#60219 01-30-2007 03:44 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | OP  Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | One month ago (duh) I posted "How I am 4 months post Tx" and I didn't expect to give an update so soon but something has happened to change my mind. I will first start with the 4 month post for those that didn't see it:
Today marks the end of the 4th month after completeing my Tx and I thought it would be useful to others to post my progress.
Taste-I have almost all my taste back. I would rate it 9 out of 10.
Hair on the back of my head-Beginning to grow back.
Weight-Lost 35 pounds and have regained 5. Not sure I want much more back.
High frequency hearing loss-Was tested at Moffitt and they confirmed permanent HF hearing loss caused by Cisplatium. MO wasn't so sure and said to wait. Either I am getting use to it or it has slightly improved.
Mental capacity-Fully recovered or I'm worse off than I think. LOL
Physical-Muscle strenght 7 out of my 10. Haven't exercised like I use to due to dry mouth.
Stamina-Am able to almost work as much as I use to. Work 9am to 7:30pm. Use to work till 9pm but I am pretty tired by 7:30. Can't keep my eyes open by 10 to 11pm.
Turkey chin-Gobble, gobble, still have it.
Dry mouth-This has been the worst side effect to deal with by far. Not in pain but in affecting quality of life. Just in the last 2 weeks I have noticed a slight change for the better. It's hard to describe but it has improved. I would rate this 9 out of 10 being the worst.
All the other side effects I was dealing with at the end of Tx went away around the 3rd week post TX. Those being: nausea, throat pain, constipation, and maybe a few that I can't even remember now.
All in all I am very pleased with my progress especially considering the way I felt at the end of my Tx and I hope that others who are currently in or recently completed Tx will find this useful.
That was one month ago.
As I said I wasn't planning to followup so soon but just in the past 2 weeks something has improved with my dry mouth. I say something because it's hard to define BUT it has made a great improvement in my eating. I still sip water throughout the day but I don't wake up during the night with mouth related problems any more and my eating has taken a hugh turn for the better. I even look forward to meals now as I am beginning to try some of my old favorites that I had given up on. For instance, I ate a small thin crust pizza by myself the other day (well not all the crust) and I even ate a whole slice without having to swallow liquid. I find myself eating almost like normal, I mean taking 2 or 3 fork fulls before I feel the urge to drink. I don't think my taste has improved but that dry mouth crap has.
It's really hard to describe but something has happened and I wanted to share this improvement so that others may be on the lookout.
I also just had my first birthday post Tx. Kinda wierd but I plan on getting used to those.
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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#60220 01-30-2007 04:10 AM | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 446 | Good news David! It gets pretty frustrating at times, waiting for things to improve even a little bit. When they finally do, it really is reason to celebrate!
I'm finding that my dry mouth is somewhat better as well, although I don't think the actual dry mouth has improved. I have a close relative that is an oral surgeon,and he's been monitoring my progress REALLY closely ( it's great having your own medical team stopping by the house twice a week to check up on you!)
He said that things look pretty much exactly the way they did two months ago; the improvement is as much mental as anything, in my case anyway.
The new "normal" for me is something that I'm starting to accept more completely. It frustrated me a lot initially, not as much now. I think that acceptance has a lot to do with it
Keep on getting better! BTW, Happy belated Birthday!
Wayne
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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#60221 01-30-2007 04:56 AM | Joined: Sep 2006 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2006 Posts: 493 | David,
Happy Birthday. Great news on the dry mouth. I look forward to mine getting better. Great job on the eating. Our situations our very similar that's why I look forward to when you pass milestones, cause' Im not that far behind you.
Take Care
Tim
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.
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#60222 01-30-2007 05:02 AM | Joined: Jan 2007 Posts: 108 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jan 2007 Posts: 108 | That is great news. You are doing much better than I was. Took me 14 months to regain the full saliva and be able to eat a few bits without sipping water.
T3N2aM0 SCC right oral tongue. Partial Glosectomy, Modified Neck disection for 1 Lymph Node. Dec. 2002. 35 IMRT 2003.
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#60223 01-30-2007 06:13 AM | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 583 | Hi David, That is great news. That is what happen to me as well when I was around 5 or 6 months. It was just so suddle but could tell something was better. So I know the feeling that you are talking about. Yes, it does make you feel like your almost NORMAL.  Happy for you.. Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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#60224 01-30-2007 07:35 AM | Joined: Oct 2006 Posts: 160 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2006 Posts: 160 | David, Good news, and a very informational post. I am one month ahead of you, and would say I'm about where you are. So much difference in my level of energy in these past 2 mos. I also am eating much better, and enjoying food again. Take care, and keep posting your progress. Happy birthday!! Linda
Dx3/20/06 SCC,BOT,1N Tx:5cycles Carbo/Taxol, Rad:35x, brachytherapy:6x, completed 7/24/06
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#60225 01-30-2007 01:54 PM | Joined: Sep 2006 Posts: 3 Member | | Member
Joined: Sep 2006 Posts: 3 | David, thanks for the info.I am 10 weeks out of treatment and trying to eat again, I never realized it could be so hard. My tongue is very sensitive still and maybe I'm pushing this eating too soon.
Your post gives me a lot of hope. Thank you.
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Paul
Age 68, SCC left tonsil,Rad 50x with chemo. | | |
#60226 01-30-2007 05:45 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hi David,
That's awesome and Happy Birthday.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#60227 01-31-2007 12:21 AM | Joined: Sep 2006 Posts: 22 Member | | Member
Joined: Sep 2006 Posts: 22 | David,
So happy to hear about your progress. I did not think I had any dry mouth issues until I started exercising. When I am running or cycling my mouth instantly feels like the Sahara. I am forced to drink water much more often but I guess that is not such a bad thing when participating in endurance activities.
Anyways, keep it up and cherish this step forward.
Gary
SCC left Buccal Mucosa (cheek). Surgery with Modified Radical Neck (23 lymph nodes - all clear). IMRT x 30. Finished tx 11-21-06
"Don't give up, don't ever give up!"
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#60228 02-04-2007 07:07 AM | Joined: Jul 2006 Posts: 109 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Jul 2006 Posts: 109 | David that is great news and "Happy Birthday", how is the gobbler? Did the excercises work for you, i hope they did. Im not far behind you, and im glad to hear it gets better and better everyday! Congrats again! | | |
#60229 02-05-2007 09:41 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Linda,
The gobbler is still with us although not as big as it was a month ago. Since everyone tells me I look great (I was always used to that) I haven't given it much thought. In fact, if I look that great maybe I want it to stay. LOL
Thanks for asking.
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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#60230 02-05-2007 01:09 PM | Joined: Oct 2006 Posts: 209 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Oct 2006 Posts: 209 | Great news David!
You are one month ahead of Mike and hopefully he'll be following in your footsteps!
!!!!!!!HAPPY BIRTHDAY!!!!!!!
Ginny
Ginny, spouse of MikeG. SSC BOT T2N1M0 Stage III, Dx 06/27/06 at age 52, Tx 07/31/06 through 09/28/06 Chemo Cisplatin & 5FU x2, Radiation x42. Cancer free and doing well.
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#60231 02-06-2007 02:26 AM | Joined: Aug 2006 Posts: 294 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Aug 2006 Posts: 294 | David,
I'm jealous! I finished Tx about 6 weeks ahead of you and my taste buds are nowhere near a 9 out of 10. I might be a 5 of 10 if I'm lucky and I would say this is still my biggest problem. I lost a total of 40 pounds during Tx, from 185 to 145. I have just within the past couple of weeks moved back up to 150 and may actually try and stay at 160 when I get there. That's a pretty good weight for 6'0".
Nothing tastes exactly like it did before and I still cannot tolerate sweets which I was so fond of in the past. Chocolate tastes horrible and any type of baked dessert automatically tastes burned. A Coke tastes like pure Coke syrup and corn on the cob tastes like someone sprinkled sugar all over it. I am sensing too much sugar flavor in things shere you wouldn't normally taste it such as corn and any type of bread/cracker type food. I can't seem to get much salt flavor no matter how much I salt something. I read recently where taking Zinc Sulfate can help restore taste bud damage from radiation and I am now trying that. It is suggested that 2 to 3 220mg tablets be taken per day.
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.
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#60232 02-06-2007 04:27 AM | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | OP Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Bill,
There is a natural sweetness to corn and if you can "taste" it don't underestimate that ability. I "taste" the sweet in sweet corn now and I enjoy it. I don't even put salt on my corn anymore. Salt isn't good for you anyway so we still need to watch what we eat.
Yes choc taste bitter now but not in all choc things for instance I still enjoy choc chip cookies.
I was never a soft drink drinker anyway so I haven't even tried one post Tx.
Hang in there.
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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