Break it to her gently?

Grandmax4

A friend of mine was just diagnosed ( 3 weeks ago ) with tonsil cancer..she has a golf ball size lump on a tonsil.
She has chosen to go with chemo and radiation at The James in Columbus Ohio.
Because I am recovering from robotic surgery, she seems to think I have all the answers and I don't, so here are the questions, the biggest one being~~~should I tell her
what I've read about treatment and recovery here? I sent the link, but she's not going to open until after her treatment or maybe during.
#1..is chemo and rad given at the same time?
#2.. she's planning on driving herself ( 45 miles ) for the first 3 sessions..has 7 weeks to go every day.
#3..will she need help at home, she says no
#4..after effects...

I'm sorta hurt that she didn't take my advice on Doctor and I've tried to tell her that surgery is completely different from chemo and rad so I'm not comforable answering her questions, can you all help me out

ratface

Generally speaking
I say general because people have experiences all over the spectrum but I will generalize more to the averages. Furthermore looking at your picture and screen name I'm guessing your friend is in a similar age range.

Typically, to get the most bang for the buck, radiation and chemo are given together. The synergistic effect is most effective. Radiation typically is given once per day. Chemo can be given daily, weekly, or monthly. The longer the span the higher the dose. Driving 45 miles the first three sessions should be possible , but again, if she is getting a monthly dose of cisplatin it will probably be an entire day affair of infusion and it can make you very tired. She may also experience a host of unpredictable side effects. I would urge her to plan to take someone along. Once she gets acclimated to the routine she can
re-evaluate from there. It would be tragic to to get in a car accident in the midst of treatment. There are sources available through the ACS for driving assistance.

A golf size tumor is fairly large and will require some aggressive treatment. My feeling is that your friend is underestimating the severity of the situation and in this respect the more honestly you present her circumstances to her the better she will be able to sort things out.

Will she need help at home? Does she live alone, have children, what are her responsibilities? Just taking care of a feeding tube can be a full time job. Again, your honesty and knowledge will go a long way to helping her with this decision.

After effects at this point are pure speculation, based on the tumor size it will most likely be a difficult time for her. You can cross this bridge together later. You are a good friend indeed.

phrannie51

Oh I remember when.....
In the beginning, when I'd been Dx'd, I came here and asked "was it possible for me to do this alone?". Many said no, some said that they'd been pretty much on their own, but from the middle of treatment on, they needed help from friends. I am SO grateful that I didn't try to do this on my own...I would have had to sleep in the parking lot at radiation from 3:00 everyday to 6:30 in order to drive the 6 miles home(keep in mind I was getting amifostine, and was very tired before I even went into radiation)...

Our Medical Center is a large campus, and the radiation place is on the other side from my Oncologist. On chemo days, they'd unhook me at chemo, then boot me out to go do rads, then I'd come back to finish chemo...so tho chemo and rads are given concurrently ... rads given during the same time span as chemo...you don't get them together on chemo days.

She might be able to go without help at home, but not without someone checking in on her several times a week. I know what she's thinking (I thought the same way)...but rads are so exhausting, and she hasn't a clue how tired she's going to be and how essential all the resting and sleeping are to get thru this.

I think if I were giving advice, I'd tell her how it was for me, and that everyone is different...but she might want to line some help out for possilbe need in the future...friends, family, etc.

p

osmotar

Treatment
Hi Gx4

I was dx with cancer of the rt tonsil in July 2012,my treatment mirrored Skiffin's , I had 3 all day sessions , one every 21 days of cisplatin, taxotore & a 5FU pump, then I went for 7.5 weeks or 39 sessions of radiation with a current chemo treatment of carboplatin for each week of radiation.I was one of the fortunate ones that didn't have any issues with the chemo/radiation & chemo, not everyone is so lucky. that being said I did have family here if I needed help, I was still able to drive, I did loose my taste around week 3 or 4 of rads, but other than that it was ok. Tell your friend to ask questions, keep notes, have someone go to doc appointments to make sure everything is answered or asked, the biggest factor is to be proactive don't wait for a symptom to get worse..stay hydrated , eat whether you can taste or not, ask about a PEG tube ..etc.

Linda

CivilMatt

what to do
Hi Grandmax4,

From what I know and what I’ve read (here) if chemo and radiation are given together you should plan for the bad side and be happy if it doesn’t get that bad. Even the most “gentle” of treatments may kick the heck out of you.

Driving, possible, not recommended. You need to gear up for treatments, leave the driving to someone else. This is a bad time to play the tough card and it could be dangerous. There are services to help you if needed, just ask.

Help at home, heck yes! If she thinks she is going to feel like doing anything other than sleep, good luck. I know some people here were able to keep working and I bless their ability, but you can not count on it.

After effects, surprise, you could line everyone up on this site and compare notes and while similar, we would be all over the map. Some are sleeping; some are awake, swallowing, not swallowing, lots of pain, no pain, etc…You can’t know until you cross that bridge.

Honesty and straight forwardness is the best policy. This more than likely will be rough and to be ready is a plus. Besides, what do her doctors say about all of this? Mine would have been concerned if I presented the scenario you have here.

Best of luck,

Matt

longtermsurvivor

dont be offended that she doesnt take your advice
in fact, a reasonable policy is to offer advice only when she direcly asks for it. We all have to walk our own road with this thing. And you dont need to be responsible for her. As has been suggested, we are all very different in our experience. With my first cancer I worked fulltime, drove myself, did my own housekeeping, made my own meals, ate solid food and in general, just carried on. Why I had so few effects I will never know. With my second rads, I drove 45 minutes one way evwry day, made my own meals, etc. You never really know how it will go.

best


Pat

nick770

I'm currently going got the
I'm currently going got the James for my TX i also ihad a large tumor on the tonsil unopporable my plan is 2 treatments of chemo first week and third week and rads concurrently for 6 weeks total of 35 rd treatments

So this may be similar to what she will be experiencing. Driving it alone is doable but I'd rather get rides


Is she going to have a peg tube? I would recommend sendin her to this forum the James does great work but there are always things thahappenn that this board has been able to help me with that they didn't mention at the James.

Try not too feel to bad on the advice on doctor when i was fx i had everyone giving me advice and sometimes it was too Much to handle

Grandmax4

I knew
I could depend on you wonderful people to give me advice.
She is a hard person to get to know, and it's not easy being her friend sometimes, then she turns around and does something no one else thinks of and makes me feel like a bad friend.
Anyway, I told her what info I have gotten from here, sent her the link...she says she is working on rides and has a sister she may stay with. That makes me feel better.
Can only do so much, I'm still recuperating myself and babysitting my 3 year old Grandson tho that's no problem 'cause he's so good.
Thank you all, I come here at least once every day...you all give me courage and hope..I've been thinking about NitaNita all day, hope she's doing good

Skiffin16

My Experience...
Like Splinter mentioned, we are all over the place, but here's mine...

I had tonsil cancer and a secondary lump behind and lower to the ear (same side).

Tonsils were removed up front, then allowing time for chemo/rads results to decide if tumor removal (dissection was needed).

Port Installed
Nine weeks (three week cycles) of Cisplatin, Taxotere and 5FU. The first two were given on Monday and has mentioned, a big portion of the day was involved....(take a lunch).

After all and the end of the day, a pump full of the 5FU was strapped on (fanny pack), and ran through the port. That stayed on until it ran out Thursday night, then removed Friday morning at the center. I usually received hydration then as well.

The following Monday I would receive an injection of Neulasta a blood cell generator that acts within the bone morrow... the first week of that was like having a bad flu. All major bones were achy as the back and spine, but it only lasted that first week for the most part.

The remainder of the two weeks was just recovery, rest and whatever. I worked form home the entire sixteen weeks of treatment (computer related work).

The tumor actually shrank, dissolved whatever...never lit up again either, so no dissection.

Then I started con-current chemo/rads for seven weeks.

Carboplatin every Monday in the morning that lasted only a few hours. Then radiation every day, lasting maybe thirty minutes with only 12 - 15 for the actual IMRT radiation.

My wife always attended the big chemo sessions, and most of the smaller. I could have endured driving, but wouldn't want to unless I had no choice.

The days of radiation only, I drove myself to most all of those, no problems..even taking the Xanax for the first few was not a problem.

She may not actually NEED help at home, but it's always nice to have someone there. Even though I usually saw this as a love hate relationship, LOL...

I wanted someone with me, I just didn't want them with me...LOL. I was easily annoyed and pretty grumpy.

But half way through rads life does become more difficult. Eating sucks, strength is down, grump level is off the charts.

It's hard to do much of anything strenuous as you have minimal energy. It's mainly a time of sleeping, taking in hydration and calories, going to treatment, sleeping...repeat pretty much every day.

BTW, I don't think there is going to be a breaking to it gently...unfortunately it is what it is. Realizing that you have to be in survival mode as soon as possible is big.

So be understanding, but also stress the importance that this is life threating....you do what you have to do to survive. Both cancer and the treatment.

No need to make it any harder on yourself (her), than it's already going to be...

My experiences....
John

nwasen

Grandmax4 said:

I knew
I could depend on you wonderful people to give me advice.
She is a hard person to get to know, and it's not easy being her friend sometimes, then she turns around and does something no one else thinks of and makes me feel like a bad friend.
Anyway, I told her what info I have gotten from here, sent her the link...she says she is working on rides and has a sister she may stay with. That makes me feel better.
Can only do so much, I'm still recuperating myself and babysitting my 3 year old Grandson tho that's no problem 'cause he's so good.
Thank you all, I come here at least once every day...you all give me courage and hope..I've been thinking about NitaNita all day, hope she's doing good

gently
My treatments were at the James. I live alittle over an hour away and stayed with friends for the whole 7 weeks. Mine was base of tongue stage 4
I had 35 radiation and 7 chemos...mine was 5 days a week for 7 weeks and chemo on Thursdays after radiation.
I am a 62 year old only child with no parents living. I figured out before treatment that things might get tough so I had rides to and from each day even tho I was only living 10 minutes from the James. I did walk my friends dog on my good days but was afraid if I got weak that driving might be a bad idea.
You know what they say; You can lead a horse to water but you can't make them drink.
This board is a great place to glean info. I only found out about it after treatment and wish I had found it before. Do what you can to get her to at least read even if she doesn't choose to post.
Good luck to your friend and sounds like you are a good friend to worry and care so much
Nancy aka toughcookie