#97953 06-23-2009 05:55 AM | Joined: May 2009 Posts: 27 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: May 2009 Posts: 27 | Is today. Last chemo was last Tues. I have been dehydrated most of the time. Tries patch last week become very ill so stopped. Went to slower pump which has helped nausea. Still not sleeping, sore throat, sore lose stool but it could be much wose. How long does sleep stay away? How long till feel like trying to eat?
Age 63, occasional drinker, smoked for 40 years Base of tongue, stage 4,T-2,N2B Cisplatin 1xweek 30 RT ended 6/25 PEG removed 8/23 PET Scan shows scaring but believed no tumors 9/25
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | If you are like most of us things may get a tad worse for the next 2 weeks and then one day you will wake up and feel just a tad better but something will tell you that the worst is over. I called that walking out of my dark tunnel. I walked out in my 3rd week post Tx. I still had some bad days but slowly the good days outnumbered the bad days until finally no more bad days.
Taste and saliva improvement, which I think go hand and hand, will take a very long time to return to anything like pre Tx normal. I started to see some improvements my 4th month post Tx and by my 15th month I was satisfied that if I didn't improve anymore I could live with it.
Everyone can be different, especially because the radiation target fields can be different so you will just have to be patient and see how you turn out.
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.
| | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Aug 2008 Posts: 716 | I had to go on Ambien in order to sleep. I would be awake 20 to 22 hours a day....I couldn't fall asleep.
Ditto with what David said...
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer 8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35 11-4-08 Recovering & feeling better | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Watch ambien if you try it. I had 2 bad experiences with ti and tossed it. It seems it makes a lot of people walk in theier sleep and do strange things, like removing clothes and the next morning wondering wht the hell happened to them. I found my shirt I sleep in in the bathroom one morning and the next, at the front door. I live in a split entry home and there is a wall then a drop to the basement. That cured me of ambien. I called my Dr and she said she should have told me about some reactions to ambien. It was about 14 months before I fanally started to get a couple of hours sleep at a time. Good luck.
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
| | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | David's right about the really slow recovery, while for him it was a process of weeks, for me it was a slow process of months. It will get better with time though, so live each day expecting the next to be better, if only slightly so.
As to sleeping meds, I take Ambien CR occasionally, particularly when I am on the road lecturing and have trouble with wildly different time zones and unbelievable early morning schedules. I haven't had the problem Jim has had, though those have been reported in portions of the population of millions of people that have taken it. You won't know if you don't try it. But there are other meds that have been around for decades, like diazepam (Valium) that are well tolerated and have minimal reports of negative side effects. To give you some idea how long diazepam has been the drug of choice, it was the drug the Rolling Stones were referring to when they said it was "mothers little helper" .... back in the 60's.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
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