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My little brother

BabsOregon
Posts: 30
Joined: Jun 2011

I first logged in to this site (different cancer) because my husband had a brain tumor. Within a week of his death (October 10th, my little brother (45 years old) was diagnosed with a tumor in his neck. I convinced him to go to MD Anderson. He has been there for the last few days and there has been good news and bad. The PET scan doesn't show cancer anywhere else but the tumor in the back of his tongue and tonsils is pretty big. The exact course of treatment hasn't been proposed yet but it looks like a 7 week course of radiation either concurrent with chemo or followed by chemo. My brother doesn't have much money and his wife needs to return to Alabama to her job. We aren't sure what he will be going through but it sounds like he will need pretty constant care within a few weeks of the start of chemo. They told him that he will need a feeding tube, that his throat will be horribly inflamed, that his neck will be burned, and that his jawbone and saliva glands will be destroyed. I am miles away in Oregon and would like to help him but I don't know exactly what to do. He is dyslexic and has difficulty communicating in writing but I think he would be helped by talking to people who have experienced what he is about to go through. I guess I am looking for suggestions. I was here to help my husband but I am tapped out financially and don't think I can make it to Texas to help. I have another brother who will try to go there for a few days but he lives in Ohio and can't leave his job for long.
Thanks in advance for your thoughts.
Babs

Tim6003's picture
Tim6003
Posts: 1497
Joined: Nov 2011

Sound like a rough year. I'm sorry for you brother situation. There is another guy on this site steve1958 (I think it is 1958) ...he too is alone in the same location and his wife and kids are back in california as he goes thru treatment.

Everything they told you sounds correct. It's not a picnic and I do believe he will need help at some point. Most do, so do not.

I was Base of Tongue with 1 lympn node HPV+ SCC ....I had Erbitux for chemo and 7 weeks of rads (with some delays due to complications to severe burns and reaction to Erbitux) ....

I would be happy to offer a conversation as needed to your brother if he feels like he would like to reach out to some others who have been through what he will be experiencing. I am no doctor and I am clear between what my exprience is and what my opinion is. His team of doc at MD Anderson and all the support groups they offer will be able to give him some great info and "heads up" on things to expect....so I suggest he get plugged in there as much as he can.

He can certainly consider us here his online family ....we have and get a bond quite quickly with those who have to join our group.

I whispered a prayer for your brother and your family ...this will be a tough road, but you and he can come out on top! :)

Best,

Tim

Feel free to PM me if you would like my contact number.

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

we all differ on the amount of care needed, but I wouldn't necessarily assume he'll need a lot of home care.
I had the standard rads with 8 once-a-week chemo treatments, PEG tube, burned neck, several infections, thrush, no saliva...the works. got through it with help from my 20-year-old son--but he was busy with school and his own life too.

what I needed the most was a driver, for the once-a-week chemo treatments. chemo included a heavy dose of benadryl, so there was no way I was driving 35 mins. home. but the kid drove me when I needed him, and I drove myself for most of the daily radiation.
having him pick up prescriptions when I felt lousy was also really helpful.

at home, there was never that much anybody could do for me. with the PEG tube, didn't need cooking. mostly, I wanted to sleep, take my meds, and not talk on the phone.
oh yeah, having somebody screen my calls was really important.
other than moral support, not sure what else anybody could've done for me.

blessings to you and your family.

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

Are you in Portland? If so, can your brother get his treatment at OHSU? Just a suggestion. Rick.

CivilMatt's picture
CivilMatt
Posts: 3093
Joined: May 2012

Hi Babs,

Your 5 minute cancer course sounded about right (for Head and Neck cancer). You’ve traveled the cancer road before, it has its challenges.

I needed a driver everyday as I took Lorazapam to help me through radiation treatments. Heck, my wife did a ton of things to help me. I just wanted to sleep.

I hope you find the help he needs. I know there is a lot of help out there (we were always being offered help). You are more than welcome to drop in here and ask us anything.

Best,

Matt

phrannie51's picture
phrannie51
Posts: 3852
Joined: Mar 2012

pretty thoroughly when I was first diagnosed. The hospital probably has some good leads on cheaper places to live while in treatment...they also have shuttles from all over the area of the hospital to get people to and from treatment. The whole area around the hospital caters to folks who are getting treatment.

I needed and greatly appreciated the help I got. My husband took me everyday to get my amifostine, then came back, picked me up and took me to radiation. I, like Matt, took Lorazipam everyday so couldn't really drive myself. My sister cooked for my husband so I didn't have to worry about that. I basically slept, sat, and stared for the 7 weeks during radiation.

I am pretty confident tho, that the people at MD Anderson can and will help your brother out...

p

katenorwood
Posts: 1863
Joined: May 2012

Babs,
All great advice above....but remember to check with CSA too ! The hospital should have any #'s the family needs. They have great resources for treatments ! Katie

Grandmax4's picture
Grandmax4
Posts: 597
Joined: Dec 2011

one year and one week out from de vinci robot surgery that removed my epiglottis and lymph nodes in my neck..thankfully, the surgery removed all the mass and the nodes were beneign so I did not need chemo or radiation. I was in the hospital for 8 days and they wanted me to go to nursing home, but I opted to come home..my husband took a week off, we sat up visits from a home health nurse and things went very well. I had a feeding tube for about 2 months, but they're easy to use and I learned to feed myself quickly.After 4 visits from the nurse, I felt confident enough that I ended her. I made a nest in the living room, recliner, phone, tv remote, and here I lived for about 11 months, I slept in the recliner because it was uncomforable to lay flat, I still sleep on a wedge pillow.
I know your brother is already set up for treatment in Texas, I went to The James Cancer Center ( now Waxner) at the Ohio State University in Columbus Ohio. A skillfull and kind surgeon and his team..Dr Ricardo Carrau. I'm very surprised your brother was given the details of his treatment, and after effects, that usually isn't the case.
I've rattled long enough, I feel your brother will be okay after treatment and will probably be able to travel home to recover.
Best wishes and prayers for all of you

Steve1958's picture
Steve1958
Posts: 8
Joined: Oct 2012

Hi Babs,

As Tim mentioned, I'm currently in Houston receiving treatment at MD Anderson for cancer that started in the tonsil. I'm going into my final week of treatment (yay!), but would love to meet with your brother and share my experience with MDA as well as my experience being in Houston alone.

If your brother is interested, private message me and I'll be glad to give you my cellular number so we can connect.

Best regards and blessings,
Steve.

BabsOregon
Posts: 30
Joined: Jun 2011

I woke up with the flu today (or whatever it is) and haven't done much but sleep. I very much appreciate all of the responses and will message those who agreed to talk to my brother - I think it will really help him. Thank you all. I will be in touch.
Babs

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