| | 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 | That is not the usual treatment scenario which is why so many of us struggle with dehydration. Wish it was the norm instead of the exception. So many patients would suffer alot less.
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: Apr 2012 Posts: 60 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2012 Posts: 60 | I agree with everyone that after TX you are going to feel bad and progressively even worse. I had a trech to deal with to and that made it even harder to swallow anything. I also have a peg to this day. I have been in remission for a little over a year and still am dealing with the side effects that the chemo and radiation has caused. I wish to that I would have found this forum sooner. But now that I have I love to hear about everyone's life. So good luck and I will add you to my prayers list.
10/10 IV OSCC metastatic to lymph nodes. 10/10 Peg,Port,Trech. due to rad scarring cannot swallow. 9/12 Pet clean. SCC back again 11/12. Tumor attached to jugular, Rad DX left side of neck 11/19/12. No Chemo or Rads. MRI on 1/11/13 for chronic pain w/pet scan 2/15/13.
| | | | | 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 | I have posted for years that all chemo/rad patients should get a port and at least weekly IV's. Main problem is we are being treated by people with NO EXPERIENCE.
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | That is why I am so terrified about recurrence. Our mo is no longer in the area so now we get lumped in with the rest of the world. He was an amazing man and is doing some great research. We will hear from/ about him one day I'm sure. His name is Dr Sydney Welt.
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | David - agreed. I went in two or three times for fluids when I felt I was about to die and they always gave me a couple of days of real relief. Should have done it at least once a week through rads and for a good month after!
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
| | | | | Joined: Aug 2012 Posts: 71 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2012 Posts: 71 | Thanks for all the advise, I seem to have lost about 5 pounds so far. Still eating a little and drinking lots of water. Drinking the Jevity but my RAD OC said I will be using the peg soon and should use it.
Good news? He cut my TX down from 35 to 33.
large lymph node Left Neck around May 22 2012
ENT June 6, did needle Biopsy - Negative
ENT CT scan July 9 - Negative
Remove lymph node July 26, DX - SSC - T1N2aM0
PET Aug 7, BOT
Aug 14, endoscopy, 1cm - clear margin HPV+
TX 33 IMRT - 6 Chemo - Taxol/Carboplatin
TX chemo 09/04/12 RAD 09/05/12
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | My MO had me in for 24 hrs during chemo and ran an IV the entire time. Chemo is hard on the kidneys. This was their protocol.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Aug 2012 Posts: 71 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2012 Posts: 71 | 1 more chemo and 5 rads to go. feeling bad. mouth dry, nose stopped up (and from bleeding). My nose bleeds then drys then I blow and can breathe, then stops up.. MO gave me steriods to help keep the nose from stopping up and I am taking sudafed at night so I can breathe through my nose and not my mouth. When I breathe through my mouth, I wake up, as it is dry and painful.
On thephenal patches, they help the throat but not much else (back head)...
I can barley choke down the jevity but still swallowing it and water, with the help of magic mouthwash.
I just get up, shower, eat (drink), take nap, lay around, drive to RAD, come home, read (some) lay around, go to bed.
But I will be through this Friday!
large lymph node Left Neck around May 22 2012
ENT June 6, did needle Biopsy - Negative
ENT CT scan July 9 - Negative
Remove lymph node July 26, DX - SSC - T1N2aM0
PET Aug 7, BOT
Aug 14, endoscopy, 1cm - clear margin HPV+
TX 33 IMRT - 6 Chemo - Taxol/Carboplatin
TX chemo 09/04/12 RAD 09/05/12
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | Hang in there. You're doing a great job. This is where it gets hard and you are still posting and drinking so you should be proud!!
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | 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 | Mickey, you have done very well with everything. I know it doesnt seem like it but you really are doing ok. I wasnt able to drive after my first couple weeks. I didnt think it was safe driving 45 minutes each way on a highway while being so sick. Please be very careful since you arent 100% and taking pain meds.
Keep pushing yourself with the nutrition and hydration. Thats what is helping you to do so well. Its ok to rest alot. When I was at your point, I spent about 20 - 22 hours a day in bed.
The countdown is on! Thirty done with only 5 more to go. By this time next month you will feel like a new man, so much better than you do now. Hang in there!!!
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 | | |
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