About to Start Unusual Treatment Plan: Questions

Bunnymom · May 2014

Getting ready to start my treatment plan on June 8the for tongue cancer.

First, some background info. Had lateral tongue lesion surgically removed in Sept 2013. Clear margins. Neck dissection to check for lymph nodes, Oct 2013, all clear. One lymph node lit up and another neck dissection, January 2014. Removed node and submandibular gland. Another lymph node lit and yet another neck dissection, April 2014. Four surgeries!

FINALLY tumor board recommended chemo cocktail and radiation. Set to start on June 8th, ending on August 22nd. I'll wrap up this treatment almost a year from the initial biopsy.

I'm being seen by a team of doctors at the University of Chicago Medical Center. This is an excellent hospital and they see a lot of HNC patients. With that said, their protocol is, from what I understand, quite different from what many others have received. I'm wondering if any obe else has received a similar treatment plan?

I will be inpatient for 5 days, then released to go home for 9 days. during my inpatient stays, I will receive a chemo combo of 5FU and Hydrea (drip through port) and 1x per day rads. Total dose: 60 gy. During my time at home, I receive no chemo and no rads. However, I will have six cycles of this. The treatment plan is a total of 12 weeks - inpatient and home.

Has anyone else had treatment like this? I asked the rad Onc about this protocol and was told their research has shown this to be a very successful treatment plan. The reason the rad is stopped and started has to do with fractionalization of the delivery. The total dose is fractionated (spread out over time) for several important reasons. Fractionation allows normal cells time to recover, while tumor cells are generally less efficient in repair between fractions. Fractionation also allows tumor cells that were in a relatively radio-resistant phase of the cell cycle during one treatment to cycle into a sensitive phase of the cycle before the next fraction is given. Similarly, tumor cells that were chronically or acutely hypoxic (and therefore more radioresistant) may reoxygenate between fractions, improving the tumor cell kill.

On a separate note, I went for rad simulation yesterday. It wasn't as horrible as I thought it might be. It went pretty smooth as a matter of fact. The only thing that I might have some worry about is the mouth guard they molded for me. I have a small mouth to begin with and I'm trying to imagine this guard shoved in my mouth plus mucous. Hopefully I can manage this. But, as far as making the mask, it wasn't that bad. I got a look at the treatment room and that was pretty much as expected. I did note the foot thick door and was thinking I'd rather be on the outside of that door than inside!

We went through the usual list of potential side effects. I'm thinking the challenge will be to keep swallowing; get enough nutrition, hydrate and stay ahead of the pain.

Thanks to everyone for the positive thoughts and encouragement. It really helps to keep me moving forward and stay strong. Keep it coming!

BunnyMom

CivilMatt · May 2014

plan is set

Bunnymom,

It all sounds like a recipe for success. Way to set those cancer cells up for destruction. While my rads were 7 weeks of 5 sessions, I imagine your side effects will be similar. I started drinking lots of water and swallowing from the beginning and I think it helped. Other than the pain from neck burn, I was reasonably comfortable and the magic mouth wash stepped in for throat, mouth and tongue discomfort.

Check out the superthread for things to have at home, take the anti-nausea meds early, have some good tunes for mask time.

Good luck, I hope you have a smooth ride (some do).

Matt

SASH · May 2014

Treatment

The one I was offered, which was a trial at the time, was similar. It was 4 day inpatient infusion then off for 2 weeks, with three of these rounds. While doing all the chemo it was going to be 2x a day radiation including the weeks not on chemo. Since it was still a trial, I opted not to go that route as I felt it might be too hard on my body.

If you trust your doctors, and it sounds like you do, following their advice is always good. If it becomes too hard, they can always add delays or change things up to make it so you can handle the treatment.

Good luck.

Hondo · May 2014

Hi Mom

Be as positive as you can, going in is no problem just relax and find something to focus your mind on. That is what I did and it made the time go by fast for me, you will be through this in no time and it will all be a part of you passed soon.

Tim Hondo

fisrpotpe · May 2014

Chatter

I have read some chatter over the last couple years about your somewhat type of treatment. thru all of that i thought it was a good idea. since many survivors i know when 4-5 weeks continuous and then being told we are going to give you break because you are struggling, after break they start back up and finish the plan.

my thoughts come from the idea told many years ago that radiation treatments keep active 6-9 weeks after the treatment. So with this being said 5 treatment work for 6 weeks, then after two weeks 5 more are done. sure seems to me that the radiation continues to work with the two week break out of every 3 weeks. add this up seven straight weeks of radiation plus 6 weeks active when treatment stops equals a today of 13 straight weeks of working radiation in the older method.... with the new method of 12 weeks of treatment plus 6 weeks active when treatment stops equals a total of 19 weeks. Overall i see it like the same amount but works longer and killing more, plus you get healing going on with the 2 week breaks.

personally with the little of knowledge and lots of old method experience i understand this would be a great options.

most of all is having a Positive Mental Attitude will enhance you to kicking cancers butt.

hope this is not confusing to you or anyone else.

john

i would be interested to know if your biopsy's show if you have HPV?

debbiejeanne · May 2014

bunny, i just want to say i'm

bunny, i just want to say i'm praying that tx goes smooth with few side effects. i never had chemo so i can't comment on that. we will be here with you as you go thru tx so come here whenever you like and someone will be here to talk to. be strong and stay positive.

God bless you,

dj

Bunnymom · May 2014

fisrpotpe said:
Chatter
I have read some chatter over the last couple years about your somewhat type of treatment. thru all of that i thought it was a good idea. since many survivors i know when 4-5 weeks continuous and then being told we are going to give you break because you are struggling, after break they start back up and finish the plan.

my thoughts come from the idea told many years ago that radiation treatments keep active 6-9 weeks after the treatment. So with this being said 5 treatment work for 6 weeks, then after two weeks 5 more are done. sure seems to me that the radiation continues to work with the two week break out of every 3 weeks. add this up seven straight weeks of radiation plus 6 weeks active when treatment stops equals a today of 13 straight weeks of working radiation in the older method.... with the new method of 12 weeks of treatment plus 6 weeks active when treatment stops equals a total of 19 weeks. Overall i see it like the same amount but works longer and killing more, plus you get healing going on with the 2 week breaks.

personally with the little of knowledge and lots of old method experience i understand this would be a great options.

most of all is having a Positive Mental Attitude will enhance you to kicking cancers butt.

hope this is not confusing to you or anyone else.

john

i would be interested to know if your biopsy's show if you have HPV?

John

No HPV. Mine started with a sore on the left lateral tongue. Began during intensive dental treatment. Thought it was a canker sore. Kept telling dentists and it was ignored until I finally insisted something be done. I was not familiar with oral cancer. Thankfully I did this. Apparently, constant inflamation can cause cells to become cancerous.

Thanks for the feedback and pep talk!

BunnyMom

KB56 · May 2014

treatment starting

Bunnymom, sounds like a good plan and having the 9 days off in between has to help and I was always told you continue to "cook" for a couple of weeks when you finish radiation and so it would make sense that on your "break" you would continue to receive benefits (zapping the cancer cells) from the radiation. To get a break for your skin to heal seems like it would have to help as well as I was pretty "burned" toward the end. The doctor never stopped treatment but my wife said my neck looked like a reptile.

After a year of diagnosis, biopsies, doctor visits, etc, finally getting started has to be a relief. Stay positive and know you can beat this thing. Good luck as you start next week.

All the best,

Keith

hwt · May 2014

KB56 said:
treatment starting
Bunnymom, sounds like a good plan and having the 9 days off in between has to help and I was always told you continue to "cook" for a couple of weeks when you finish radiation and so it would make sense that on your "break" you would continue to receive benefits (zapping the cancer cells) from the radiation. To get a break for your skin to heal seems like it would have to help as well as I was pretty "burned" toward the end. The doctor never stopped treatment but my wife said my neck looked like a reptile.

After a year of diagnosis, biopsies, doctor visits, etc, finally getting started has to be a relief. Stay positive and know you can beat this thing. Good luck as you start next week.

All the best,

Keith

Bunnymom

Interesting theory for administering your tx. Best wishes for an easy go of it.

Candi

PJ47 · May 2014

Bunnymom said:
John
No HPV. Mine started with a sore on the left lateral tongue. Began during intensive dental treatment. Thought it was a canker sore. Kept telling dentists and it was ignored until I finally insisted something be done. I was not familiar with oral cancer. Thankfully I did this. Apparently, constant inflamation can cause cells to become cancerous.

Thanks for the feedback and pep talk!

BunnyMom

Hi BunnyMom

Was going to inquire about the HPV also but you answered it. What was the intensive dental treatment you were getting prior to the sore? I have read about some relationship of SCC to root canals?

Your treatment does sound different but they have a rationale for it. I probably would ask if there are other universities using it and the efficacy, but then I question most everything.

Going forward I am pulling for you,

PJ

Bunnymom · May 2014

PJ47 said:
Hi BunnyMom
Was going to inquire about the HPV also but you answered it. What was the intensive dental treatment you were getting prior to the sore? I have read about some relationship of SCC to root canals?

Your treatment does sound different but they have a rationale for it. I probably would ask if there are other universities using it and the efficacy, but then I question most everything.

Going forward I am pulling for you,

PJ

PJ

I was having a dental implant placed. The sore developed right next to the missing tooth where I was getting the implant. I complained repeatedly but they never did anything about it. They missed it completely.

BunnyMom

Kent Cass · June 2014

hwt said:
Bunnymom
Interesting theory for administering your tx. Best wishes for an easy go of it.

Candi

new to me

Hydrea, I see, was first synthesized in 1869. Somewhat of a catlyst to ramp-up the bodies production of white blood cells. U of Chicago may have tweeked it a little for the actual killing of C cells. It's used for a number of ailments, actually, including sickle-cell and even part of Aids tx. Seems most chemo for H&N are platinum-based, so I think it's a good idea to ask your Drs just how long this tx plan they've got for you has been around, and who else is doing it. I'd never heard of it, and could be another experimental thing going on. If results are on the upside, that's great. Possible with your specifics is why you're a candidate for it, also.

Wish my Rad Dr had a clue about a mouth guard. Didn't, and my teeth have suffered greatly. If you have difficulty, experiment until you find what works. For me and my 20+ minute sessions, the swallowing was an issue until I found that holding my mouth in an overbite position and just breathing thru my mouth did wonders for it. 1/2-tab of Xanax was also part of it. Would advise against Morphine for the rad sessions, if they put you on it- can become a 20-minute nightmare!

My tx was also a little different, in that I carried 2 bags instead of just the one for 5-FU, with getting concurrent rads. My second bag was 96-hours of Cisplatin getting also pumped into me in weeks #1 and #4, and the results got quite ugly. Their stretching yours out should help prevent some, and hopefully most, of the bad side effects one gets during tx. Please keep us informed on how you are doing- think we all like to hear about the new, and what's what with it, in case we get put in the tx tunnel again.

Hopes and Prayers are with you

kcass

PJ47 · June 2014

Bunnymom said:
PJ
PJ

I was having a dental implant placed. The sore developed right next to the missing tooth where I was getting the implant. I complained repeatedly but they never did anything about it. They missed it completely.

BunnyMom

Hmmm

Makes you wonder about dental work...

PJ

About to Start Unusual Treatment Plan: Questions

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