#45294 07-30-2005 03:18 PM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | OP  "Above & Beyond" Member (300+ posts)
Joined: May 2005 Posts: 497 | 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!
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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#45295 07-31-2005 03:33 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | 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!
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#45296 07-31-2005 11:35 AM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | | OP "Above & Beyond" Member (300+ posts)
Joined: May 2005 Posts: 497 | 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~
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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#45297 07-31-2005 01:57 PM | Joined: Apr 2003 Posts: 136 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Apr 2003 Posts: 136 | 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
'01 diagnosis.. jaw hing and base of tongue. surgery not possible. JHU used radiation and chemo to seemingly rid me of the beast. peg for about 19 months. 100 cases of 24 cans of liquid food. 9 months eating therapy. 3x esophagus stretches. non-smoker. previously a social drinker.
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#45298 07-31-2005 03:12 PM | Joined: Jul 2005 Posts: 624 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2005 Posts: 624 | 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
CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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#45299 08-01-2005 02:46 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | At least you know you'll get a long weekend on labor day <gr>
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#45300 08-01-2005 06:53 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | 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
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#45301 08-01-2005 08:00 AM | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | | OP "Above & Beyond" Member (300+ posts)
Joined: May 2005 Posts: 497 | 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~
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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#45302 08-01-2005 08:10 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | 5-4-3-2-1- LIFT OFF FOR BARB!!!!!!!!!!!
Sunshine.. love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#45303 08-01-2005 10:22 AM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | 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
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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