| Joined: Jun 2013 Posts: 49 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2013 Posts: 49 | Richard is over the "hump"! We have 2 more chemo treatments and a little over 2 weeks of radiation left.
He is bearing up.
He is unable to eat via mouth, so the PEG has been a blessing. He has lost about 10 pounds since the beginning of treatment, but is maintaining (so far) his weight. 6 boxes of Nutrin a day (3000 calories) and 64 oz of Smart Water. We have added a couple spoonfuls of optifiber to the mix (for constipation). He still gets his coffee, 2 cups, in the morning (via PEG) as he gets migraines without caffeine.
One thing that someone (an RN friend) suggested and is working for Richard is that water be given before the feeding (about 20 minutes), not after. We are mixing the water with X-strength Tylenol (crushed, with approval from his oncologist) to manage the pain. So far, this has been enough and works well for Richard.
We have to be careful, to keep on schedule in the evenings, as otherwise, he has severe heartburn, that causes him to vomit gastric acid.
We are tracking his treatments with a visual, sticky note chart, taped to the wall - kiddish, but it does feel good to pull a square off and toss with each treatment.
The lymph node tumor is visibly diminished and Richard feels like his radiation mask is not as snug as in the beginning, hopefully this is a good sign.
His spirits and attitude are so positive. He is still able to work, despite the discomfort and I hope this continues, as it gives him something other than the cancer, to think about.
Sorry for the long post. Richard and I do not talk a whole lot about this. Thank you for being my "outlet" and encouragement.
Barbara (CG) Richard (landscaper/surfer/in the midst of the OC battle)
65 yr old male in great health other than C. 5/1/13 lump discovered, 5/15 Biopsy, 5/29 PET/CAT, Diag: SCC HPV+ rt tonsil, 1 node, Stage III T1-2 N1, 6/10 PEG, 06/17 Chemo, 6/24 Radiation, 7/6 100% PEG, 8/14 Done with treatment, 11/6 follow-up PET, 11/8 NED, 11/13 PEG removed!
| | | | 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 | The mask feels less tight most likely due to the weight loss.
Unfortunately he is nearing the worst part of the Tx but do keep this positive attitude as each of us can react differently so let's hope he's one of the lucky few.
Calorie intake is super but make sure he gets plenty of water as well.
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 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Dec 2003 Posts: 2,606 Likes: 2 | Barbara, if the face moves in the mask ask them to refit a new one. Don't accept movement. Especially during the spinal block part. It should be standard protocol everywhere. Keep the cumulative Tylenol around 2500 mg or less a day as the liver is already battling chemo and toxicity of rads.
Sounds like things are going pretty good.
Ed
SCC Stage IV, BOT, T2N2bM0 Cisplatin/5FU x 3, 40 days radiation Diagnosis 07/21/03 tx completed 10/08/03 Post Radiation Lower Motor Neuron Syndrome 3/08. Cervical Spinal Stenosis 01/11 Cervical Myelitis 09/12 Thoracic Paraplegia 10/12 Dysautonomia 11/12 Hospice care 09/12-01/13. COPD 01/14 Intermittent CHF 6/15 Feeding tube NPO 03/16 VFI 12/2016 ORN 12/2017 Cardiac Event 06/2018 Bilateral VFI 01/2021 Thoracotomy Bilobectomy 01/2022 Bilateral VFI 05/2022 Total Laryngectomy 01/2023
| | | | 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 | Great job with the calories and fluid intake! This is usually the most challenging part of all of the treatment process. Most patients cant take in enough and end up struggling. Looks like he is right where he needs to be with his intake. Dont forget if needed he can ask the doc for a prescription for hydration in the chemo lab. By getting a couple bags of IV fluids, he will immediately feel better.
Unfortunately things get progressively more difficult as treatments continue. Keeping up the nutrition and hydration levels of what he is taking in currently may become tricky. He sounds like he is doing very well if he is able to manage his pain with only using tylenol. If that begins to not be enough make sure to speak up right away and get something stronger. Pain will make this so much more difficult to get thru the radiation treatments.
Keep up the good work. Never forget we are here for you too. Caregivers are like angels. They have so much depending on them and no matter how tough it gets, they still somehow manage to have a smile on their faces. We will be here to lean on if you need to. Try to take some time just for yourself once in a while. If you get burned out who will handle everything? So be kind to yourself whenever you can.
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: Jun 2013 Posts: 49 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2013 Posts: 49 | Richard is 10 days away from completing the radiation and only one more visit for chemo.
He is still working, taking in the recommended calories/water (by PEG). His throat is not as sore as it was 2 weeks ago.
However, the external skin around his neck down to the collarbone is badly burned from the radiation. He has trouble turning his head. Initially, he was applying aloe and that seemed to help some. The RO recommended Hydrocortisone 1% Plus, with Aloe. It has given him some relief.
The question that I have is with this severe burn, will there be a possibility of a long-term issues to the skin, after treatment is over? Is this normal?
They are now doing targeted radiation to the tumors for Richard.
Thanks for your experiences/wisdom on this.
Barbara (CG)
65 yr old male in great health other than C. 5/1/13 lump discovered, 5/15 Biopsy, 5/29 PET/CAT, Diag: SCC HPV+ rt tonsil, 1 node, Stage III T1-2 N1, 6/10 PEG, 06/17 Chemo, 6/24 Radiation, 7/6 100% PEG, 8/14 Done with treatment, 11/6 follow-up PET, 11/8 NED, 11/13 PEG removed!
| | | | Joined: May 2013 Posts: 134 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2013 Posts: 134 | This is gonna sound crazy but I put Willard's water in a spray bottle and sprayed it on my neck and my bald head (cuz it felt good). My skin healed very well including a post-tx lymph node removal.
I am in NO way affiliated with these guys. But what happened is what happened.
Last edited by ChristineB; 08-01-2013 04:29 PM. Reason: removed link
Dx March 2011 via FNA (49 yrs old) SCC BoT HPV+ exact strain unknown Stage IVa T3N2cM0 Cisplatin x 3, IMRT x 40 (7267 cGy) One node removed post-treatment (rad dmg) Clean PET 10/28/11 Swallow therapy | | | | Joined: Jun 2013 Posts: 49 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2013 Posts: 49 | Thank you, Chris. I took a look at the link and it seemed that the main ingredient was Aloe, which is what Richard's RO is recommending to put on his skin. Hopefully, this burn will heal up quickly. Aloha, Barbara (cg)
65 yr old male in great health other than C. 5/1/13 lump discovered, 5/15 Biopsy, 5/29 PET/CAT, Diag: SCC HPV+ rt tonsil, 1 node, Stage III T1-2 N1, 6/10 PEG, 06/17 Chemo, 6/24 Radiation, 7/6 100% PEG, 8/14 Done with treatment, 11/6 follow-up PET, 11/8 NED, 11/13 PEG removed!
| | | | 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 | There are many different creams to use for the radiation burns. Always pat the cream on the skin and let it soak in, never rub it in. Never apply cream prior to doing radiation treatments. Ask for a stronger prescription cream like Beta-Val or even use over the counter Aquaphor cream.
The skin on my neck was open weeping sores from radiation. It looked terrible but with using the cream several times per day and never immediately before rads, it did heel completely. I cant believe my neck was not full of scars but it did return to its former smoothness.
With care Im sure your husband's neck will be ok. If it has open, weeping sores, after patting on the cream, place a small piece of gauze on top, dont tape it on just let it sit there to help keep it clean.
Best wishes! 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: May 2012 Posts: 162 Likes: 1 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2012 Posts: 162 Likes: 1 | Barbara, for what it's worth, about half way through radiation, we switched from radioplex to regular Neosporin after every rad treatment...based on the advice of some of the other U of C patients. As soon as he was done with each rad, I'd put vislon burn pads (6) all around his cheeks, face & neck, wrapping in gauze to keep them in place, and he'd take a nap for around an hour. Then I'd slather him in Neosporin. I believe it helped a lot, Vince's skin never did break down, although during the last week, in the crease of his neck, it was paper thin. One point, no matter what you're putting on your husband's skin, be sure it's dry for each rad treatment. Best of luck...you're almost through it, Ana
wife/caregiver to Vince, dx 4/12 Stage IV BOT HPV+ SCC, poorly diff.; T4N2cMo; U of C; Clinical trial, Everolimus; 6 wks ind. chemo (Cetuximab, Cisplatin & Taxol), 50 x IMRT, 75 gy chemorad w/5FU, Hydrea & Taxol; 5 years out, thankfully still NED
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | There are two common medicines for the neck burn from radiation. One is Aquaphor which is applied first. If the burns get into open wounds then silver silvadene works wonders. best, don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | 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 used Aquaphor and it did a great job for me.
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 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 | In answer to the question I suppose there can be some long term damage related to the burns depending on his complexion and severity, but skin usually heals quickly and it takes a 2nd degree burn to do serious damage so it should heal okay and in a relatively short period of time - ever had a really bad sunburn? Kinda like that hugs. Oh and as many said there are many different kinds of creams - I used Glaxal base - totally awesome and non greasy - but I don't think you can buy it in the states. I am olive skinned and only tanned... So I had a tan from my nose down to my collar bone! no blistering or anything. Take care
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
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