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SusanW #116836 05-17-2010 05:51 AM
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Susan,

I'm not a doc but our body is at war on many different fronts (cancer, chemo, radiation, side effects, healing, etc.) so I assume it's expending tons of extra calories attending to these in addition to normal daily requirements.


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.
SusanW #116837 05-17-2010 07:58 AM
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Susan,

I think my dog was the last creature on earth that was still relying on me to take care of him.

I was surprised to see that you are waking Dave to eat. That would have seriously pissed me off. My wife made sure I got my calories, but only when I was awake.

I had the same issues with the eustation tubes in the ears (they swelled). That goes away after a while but it was really annoying to have that stuffy head feeling with the ears. I was worried about flying but was able to do that about two months out.

About gaining the weight back; I am now a very sinful eater, loads of butter, high fat meats, whatever I can get to put on some pounds. I am now at the same weight as I was pre treatment. I maintained my weight through treatment but lost about 10 pounds in the three weeks after treatment ended. I have just now gained that 10 back.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
SusanW #116840 05-17-2010 10:13 AM
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My worse week was actually my last week of TX. The first week of recovery was just slightly better. After a couple weeks improvements came pretty quickly.

I also lost my voice towards the end, but I could still squeak! Within a week it returned.

Post TX, getting back to eating solid foods was my biggest struggle and it took several months before food tasted decent. For me, taste returning was a very gradual process and sometimes down right depressing.

I never seemed to need extra calories to hold my weight. About 2400 seemed to do it. But, after my PEG was removed I had problems eating and my weight dropped for a while.

It also took a few month to get over bouts with the dry mouth (particularly at night).


Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11

DonB #116847 05-17-2010 12:39 PM
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Susan, glad to read that Dave has finished RT. Congratulations!

Ok, now for the rest. Everyone has had excellent advice and comments and I second them. The fatigue thing is killing (er, not in the absolute sense, you understand) so don't worry about it. I was literally flat on my back all last summer after finishing RT around June 1st. No engery, nuttin'.

Like my namesake David, I'm nearing a year post-radiation and I still haven't gained any appreciable weight back. Maybe 5 of the original 30 that I lost, and that was months and months ago. My docs aren't concerned and neither am I. I'm not losing any more and that's what's key. So Dave not gaining weight yet doesn't surprise me.

Other dittos:

Hearing loss (I've had fluid in the right ear for a year and it ain't going anywhere)

Voice - I couldn't speak at all for the last few weeks of RT and a good month afterward, and my full voice didn't really return for a good 6 or 8 months.

Mucous - horrible. Tons during treatment and only a gradual lessening for many months afterward.

Pain: yep. I kept the Oxy bottle verrrry close by.

But the worst will soon be behind him, and you. You didn't mention nausea, which was my main complaint for months, so I'm assuming it isn't an issue. So glad you have dogs. They're the greatest. My dog was about the only thing that got me through serious depression a dozen years ago, and my neighbor's two dogs have been great companions for me this time.

Keep us posted.

Courage!
D2


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
David2 #116854 05-17-2010 02:08 PM
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I also lost my voice for some short period of time. To this day my wife still says those were her best days of our marriage. B*!^h.


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.
davidcpa #116858 05-17-2010 06:40 PM
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Posts: 235
SusanW Offline OP
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The MD seems to share the attitude here about weight so between here and her I'm mellowing out about it.

I confess I was waking him up this weekend. He slept so much this weekend(he's usually pretty good about his own schedule). I bet he was calling me every name in the book but with no voice he had to do it all in his head(a new form of marriage counseling. LOL).

He ended up with a fever this weekend(which explains the sleeping) and we ended up in the ER. What an experience. It wasn't connected to Sloan and was another advertisement for making sure you go a CCC when possible. They knew squat about CA. They put him down as being there for a sore throat because he was hoarse. Plus they were much more concerned with the person who was shot in the butt. They put the hospital on lock down in case it was gang related. It wasn't the least bit helpful medically but it wasn't boring.

Anyway, thankfully we saw his MD today. He is on antibiotic as a precaution(she thinks it's viral)and no more fever. Phew.
But tomorrow he goes for a transfusion because his hemoglobin is low.
Haven't heard that mentioned here. Anyone else experience that? She said it will help his energy and the healing.
And with all that she is very pleased with his progress. Go figure.
But I do see some improvement in the last two days myself.
He hasn't had any queasy or stomach issues throughout this. Hold on, I have to go frantically knock wood...
Pain is there but better. little by little...all in the right direction...

Last edited by SusanW; 05-17-2010 06:43 PM.

CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
davidcpa #116877 05-18-2010 09:02 AM
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David, that earns a badda-bing!


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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