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#131026 03-09-2011 09:30 PM
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Everything I read never said I would be wipped out all week long. I have 33 treatments and they said due to me doing both of them I will only get worse. They chaged one of my Chemo's and its helped some. I stay so wipped out how do you cope with that. 7 weeks in bed is a long time and the Dr said radiation will stop working 2 months aftr treatments are over.
any smell makes me sick. I lost 9 lbs this week. anything sweet (and I LOVE Dr pepper) everything is too salty. Luckly i dont have the matalic taste as of yet. Any avice?


~Linda JO~
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What rad Tx are you on?

Tell us more about your Dx.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Linda Im sorry you are having such a difficult time right now. Everyone responds differntly to every kind of medication, treatment, etc. Please add a signature line so we know more about your diagnosis and can help you easier. Its under the my stuff tab, click on profile and scroll down to the bottom and type in the box. Hope today is a better day for you.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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This is bound to make you tired and the only cure is to force yourself out of bed and be as active as possible. The tiredness will last much longer than the treatments so it's up to you to do your best to remain with as normal a life as you can. Good luck thru this and I'm sure most of us have that tired worn out feeling long after the rads and chemo have stopped.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Two chemos? Or Chemo and radiation? I didn't know they would 2 of either at the same time.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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My husband had 2 types of chemo (Carboplatin and Abraxene) as part of a clinical trial 1x a week for 7 weeks and daily rad treatments. He had a really hard time - awful pain and exhaustion but luckily was never really had nauseau (had 3 drugs to help with that). He was hospitalized for pain management for a few days and because of the medication he was "out of it" a lot. He is stillo on methadone, dialaudid and neurontin even 2 weeks post treatment. He is doing much better already though. He is not as tired and he can talk more and is able to drink some and walks around the neighborhood at least once a day. It was the longest 7 weeks but it does get better slowly.


Jill..CG to Ken, age 43,mom of 1yr old girl.
DIAG:12/9/10 SCC BOT T4N0M0 HPV+
START:1/3/11 IMRT dailyX35 and 7 chemo
END:2/23/11 PEG IN:1/15/11 Out:4/26/11
CT/MRI 4/25/11-marked improvement CT 6/11 new spots
BX 6/23-cancer present
Total Glossectomy sched 7/20/11
7/19/11 Ken's suffering ended
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Linda,
You need to get out of bed and take a walk around the block a couple of times a day. Doesn't have to be a long one but if you don't you are going to lose a lot of muscle. The weather should be getting nicer, so the fresh air should help. Hope you are feeling better soon. Here's to a speedy recovery,

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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I agree with what everyone else has said; the importance of getting even a minimal bit of exercise. Also, stay hydrated! that was the single biggest problem I had during rads, and every time I wound up being admitted, it was due to dehydration.
Rads alone is tortuous; for me it was FAR worse than the surgery was, and I had a LOT of surgery. Some days it was getting by minute by minute, no question.
But...you will get through it. Set a goal tomorrow to get up, get dressed by yourself, and walk from your front door to the street and back, twice. Reward yourself with a liter of water.

Do the same thing the next day, or push it up to three round trips. You'll be quite surprised at how helpful it is.
Much luck!


SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
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One of the chemo nurses told me that chemo induced fatigue was different and that the less you do the more fatigued you feel. She said that the fatigue is diminished with activity rather than worsened. In an effort to try to believe her theory, I walked around the block even when I felt like I could sleep the entire day away. She was right, I always felt like I had more energy after a short walk and found that I could even do a few things around the house - not much, but enough to keep the house somewhat put together!

Take good care - this is the rough time - it will get better!


Jennifer (39)
02/10 SCCa Tongue & Base, HPV-
03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out
Back at work and feeling good 03/24/11!
12/20/11 - 9 month f/u PET/CT - all clear!
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Fatigue from RT and ct are well known side effects of Tx as well as weight loss. The average person takes one week of recovery for every week of treatment. What Eileen suggests is the best thing you can do - nothing rigotous, just a daily walk, as long as your caloric intake supports it.

It's also weird when your sense of smell in heightened yet you can't taste anything. Many of us couldn't stand the smell of food cooking.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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