#69249 02-04-2008 12:46 PM | Joined: Oct 2007 Posts: 35 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Oct 2007 Posts: 35 | Hi All,
I've been in a funk for the last 3 weeks, with not much interest in anything...but I'm finally starting to feel better.
From my last post, I was very very distraught because the RO thought I had another cancerous node based on a CT and PET. Then I had a CT guided biopsy (a very unpleasant experience). The good news is that the results were "normal", no evidence of cancer. Thank God. Must have been a false positive, of maybe a medical miracle...I tend to think it was the latter.
I finished my last tx on January 17th. Since then, things went downhill for a few weeks, especially with fatigue and pain.
Now, I feel like I'm on the mend.
I've lost 30 pounds, and now weigh about as much as I did junior year in high school.
My voice is still messed up, but it seems to be getting better.
My right ear is dry...no ear wax. I view this as a big deficit, as I know ear wax stops infections.
I'm able to eat pretty much anything now, as my mouth is no longer tender. It takes a very long time to chew the food up into fine particles.
My throat is still sore, and I'm still on the fentanyl patch. These patches are nice for pain, but the constipation is tough to deal with.
My beard hair is gone in patches that were exposed to the radiation. Ditto with the bald patch on the back of my head.
My scar from surgery is healing nicely and soon will hopefully be even less noticble.
I get tired easily...the RO said I would not have fatigue...he was WRONG.
I don't think I could have tolerated another week of treatment without resorting to a PEG tube...
My taste is pretty much gone, I can only get a very small hint of taste. However, salts and sweets I can't taste at all.
I still wake up in the night to spit out grotesque mucous, but the frequency is dropping to 2-3 times per night. This is a big relief, as I was waking up every hour or two to spit to keep from choking.
I swallowed a vitamin yesterday--this is the first pill I had since almost choking on a pain pill about 6 weeks ago.
In all, I missed about 3 weeks of work during the tx.
I'm looking foward to feeling better, exercising and eating right.
I'm thankful that this is almost over...I still have a way to go for recovery, but at least I'm over the hump and can be improving every day.
Jenna, I'm glad to see that you've made it through also--keep hanging in there.
I would not wish radiation treatment onto anyone, but it is curative and survivable. It is a humbling and painful experience.
My best to all,
Oscar
| | | | | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 Likes: 1 | Congrats Oscar
Keep up the good fight !!
Kevin
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | | | | 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 | Oscar,
You are right on schedule. Everything you're going thru is exactly what I was dealing with at 3 weeks post Tx and believe me you're out of that dark tunnel. However watch for the occasional day(s) when you wake up feeling rotten. That's also normal and those days will disappear in a short time. You will continue to feel weak for months and you will tire easily. I can't believe your doc said you would not experience fatigue...is he crazy or were you his first patient?
Cram as many calories and water into your body as you can as your body is in a serious recovery mode and needs fuel.
You made it and that's what counts.
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: Sep 2007 Posts: 18 Member | | Member
Joined: Sep 2007 Posts: 18 | Hi Oscar,
I'm glad to hear you're getting throught it. I was worried when I'd read your Dr's thought. I am still feeling pretty miserable. I'm 10 days out. I'm hoping things start turning around soon. You said you've been eating? But you also said you have no taste. How is that possible? I don't think I could chew anything without taste. I also have very faint taste, but no real salt or sweet. I can taste tea and coffee though-guess that's bitter. I've been forcing myself to drink those Carnation VHC drinks-not easy though, I'm trying to drink water too, but also a challenge.I've lost 10 lbs and I didn't have much to lose. I can't wait to resume normal eating and have energy again. I'v been out of work since October, not sure when I'll feel well enough. My Dr. said I should start to improve next week. I really hope so! I'm still spitting out phelgm, but less than I was, so I guess that's something.
No, I wouldn't wish this on anyone!
Jenna,46,non-smoker,non-drinker
diagnosed SCC tongue 9/18/07
patial glossectomy 10/22/07
IMRT ends 1/24/08
PET scan 4/16/08-all clear!
| | | | | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | You guys are doing great! Everyone recovers at their own pace but for the most part you guys are right on track. This was the toughest thing I've ever done. I won't lie to you each day was a challenge and recovery certainly doesn't happen fast. Keep on keeping on.
Tim
Last edited by Stoj; 02-04-2008 03:23 PM.
Tim Stoj
60 yr old. Dx Jun 06 with BOT Stage IV. Neck dissesction on 19 Jun 06. Started Tx on 21 Aug 06/completed 33 IMRTs and 3 CT (2 Cisplat & 1 Carboplat) on 5 Oct 06.
| | | | | Joined: Aug 2006 Posts: 294 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2006 Posts: 294 | Oscar,
It sounds as though you used the same schedule and check list as I had also! You didn't seem to miss a beat but I see that you at least got to skip the PEG. Honestly, you didn't miss much fun in that department, assuming you were able to get the nutrition you needed. Happy healing,
Bill D.
Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
| | | | | Joined: Jun 2007 Posts: 214 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 214 | Congrats on finishing---how nice that you didn't have a PEG tube!
Getting through this treatment certainly makes you realize that you are far tougher than you think! Take care!
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Great to here you are progressing,albeit slowly.Keep up the good work
liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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