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Just back from MD Anderson

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

Well folks, that was an enlightening experience. They tell me that all in one day was extremely unusual but look at this schedule:

8:30 Met with head of Head/Neck department (he's a surgeon, that's important you'll see later)
11:30 Had video taken of my SCL/bot (pretty amazing)
1:00 Dental Oncology - Don't need any teeth pulled
2:00 Chemo Oncology - Ug, but doable
3:30 Radiation Oncology-Really Ugly
6:00 CT Scan

I'll get their final suggestions for therapy tomorrow (Friday) as they are presenting my case to the tumor board this evening. That said, the preliminary attack suggestion is surgery is contraindicated here as full radiation is going to be necessary (pretty interesting coming from a surgeon and given that this was strongly recommended by the surgeon I saw here in Dallas). So, it looks like Induction Chemo followed by a full course of Chemo/Radiation is what it will be. This course of treatment corresponds to a treatment plan I got from Baylor Cancer Center here in Dallas.

So, it seems my only decision (and they said it really is mine as they say the data is inconclusive on the effectiveness of induction) is induction or no induction. I'll need to make it quickly as everyone (Dallas & Houston, which ever I choose for treatment) wants to start in the next two weeks.

They did a pretty good (frightening) job of laying out what is to come. Induction will probably not be that bad, but I'm not all the sure about wanting to deal with it and the pump. Chemo/Radiation until around day 14-18 will seem like no big deal and then the hammer will start to fall. Pretty lousy things to deal with through the end of the treatment(s) (6-7 weeks). One thing that I'm really glad that I was told (by a Chemo doc in Dallas) was that my darkest time emotionally will probably be after treatment is over and I don't seem to feel any better for some weeks. He said most Doc's don't really tell their patients that and I thought that that was something that would be incredibly important to know. How else could you have your expectations in place. Thinking I'd start to get better shortly after treatment ended and it not happening, would be really hard to get through.

More to come when I have something to say. I'm thinking of starting a blog from the first day (port insertion) as it might be valuable to someone who comes after me.

Take care everyone and thanks for all the support and ideas/suggestions/observations.

Joe Cortney

longtermsurvivor's picture
longtermsurvivor
Posts: 1823
Joined: Mar 2010

from an emotional perspective, it is nice to have a plan. dont sweat the small details. just keep putting one foot in front of the other. My first SCC was BOT, with one positive node. Rads and a radical neck dissection later, I did great. Didnt miss a single day of work from rads, and only two weeksmfrom the surgery. You willmdo fine.

Pat

alaskanjan's picture
alaskanjan
Posts: 42
Joined: Apr 2012

I just wanted to weigh in on your comments. My husband also went to MD Anderson for treatment of BOT cancer. Your schedule and story is oh so familiar. We were so relieved when treatment was over on Feb. 8th of this year and we could come home. My husband, like you, did not have surgery. Chemotherapy and Radiation were indicated and planned for by the board. Jack did have induction chemo with all of it's associated side effects. When we had the last appointment with the surgeon he said, "I guess you think that you will go home and be back to normal shortly. That's not going to happen, it takes a long time to recover and you will need to be patient." Boy was he right! Everyone is different and that is one important thing to remember. I think time to recovery varies greatly with age, any other medical problems, one's own response to both chemo and radiation, and, maybe most importantly, one's emotional outlook. Keep your thoughts positive, see your glass half full and stay as active as possible to speed your recovery. Godspeed on your journey through this treatment.

katenorwood
Posts: 1853
Joined: May 2012

Joe,
I have been hearing nothing but great reports from folks going there ! With my dx (ACC) I have tons of friends treating there, and in trials there. Good luck with everything ! And may your tx's and healing be an easy journey ! Katie

Crazymom's picture
Crazymom
Posts: 300
Joined: Nov 2011

I was there at MD Anderson today too. I just got my post 6 month radiation CT Skan and it was NED!! no sign of cancer. I went through the exact same schedule you are going through last November. My cancer was SCC primary on left tonsil and 3 left lymph nodes. I finished radiation March 12, 2012. I did not have any surgery to remove anything. Hope all goes well They do a great job. The last two weeks after the radiation were the worst. I had no trouble with Chemotherapy. I did not have a pump and no one talked about induction.

Good Luck,

Ann

CivilMatt's picture
CivilMatt
Posts: 3022
Joined: May 2012

Hi Joe,

Sounds like you have the fall season all planned out for you (just about). That’s good, the sooner you kick the invader to the curb the better you will feel. As for good (honest) information on what to expect while in treatments; you can count on your friends (here at H&N) to lay it on the line. You will do fine.

Best (and I mean it),

Matt

Billie67's picture
Billie67
Posts: 834
Joined: Jul 2012

At this point it can all seem overwhelming but try not to think of it all at once. Honestly take it day by day. Emotionally you will feel better once treatment actually gets started and then just focus on each day as it comes. My last week of radiation and for the 2 1/2 weeks after was my worst time. Then week by week I noticed improvements, I am now 12 weeks and besides not being able to eat as much as I'd like, I'm doing pretty ok!
Keep us posted and always ask questions because someone here will have some answers for you.
I will be saying a prayer for you tonight that your treatments go as smooth as possible
Take good care,
Billie

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

Rough road, but you will make it. For me: the second to the last week of treatment AND the second week post treatment were the worst. I had a psychological lift during the last week of treatment. And the staff and other patients helped boost my mood by applauding my progress.

The first week post treatment was rough physically, but my mood was elevated because I thought I would soon be better. The reality of the second week was a real downer. But after the third week, I really started noticing the improvement.

I think some of the poor mood comes from the adjunct medication. Pain medicines can be a real downer. But all of us cancer patients needed them. I don't think any of us would have taken the strong pain medicines unless they were absolutely necessary.

So after treatment, your tissues need to heal so you can taper the pain meds and then start feeling good. Rick.

D Lewis's picture
D Lewis
Posts: 1540
Joined: Jan 2010

You have a plan, and you can get through this. Holding good thoughts for you.

I was stage 4 base-of-tongue SCC with mets to multiple lymph nodes on both sides. Very high dose chemo with concurrent max dose radiation. I asked my Stanford doc about induction chemo as well, and he stated that Stanford currently had no data to show that it would improve long-term outcome, and that it would make me very sick. His recommendation was that I not do the induction chemo. I followed his advice. So far so good for me.

Deb

jcortney's picture
jcortney
Posts: 426
Joined: Sep 2012

I'm pretty committed to no induction. Everything I read and hear (and even my doc says it only adds about 2%) says that there is no conclusive evidence of any value. So, next week I'll get the port in and onward, full chemo and rads. I'm actually looking forward to getting started and getting all this drama behind me.

You guys are the best, thanks for all the encouragement.

Joe

amy_h414's picture
amy_h414
Posts: 98
Joined: May 2012

My husband did not do induction chemo. As far as I know it wasn't even offered to him. He did 6 cisplatin infusions along with 35 rads. He was declared cancer free last week.

annmarie123
Posts: 1
Joined: Sep 2012

My husband has stage 4 head and neck cancer. Has 5 chemo and 26 rad treatment behind him.
On boost only to eat. Doesn't want feeding tube but has lost 25 lbs since treatment started. Cannot wait to be on the other side of this. Happy to hear your husband is
now cancer free.

Barbara B
Posts: 40
Joined: Sep 2012

Joe,

My husband had BOT spread to one lymph node. He had 6 chemotherapy and 33 radiation treatments. He is one year post treatment and his last PET was NED.

He did get a feeding tube because we were concerned about weight loss. He is not a big man 5'8" and 160lbs. He only lost 5 pounds during treatment thanks to his determination and my nagging =).

One day at a time and you can do this!

Sendng prayers your way. Barbara

phrannie51's picture
phrannie51
Posts: 3792
Joined: Mar 2012

I was this close ________ to going to MD Anderson, but my Oncologist told me my treatment here would be precisely the same, including the IMRT rad machine...except here I could get Amifostine for my saliva glands. MD Anderson is right up there as the best in the nation, so I'm happy that you have Dr.'s you feel you can trust, and treatment that will work...

Treatment ain't easy but it's doable....and my experience? It wasn't as bad as what I'd feared when I went into it...some days seem like an eternity, but the last six months have shot by...Chemo was harder on me than radiation.

For the first time in your life you're going to have to the adhere to one day at a time, one foot in front of the other....each day, a new day to be conquered....YOU CAN DO IT, and you WILL do it...

Hugs,

p

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