Monday my doctor asked me if I wanted to take a break for two weeks but he did not really recommend it. I said no that I would see it through to the end which at that time was this week, next week and 1 day.
Well today the rad tech says Monday you have to see the doctor first because I am afraid he is going to have to stop you for a while because of the condition of your neck. My neck see has fat cells oozing out of it and the skin looks melted kinda. Just in the hollow of my neck though. The rest is just a beautiful maroon color that would have gone with my eyes when I used to get drunk.
Back to serious......I do not feel comfortable taking a break. Is there nothing they can do to heal it up any? I am still using the Biafine and the V gel pads so its not dry. Its just that one lousy spot. Did anybody ever have to take a break because of this kind of thing?
God bless,
Barb~
Barb, my neck and jaw were nasty, oozing open sores and I just took more pain pills and finished. No one gave me the option of taking a break, and it all healed with no scars. Because we take weekends and holidays off,though, I don't think a couple days of break will make any difference in the long-term results, and it might help your poor neck a lot. And you ARE getting close to the end of treatment!
Thanks Joanna (my daughters name by the way
)I have next week and 1 day so 6 more to go. I just would like to get it over with you know? I am tired and I am going to the country to my sons for a few weeks rest after the last treatment. They are talking 2 weeks break and there is no way I am delaying this another 2 weeks.
Oh I feel so bad for you Joanna. I hope you healed up quickly. This disease stinks and the treatment stinks. TG for the roses.
Bless you,
Barb~
Barb,
There were a couple of times when my RO allowed me a break of a day or two (in my case it was due to the severity of the sores inside, not outside). As I recall, he wasn't willing to go any longer than that before resuming.
I hope you can get some relief over the weekend and be done with the nasty stuff sooner rather than later.
Cathy
Radiation is cumulative so unless they will be starting to radiate a different area on Monday, taking a break may mean they will have to add extra treatments at the end and you don't want that. See what the dr says on Monday and how you feel. I'd tried to get it over wuth if you can.
Take care,
Eileen
My open sores were so bad the radiation nurses were asking if I had shingles. Actually in my case, the Iressa made the breakout on the back of my neck worse. It was nasty nasty nasty. I noticed today that the hair I lost on the back of my head is finally starting to grow back and it's interesting as it's a little patch of half inch fuzz.
I can remember being oh so miserable by the end of radiation, but thankful to push on through to the end. It was pretty yucky for about a month after radiation ended too, but it felt good just to put those daily radiation appointments behind me.
Barb, I'd get it over with. As miserable as all of this stuff is, my mindset is always to get all the bad stuff done, over with and most of all BEHIND me.
Jen
I think I am going to try and go on. My neck is bleeding some tonight. It itches really bad but that 5% cortisone script takes me to the moon in pain.
I believe I will ask him if there isn't just something I can use at night other than the Biafine and the Vigilon pads. I am so afraid of an infection. The thing is now from the hollow of my neck to almost untder my chin. Its white scaley looking stuff that is stringy. It is so weird looking. Tonight though I noticed some blood spots on the jelly pad and that kinda blew my mind away really quick.
Love and hugs,
Barb~
Barb,
I support others' view that taking a break may not be wise unless you really can't tolerate the pain. I would put the whole nasty thing to an end asap.In my last 2 to 3 treatments,( I had 48 rounds!) most of my neck was burnt and bruised with blood. I shed tears every time my mask was fastened tight to my neck. I remember they covered my neck with some 'Glad Wrap' (the one we use to cover our food to keep it fresh). It didn't help much. When the nurse announced that it was the last treatment, I gave them a broad smile which they said had been missing for a long time.Neither had I been given an option for a break other than the usual Saturday/Sunday. There wasn't any medication for me to heal up the neck, either.So you can weigh the pros and cons of delaying the treatment before discussing with your doctor.
By the way, you need not feel bad for Joanna. I know she is doing very well.
Karen
Okay. I will go on no matter how bad it gets. I want to so now if the doctor lets me it will be over and done. I hope the week goes fast but like when we are waiting for something we really want it will drag on and on. Know what I mean?
I am going to wear the Vigilon pads all weekend and see if it helps. I rinsed my neck this morning, dabbed on the Biafine and applied a new pad. I am going to do the same around 7 tonight. I have upped my protien intake as protein rebuilds tissue so I am on a mission! I will let you know Monday if it worked.
Love you all!
Blessings,
Barb~
Barb --
Our radiation oncologist resident at Hopkins told us that every day you stop treatment, you can lose 1% effectiveness (or even more) -- OK, I don't have any reference for what he said but if it's anywhere near correct, that's a good reason to try and avoid unscheduled breaks. That's also why our rad team is so concerned with controlling acute side effects so Barry won't have to take breaks -- but who knows, you see from this forum that some people seem to go through OK and some have lots of problems, getting same radiation dose etc.
As they say, "hope for the best and prepare for the worst."
Gail
My doctor feels the same. He wants me to go as far as I can even with this neck. I see him every Monday and its much worse now than last Monday. I believe he will not stop unless the skin falls off my neck. I am just taking it one day at a time. That is all I can do right now.
I know what you mean though Gail. My neck was in perfect condition and last Monday I got up and it was a whole new ball game.
Cancer sucks!
Gail, Do they treat people at Hopkins on the major holidays? Just wondering--it was interesting to hear that statistic about losing 1% or more effectiveness per day. I ended up having two days that were breaks from my normal schedule--but neither were because I was having an acute reaction. One was Memorial Day and one was a day when apparently teh whole machine went whacky and had to be reprogrammed and triple-checked before using it to treat anyone again. I've heard neither of these things are unusual during treatment--holidays and issues with machines working (especially, apparently, if you are having IMRT) but I'm wondering if maybe they are not done at the top places. there are so man y little things like that that could make all the difference. You're lucky Johns Hopkins is in your backyard!
From what my doctor says its not a day or two that will hurt you its a week or more. The skin is falling off my neck. It would take a month for it to heal I am sure. I am kinda miserable tonight. Will let you all know how things go.
I am not in a famous CC but I am in the hands of God who is a much grander and wiser physician than mankind so I am not worried about it. What He decides will be the end result no matter who treats me here in the world. My sister-in-law went to the Mayo Clinic and died anyway. My friend went to General on welfare , had both breasts removed and a great number of nodes and is now a 10 year survivor so far. Its not in our hands in the end.
Blessings,
Barb~
No breaks are fine if thats what you need and thats what your doc orders.
on the other hand, i was treated at one of the major US hospitals and it is not uncommon for folks to get a break during 7 weeks of radiation. at week 4 i was given a two week break, during which i made a speedy recovery. so i was just barely able to complete the last 3 weeks without another break.
i was getting both chemo and rad at the same time, so perhaps that's why the break was more common.
bottom line, it seems to have worked just fine for me since i'm still here and doing fine 4 yrs later...
without the break, i would have suffered tremendously! i think the break helped me, i'm sure i needed it.
cu,
larryb
No, Hopkins doesn't do radiation on major holidays -- far be it that anyone misses their holiday <gr> -- I think what the rad onc meant was missing more than a day or so -- like a week -- and as I said, I haven't seen his references yet! (Being a scientist, I like someone to back up statements like that).
But they do seem to go way out of the way to avoid people needing to take breaks --
Well, Barry starts week after next so we shall see how it goes...
Gail
At least you know you'll get a long weekend on labor day <gr>
Barb,
I hope you are not using the Biafine on the open wound. It is my recollection that is NOT to be used on any open wound. It is a marvelous healing cream for burnt skin and post surgery, but the wounds have to be closed.
Hope you feel better soon.
Eileen
Well doc said today that there is much research going on now into whether the weekend breaks are detrimental to the treatments. Blah. I would hate to do this 24/7 wouldn't you? Anyhow I am now using the Biafine on the sides and chest area (which is small) and a triple antibiotic cream on the rest which is what they use at the Shriners Burns Institute for Children.
I put that on and it was like instant relief. Only thing is the Vigilon pads keep sliding off my neck right out from under the ace bandage. hahahahaha He offered me some pain meds but other than the neck getting stiff and sore when its "dry" it is otherwise tolerable.
I have 5 more to go. 5!!!!!
God bless and keep you,
Barb~
5-4-3-2-1- LIFT OFF FOR BARB!!!!!!!!!!!
Sunshine.. love and hugs
Helen
That's great Barb. I'm off on a vacation til the 10th. Will think about you though. Get this over with and out to the country to recoup.
Take care,
Eileen
Barb and Gail, Just before my last week of radiation the machine broke down and I had one week off while repairs were made. My radiation Oncologist said that there would be no difference in the outcome by stoping for a week that late in the treatment. However he did say that if it were in the first weeks I would have had to travel to another facility because stopping early in the treatment cycle would be a problem.
I too am not in a position to back up his comments with expert data, but I do know that a serious malpractice claim would result if indeed I was shortchanged some 7% of potential success by their machine breakdown for a week. I know that stopping was a problem for me because I just started to feel better when I had to go back for those last treatments and feel bad all over again.
I would think that is true Mark since doc said things would still be going at full speed 2 weeks after treatments stopped.
That cream is doing the job. I do have these weird grayish looking sploches on the right and left saides of the entry spot. I am just going to go one day and then another day and if I have to stop 2 treatments short then I will.
I don't know. Its confusing to say the least. I just hope its dead and gone forever and I hope, Mark, 4 years and 5 months from now I can post the same in my siggy line as you. How great it must be to be able to say that. You rock buddy!
Blessings,
Barb~