| | Joined: Nov 2009 Posts: 212 Gold Member (200+ posts) | OP  Gold Member (200+ posts)
Joined: Nov 2009 Posts: 212 | Hi I was dianosed with SSC in July this year. I was a very healthy 58 year old guy. Quite active, I had 40 days of Radiation and 8 weeks of chemo, cimpactin and eubitrx. It was pretty tough, I was on lots of pain meds for about 8 weeks, patch plus morphine, It has been 9 weeks since YX and I am just OK. I still use the PEG for 20% or so of my cals. I have a very hard time drinking thin liquids like water. I drink alot od ensure. I did lose about 35 pounds.
By bigest trouble is fatigue. I am often so tired I can hardly move. It is quite frustrating and depressing.
I did start anit depresentants almost 2 weeks ago.
so that is me
70 male, athlete...again
SSC of undetermined orgin , early july 09
40 tx radiation, 8 chemo cisplatin and ebuterx
finished TX in mid Sept 09
Clear at the 6 year mark!
Back to swimming, biking and running! just a tad slower
never regained my weight, even when I eat lots and lots, just a skinny guy now
Just way glad to be seeing the green side up!
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF. The fatigue is a common ailment most radiation patients endure. Unfortunately it can linger around for months after treatment ends. Congrats on finishing your treatments.
ChristineSCC 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  | | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Tristeve and welcome to OCF.
I have not had the same treatment as you but I know from being on the forums here that what you are feeling is not uncommon. I'm sure other people will chime in about their experience with the PEG and how they used it. One thing I have learned is that it is important to continue to swallow and use those muscles. Do you take the Ensure in the PEG?
In reagrds to the anti-depressants...a lot of people take them. Cancer has a way of causing depression and anxiety. I take Lexapro. If you started taking them 2 weeks ago you're probably not feeling the full effects yet, they can take up to 6 weeks.
You did have a lot of treatment so give yourself time. You have found a wonderful group of people who are sure to help you and make you feel better. Knowing that you are not the only one makes a big difference.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Feb 2007 Posts: 77 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2007 Posts: 77 | Hi tristeve,
When I was done with treatment I was very exhausted. It all came on so gradually that if just felt normal. As time went on I very slowly gained strength, and it was so pleasant because I had forgetten what it was like to NOT be fatigued all the time.
I did keep active and exercised, which may have helped the recovery.
Best wishes,
Chris
SCC left tonsil, 2 lymph nodes, modified radical neck dissection, IMRT (both sides) completed 10/25/06, Erbitux and Cisplatin weekly, Ethyol daily
| | | | | 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 | tristeve,
I must assume from your PM to me that you are a biker and by your name possible a tri type guy. I also see you are 58 so perhaps you are just like I was when I went through my Tx.
I was riding my bike (still am) 100 miles a week and this Tx knocked the crap out of me. I was weak as a kitten for a good 4 months post Tx. I couldn't even lift a bottle of water to put in those coolers for months I was so weak. I did get back on my bike sometime about 4 1/2 months post Tx and I still had to much dry mouth to ride more than 7 seconds without having to sip water. Not competitive to say the least. Then came Tax Season and our BRUTAL WINTERS down here so it gave me another 5 months to recover and by then, even though I still had dry mouth conditions, as long as I didn't try to carry on a conversation I was fine. Over the next few months my stamina came back and actually I was a tad faster and went up hills a lot easier (being 30 pounds lighter might have helped!!). Anyway my point is this recovery can be a long process so give your body time to heal.
Re the dependence on the Peg, at your recovery point you are doing GREAT only using it 20% of the time.
If you get a chance update your Signature Line like most of us so that we can know more about your Dx and Tx each time you post.
Congrats for completing Tx.
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: May 2009 Posts: 132 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2009 Posts: 132 | Hi, Tristeve -
Like David, I am a cyclist and was riding 100+ miles a week before my diagnosis and tx. As if the surgery wasn't enough, the radiation and chemo meant I've been off my bike since June. I've only JUST started riding my mountain bike on easy trails for about 45 minutes a go, a couple of times a week. The first inklings of energy are just starting to return, and I am about 10 weeks out of treatment...and there are days when I still just want to lie around and rest because of the fatigue, so I just let them happen as they will.
In short, this recovery takes a much longer time than probably any of us was ready to face when we got into this! So hang in there -- you WILL be back, but you need this time to heal and recover. It's hard.
Chrissy
Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 |
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | David,
Could you describe a BRUTAL WINTER in Gulfport for me?
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"
| | | | | 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 | Anytime it dips below 60. Burrrrrrr
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | That sounds just terrible David. How ever do you deal with that freezing weather? Do they even sell ice scrapers in FL? Do you even know what they are?!?! lol
Last edited by suzanne98; 11-21-2009 06:01 AM.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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