knew more about me and my case than I did before he walked in the exam room door.
I'll be getting 3 rounds of chemo at a maximum possible dose. I'll be hooked up and spend the best pasrt of the day in the hospital while the drug is administered 3 times in total. I was told we have learned an awful lot about this particular cancer in just the last 3 years and this is thought to be the best way to procede. I'll just add this is the best way to procede for me, in my case and not necessarily for everyone. 1 factor he mentioned was that I was young enough, strong enogh and have no other underlying health issues and this was why this dose / timeframe was best in my case.
I should not have to have a feeding tube though that may change.
Next up is initial consult with radition doc, a 1 hr meet with a nurses asst. on the side effects of chemo and an as yet to be scheduled PET scan.
1 thing I will add is that my diagnosis is highly likely to be related to the HPV virus. If you're unfamiliar. i'll let you go read up on that for yourself. Its actually a good thing as it seems to respond really well to treatment.
BUT, if you are a parent or grandparent with any influence over kids, well, Go get your young teens vaccinated!! That way they are much much less likely to find themselves here 25 yrs from now.
Comments
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Dec 7th. (A day that will
Dec 7th. (A day that will live in infamy) Just back from radiation consultation. Another impressive doctor that knew everything about me before he walked in the door.
I'll be having 33 treatments. Discussed all the things re eating / weight etc that all you good folks have pointed out on here. Feeding tube offerd but advised to try and persist without it as its important to do your best to keep those bits of your mouth working and in practice as much as you possibly can during treatment and, recovery of mouth / saliva etc etc is much quicker if you can maintain without the tube. Again, this is the plan tailored to me so not necessisarily true for you.
I have to see a dentist in case I have any unknown issues because they would seriously disrupt treatment if a rotten tooth / abcess comes up during treatment. Made that appointment and they will pull any teeth / do any fillings same day as exam if needed. Hopefuy not! I have to say I'm more afraid of dentists than cancer!
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Dec 9th. PET scan today. Not
Dec 9th. PET scan today. Not as impressed as I have been with the rest of the medical care so far. It was a mobile unit which travels between the 4 hospital centers in this system in the Cinci / Dayton area. Bit cramped. Think the guy that was injecting the imaging substance was his 1st day on the job. Have to sit and wait for an hour for the substance to circulate, in a tiny room with no TV. COVID precautions a bit poor considering I should think most people in and out all day would be somewhat vunerable. Oh yeah, and a $600 bill to boot.
Grumble grumble.
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TCK,The Cincinnati Kid said:Dec 9th. PET scan today. Not
Dec 9th. PET scan today. Not as impressed as I have been with the rest of the medical care so far. It was a mobile unit which travels between the 4 hospital centers in this system in the Cinci / Dayton area. Bit cramped. Think the guy that was injecting the imaging substance was his 1st day on the job. Have to sit and wait for an hour for the substance to circulate, in a tiny room with no TV. COVID precautions a bit poor considering I should think most people in and out all day would be somewhat vunerable. Oh yeah, and a $600 bill to boot.
Grumble grumble.
It's a scary proposition getting started, with the whole mask thing, and concerns about chemo.
But, if it knocks out your Cancer, it will all be worth it!
I personally had a feeding tube, but never used it. If you can get by without it, I certainly believe you're better off. I hope you're able to do so.
As I'm SURE many people have mentioned - eat ALL of your favorites, and LOTS of them, right now. If you can put on a couple pounds, it would be a good thing!
You seem to be a very positive individual, and I suspect you'll be able to handle it all.
I wish you the best possible outcome!
mg
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PET/CT
Cincy
The 45 minute to 1-hour wait is standard, as is no TV. They call it "quiet time." I was told not to even talk. That time is to let the radioactive isotoopes and sugar water circulate thru the body. I've been thru 6 PETs, followed by a CT, and the same with every one.
As for the mobile unit, that is interesting. I say this because I recently saw a big-box semi-truck near our one Hospital with the words PET/CT Scans written on the side of the box: white letters in a red stripe. Figured it was a new unit/machine being delivered, but maybe it was a "mobile unit."
As for the 3 doses of Chemo- typical, nowdays: Cisplatin and 5-FU. I had the same amount in 2 doses with carrying 2 pumps for 48 hours in weeks 1 and 4 (the only one I know of to get that regiment), making me too sick for Rads in week 5 and starting week 6 in the Hospital getting antibiotic drips. Some people opt out of the 3rd Chemo session, but that's down the road for you and your Onco to deal with. The mask and time on the table can be trying. I got zapped in 20 places/session that lasted 20-25 minutes because I was unknown Primary. Trick I learned was to have my top-front teeth over my bottom with mouth open slightly to breathe thru, and helped me a lot with the saliva issue. Thing is- if your's in HPV-related you will not get an extreme C&R treatment. The HPV is easier to deal with, as others on the Forum can testify to.
Best of luck to you. Was just a big bump in the road of life to me at the time of tx. After-effects have made that road a gravel, rather than paved, road since, but come what may. This is C, and it has only one thing in mind- to kill you, so man-up and "bring it on." We've all been where you are to varying degrees, and are living testimony that it is worth it. I'm over 11-1/2 years out to the good!
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Logan,Logan51 said:PET/CT
Cincy
The 45 minute to 1-hour wait is standard, as is no TV. They call it "quiet time." I was told not to even talk. That time is to let the radioactive isotoopes and sugar water circulate thru the body. I've been thru 6 PETs, followed by a CT, and the same with every one.
As for the mobile unit, that is interesting. I say this because I recently saw a big-box semi-truck near our one Hospital with the words PET/CT Scans written on the side of the box: white letters in a red stripe. Figured it was a new unit/machine being delivered, but maybe it was a "mobile unit."
As for the 3 doses of Chemo- typical, nowdays: Cisplatin and 5-FU. I had the same amount in 2 doses with carrying 2 pumps for 48 hours in weeks 1 and 4 (the only one I know of to get that regiment), making me too sick for Rads in week 5 and starting week 6 in the Hospital getting antibiotic drips. Some people opt out of the 3rd Chemo session, but that's down the road for you and your Onco to deal with. The mask and time on the table can be trying. I got zapped in 20 places/session that lasted 20-25 minutes because I was unknown Primary. Trick I learned was to have my top-front teeth over my bottom with mouth open slightly to breathe thru, and helped me a lot with the saliva issue. Thing is- if your's in HPV-related you will not get an extreme C&R treatment. The HPV is easier to deal with, as others on the Forum can testify to.
Best of luck to you. Was just a big bump in the road of life to me at the time of tx. After-effects have made that road a gravel, rather than paved, road since, but come what may. This is C, and it has only one thing in mind- to kill you, so man-up and "bring it on." We've all been where you are to varying degrees, and are living testimony that it is worth it. I'm over 11-1/2 years out to the good!
I had forgotten about those pumps (rubber balls) that I worn in a pouch in a belt. That 5FU was the toughest part of my treatment. I did 3 follow ups on that stuff.
Radiation and Cisplatin seemed easy compared (although the Cisplatin is probably what made my "average" hearing into "need hearing aids soon" hearing... LOL)
I thought I saw you were Nasopharyngeal - which is what I was. I'm glad you're doing well for 11-1/2 years. I'm only out 17 months so far!
I hope the Cincinnati Kid and I pull through it as well as you did!
Happy Holidays!
mg
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Dec 9th. 3 hrs after the scan
Dec 9th. 3 hrs after the scan, my phone goes ding and I can check my scan results. All good and nothing to see. Very fortunate. Off to a good start.
Up next a 1 hr consult with a nurses asst. on chemo and side effects tomorrow afternoon. My wallet is suffering co-pay fatigue.
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Dec 11th.
Dec 11th.
A consult today with 3 folks in the chemo dept. Side effects, financial assitance programs and how to take care of yourself during treatment. I have to say, having been to this very same office 10yrs ago with wife for breast cancer....its nite and day....they have improved every aspect of their service 100%. I can even get same day appts and service if needed throughout my treatment.
As mentioned I have 33 radiation treatments over 44 days (weekends and holidays dont count) and chemo will be days 1, 22 and I think 43 was the last one. The chemo process last 4+ hrs but the guts of that isnt chemo, its hydration, stuff to protect kidneys etc. Got a boatload of printed advice to read through.
One terrible bit of news to report. NO booty calls are permitted for 4 days after each chemo treatment. This is really going to interfere with my normal every day twice a day routine!
Also getting the impression my treatment will not begin until January. I'm told that just to make the mask / mold thingy for radiation takes 10 days from the CT scan I have to get and that hasnt yet been done. I'm OK with this as I'll be able to party hard(ish) over Xmas and New Year
Up next.....the dreaded dentist.
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Dec 14th. Dreaded dentist
Dec 14th. Dreaded dentist finds nothing serious but on the X-ray and with exam, says I have a shedload of bacteria built up and wants do do a deep clean. He says not wise to undergo radiation with this much bacteria in the mouth. Hard for me to argue. Deep clean is scheduled for 15th so at least everyone is in the "time is important camp".
The lesson here for you good folks just starting: After my surgery was complete and during the Post Op consult, my head & neck specialist / surgeon refers me to the oncologist (chemo guy) and the radiation oncologist. I delayed seeing the 2nd until done with the first. I had not realised how many further hoops I'd have to jump through. Pet scan, side effects consult, dentist etc etc....so dont waste time!!
Anyhow, deep cleaning done and, because I'm such a dentist woosey I have to get fully margueritavilled and my wallet, even with dental insurance, is down another $1500
grumble grumble
Also, my rad treatment will be delayed a short time whilst any swelling from the cleaning is around. Back to Dreaded dentist in a week to hopefully get the all clear. He is in communication with radiation doc so I may be at least able to get the mask sheild thing done soon. Fairly certain now my treatment wont start untill Jan
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CK,The Cincinnati Kid said:Dec 14th. Dreaded dentist
Dec 14th. Dreaded dentist finds nothing serious but on the X-ray and with exam, says I have a shedload of bacteria built up and wants do do a deep clean. He says not wise to undergo radiation with this much bacteria in the mouth. Hard for me to argue. Deep clean is scheduled for 15th so at least everyone is in the "time is important camp".
The lesson here for you good folks just starting: After my surgery was complete and during the Post Op consult, my head & neck specialist / surgeon refers me to the oncologist (chemo guy) and the radiation oncologist. I delayed seeing the 2nd until done with the first. I had not realised how many further hoops I'd have to jump through. Pet scan, side effects consult, dentist etc etc....so dont waste time!!
Anyhow, deep cleaning done and, because I'm such a dentist woosey I have to get fully margueritavilled and my wallet, even with dental insurance, is down another $1500
grumble grumble
Also, my rad treatment will be delayed a short time whilst any swelling from the cleaning is around. Back to Dreaded dentist in a week to hopefully get the all clear. He is in communication with radiation doc so I may be at least able to get the mask sheild thing done soon. Fairly certain now my treatment wont start untill Jan
EAT EAT EAT all of your favorites - as MUCH as you can!! If your treatments don't start until January - then this Christmas season should be a FEAST!!
It's impossible to describe temporary loss of taste. You'll be glad to have a few extra pounds - trust me!
You're continuing to talk out your process, and that's a great sign - in my mind...
Again - you strike me as a very positive person, and I suspect you'll be fine!
mg
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yup. I'm on it mtrguy. Amotorcycleguy said:CK,
EAT EAT EAT all of your favorites - as MUCH as you can!! If your treatments don't start until January - then this Christmas season should be a FEAST!!
It's impossible to describe temporary loss of taste. You'll be glad to have a few extra pounds - trust me!
You're continuing to talk out your process, and that's a great sign - in my mind...
Again - you strike me as a very positive person, and I suspect you'll be fine!
mg
yup. I'm on it mtrguy. A brief delay for the dental but I'm rolling the food. Both the wife and myself are a bit handy in the kitchen so all the hearty recipies are coming out.
Maybe when the tastebuds are shot i'll like brussel sprouts, formally known in my house as "the devils testicles" and never allowed in my home. ugghhh
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TCK,The Cincinnati Kid said:yup. I'm on it mtrguy. A
yup. I'm on it mtrguy. A brief delay for the dental but I'm rolling the food. Both the wife and myself are a bit handy in the kitchen so all the hearty recipies are coming out.
Maybe when the tastebuds are shot i'll like brussel sprouts, formally known in my house as "the devils testicles" and never allowed in my home. ugghhh
I'm glad you and your wife are great cooks - and that you're getting LOTS of the good stuff to eat...
Taste loss is almost impossible to describe, until you've experienced it. Luckily, it's temporary - and comes back after treatment.
I had trouble with things like beef for the longest time - but I ate beef brisket, at this construction site yesterday and it was really good!
It sounds like a fantastic time for some cook-off competitions with your wife - LOL!
mg
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As someone who grew up inThe Cincinnati Kid said:yup. I'm on it mtrguy. A
yup. I'm on it mtrguy. A brief delay for the dental but I'm rolling the food. Both the wife and myself are a bit handy in the kitchen so all the hearty recipies are coming out.
Maybe when the tastebuds are shot i'll like brussel sprouts, formally known in my house as "the devils testicles" and never allowed in my home. ugghhh
As someone who grew up in Brussels, I'll say that Brussels sprouts are all about the right preparation. Most people cook them until they become soft and bitter, which makes them, indeed, disgusting. Try steaming them and serve with a buttery sauce.
Not very treatment related, but I regard it as my duty to inform all the Brussels sprouts hater that they were probably the victims of bad preparation.
Apart from that, from someone who's just in the middle of taste alteration, it's really frustrating and hard. I love eating, but it's almost impossible to eat when you don't enjoy. Your stomach keeps signalling to your brain to stop sending it inedible stuff and you end up losing your appetite. So, like Motorcycle guy, I'll underline the advice to eat as if you were preparing for a siege.
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Dec 22.
Dec 22.
Back to the dentist to make sure I'm all healed good and to get the all clear for chemo/radiation treatment. Here's something you might pay attention to.....BE ASSERTIVE!...Dentist originally scheduled this for Jan 5th. I was coming out of the dental anestetic coma at the time but as soon as I found that out, I was on the phone moaning about the delay and ended up getting his last call before he shuts down for the holifdays. Had dentist fax the all clear to radiation oncologist right there and then before I left the office. The lesson here is, time is of the essence. This, I think is more true in the period between diagnosis and surgery than it is between surgery and chemo / rad treatment. What I would say is that, as a rookie, as we all are when it starts, I didn't realise how many hoops I'd have to jump through after surgery but before chemo/radiation treatment started and had I been better informed, I'd be under treatment about now instead of probabaly 3 weeks from now.
Up next, I think, is a head scan which is used to then make the Darth Vader head sheild / mask for radiation treatment. Be sure I'll be calling the rad oncologist in the morning!
Be Captain Assertive.
Merry Xmas all! TCK
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Yep
Had my complete dental workup w/$ X-ray, FT installed, as well as Power Port implanted in upper-left of chest before tx started. And, of course, these after the Surgical biopsy and PET/CT. From the Biopsy to start of tx? 5 weeks for me.
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Great point cincy kidmotorcycleguy said:TCK,
One thing I learned is to TAKE CHARGE of my own treatment schedule; the great people in our medical professions do their best, but reminders (to them) about appointments and tests are a great idea!
Also, you mentioned your wife. Is she able to attend appointments with you?
The first treatment is scary - but you'll find they're not so bad after that first one...
Have a great holiday season - one that you'll remember forever!!
mg
Multiple studies have shown that the time from being diagnosed to tx what ever the tx plan that patients that get treated within the 6 week time period usually have better results. I tried to get ahead of mine went to the dentist before Tors and then 5 weeks later started Radiation tx for a total of 33. Sounds like you are on the right track. Good luck and you will do just fine.
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Yeah, Lady Kid is fortunatemotorcycleguy said:TCK,
One thing I learned is to TAKE CHARGE of my own treatment schedule; the great people in our medical professions do their best, but reminders (to them) about appointments and tests are a great idea!
Also, you mentioned your wife. Is she able to attend appointments with you?
The first treatment is scary - but you'll find they're not so bad after that first one...
Have a great holiday season - one that you'll remember forever!!
mg
Yeah, Lady Kid is fortunate to work for a great very understanding company...(shoutout for COSTCO) so shes available when needed. She'll be dropping me off at the 1st chemo / rad day but as we live only 5 minutes away, she'll go home and hang until needed. Also, this may be relevent to others. She applied for and received Family and Medical leave. Its unpaid but can be used at short notice and I think is valid for a year once approved. FMLA I think is the program.
And yeah, as Big G and MCG have confirmed....take charge, be assertive. Time matters .Id say 1 key ingrediant missing from my care team is some sort of case manager pulling all the different doctors together and communicating early to me whats needed. So, in absence of a case manager....you have to be your own case manager.
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Yes!The Cincinnati Kid said:Yeah, Lady Kid is fortunate
Yeah, Lady Kid is fortunate to work for a great very understanding company...(shoutout for COSTCO) so shes available when needed. She'll be dropping me off at the 1st chemo / rad day but as we live only 5 minutes away, she'll go home and hang until needed. Also, this may be relevent to others. She applied for and received Family and Medical leave. Its unpaid but can be used at short notice and I think is valid for a year once approved. FMLA I think is the program.
And yeah, as Big G and MCG have confirmed....take charge, be assertive. Time matters .Id say 1 key ingrediant missing from my care team is some sort of case manager pulling all the different doctors together and communicating early to me whats needed. So, in absence of a case manager....you have to be your own case manager.
Good for you! As a nurse, I know it to be VERY TRUE that patients need to be their own advocate! But I found out even more so going through treatment this past year for my husband. He completed treatment June 3. We had an excellent, excellent team of providers, but still had to keep on top of things. Blessings to you as you start treatments. Remember, sometimes it’s one day at a time, and sometimes it’s one hour at a time. But you WILL get through it!
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....and, just to show how
....and, just to show how being assertive works, 18hrs after getting the all clear from the dentist, I've got an appointment for the 29th Dec to get a scan and get the mask / shield made which I'm told will take about an hour then, roughly speaking treatment should start about 2 weeks after that. I got that appt because I made a pest of myself to the rad docs office early this morning. So, be a pest....but be a nice, polite humerous pest!
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Good for you!The Cincinnati Kid said:....and, just to show how
....and, just to show how being assertive works, 18hrs after getting the all clear from the dentist, I've got an appointment for the 29th Dec to get a scan and get the mask / shield made which I'm told will take about an hour then, roughly speaking treatment should start about 2 weeks after that. I got that appt because I made a pest of myself to the rad docs office early this morning. So, be a pest....but be a nice, polite humerous pest!
Thats great. There are studies that show there are differences in better outcomes depending on time of diagnosis to treatment, and even time interval of surgery ( if applicable) to when radiation starts. Plus, you’re that much closer to being done;)
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Dec 29th. Today went for the
Dec 29th. Today went for the appt. to make the face mask. I was incorrect earlier when I called it a shield. It doesn't serve to shield anything and its primary purpose is to keep me immobile during rad treatment. It was, I shall say, an interesting experience. The whole thing starts with 2 nurses telling me to strip from the waist up then placing furry handcuffs on each wrist. (really, I'm not making this up) Unfortunatly boys, the purpose of the furry cuffs isnt anything cool. So many gags here but I was on my best behaviour. Anyhow, the purpose is, the other end of the cuffs are stretched and fastened down by your legs and its to pull your shoulders down during the scan / mask process. I'm on the CT scanner table then a plastic mesh is streteched over my face. Quite hot at first but it cools down fairly quick. Then into the scanner, keep very still for about 10 minutes then, a mask cool off period of about 5 minutes before its removed and Lo!...Theres a mesh 3D model of your head. Only advice I have here is guys, if you wear a bit of stubble you might want to shave that day as its a tad sticky when its pulled off your face.
Up next, 2-3 weeks of feasting and gorging on food and wine before my chemo / rad treatment starts. They said probably the 12th / 13th of Jan but I put them off untill Mon 18th as, for 17yrs, my buddy has hosted a Man's Weekend at his Smoky Mountain cabin in TN and I figure I'll make that my last party of food and wine for a while. Hopefully that short delay wont kill me but if it does, itll be worth it!
Merry Xmas and Happy New Year and good fortune to all of you. Next update sometime in Jan.
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