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Ambra Offline OP
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The radiation treatment, that is. Or as they call it tomotherapy, based on the machine that is being used. It is not too bad, the mask is uncomfortable but I can deal with it. The actual rads last for 477s.

I am still going to work, have been given pure writing assignments for the moment, as opposed to usual lab experiments. Also have 2 PT appointments every week, so keeping busy. Hoping that the side effects kick in as late as possible.


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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Good luck and do get plenty of calories and water each and every day for at least the next 2 years.


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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Ambra Offline OP
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So week one is over. So far everything is fine, maybe some minor throat scratching, but I am not sure if it is real or a product of my imagination. Also feeling tired, but I was feeling that even before it started, so not sure if it is a real side effect. I am starting gabapentin tonight.
I have also been seeing a cancer counselor. Results of some tests are that my stress and anxiety levels are through the roof and there is moderate depression as well. I guess that explains my inability to concentrate at work and feeling that my brain is foggy.
I was reading here about mouth rinsing with manuka honey, how does that exactly work, especially when already using salt/baking soda rinse? Are they used at different times? Is sugar from the honey a concern for the teeth, I always brush/rinse my teeth after any food, especially something that contains sugar?



36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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Posts: 269
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I used the both the baking soda/salt and the organic raw Manuka honey. Sometimes I used the Manuka right after the baking soda rinse, sometimes just whenever. It's good if you get sores I'm your mouth. Cheryld recommended it to me, she used it faithfully. it worked for me, or at least I thought it did. Maybe you can PM her. Some things work for some people, and don't for others. I wa a bit neurotic and tried almost everything suggested. AND DR APPROVED, I didn't make a move without asking my RO. I brushed my teeth alot during the day. I was so concerned about sugar, but everyone said eat sugar!! Sugar = calories! Maybe cheryld will see this and give her two cents.


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
Joined: Jun 2013
Posts: 18
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The measurable active ingredient in Manuka Honey is naturally occurring methylglyoxal, See this website here :
http://manukahealth.co.nz/news.cfm?article_id=136

I am neither a scientist nor medically qualified but I bought the highest UMF (22+) I could find and use that as a smear on my Fistula dressing. I have had positive and on going healing from this and although I cannot swallow have on occasions sucked the odd spoonful for added mouth relief. I give it a plus+. Some fistulas have healed completely and the general area is healed and healthy now.


Osteosarcoma radiotherapy right forequarter amputation 1961
Carcinoma of Right Larynx with subglottic extension
Total laryngectomy with right radical neck dissection 2000
Tracheostomy
Radiotherapy June-July 2001
Aggressive recurrence of the same May 2013
Neck Fistulas June 2013
P.E.G July 2013
Mi-key Oct 2013
Currently Chemo was : XELODA (Capecitabine) Now Carboplatin and now Gemcitabine !
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ngk Offline
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Oh thanks mikejwoodnz, I forgot 22+. I actually used 16+ bec I was being cheap and saved a few bucks. wink


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
Joined: Dec 2010
Posts: 5,260
Likes: 3
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Hi there - for me manuka was awesome. Because it's antibacterial it actually fights cavities. Strangely enough. It's the bacteria in plaque that causes cavities. (Go figure) I used it after each meal. I would eat, brush my teeth and then use the manuka (1 teaspoon put in mouth - let melt -swish for 1-3 minutes (- it stings- but your mouth feels amazing after.) I would use it when I knew it would be a while before something else went in there then in between I would rinse frequently with the baking soda mixture or flat club soda. It is antibacterial, anti fungal and antibiotic.. Pretty awesome bees I must say. Hugs


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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There is peroxide in all honey and may explain how mouth sores heal. The methylglyoxal is an antibacterial and gives Manuka honey an additional antibiotic property. UMF is one rating scale that stands for Unique Manuka Factor and is supposed to signify the strength of the methylglyoxal in the Manuka honey. The classification may also be based on a newer scale called MGO which is the amount of methylglyoxal in mg per kg of honey.


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
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Posts: 94
Ambra Offline OP
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Thank you very much everyone on the input on the Manuka honey. I am of to order some!


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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Hi Ambra:
I knew I'd find where you were currently posting sooner or later.

I'd never heard of this manuka honey stuff, but it looks like a winner, so will have to try some. My dentist gave me a bunch of old formula Biotene dry mouth rinse and gel, so will probably use them in concert for max effect.

Sorry to hear about all the stress and strain this battle with C and the treatments are putting on you. Like you, I don't have the energy levels I would like, but that's because the sore throat and mouth has never gotten any better.

I hope you have made a list of pleasant things to do to escape when the walls start closing in. Just going outside for a walk can often work wonders. Even though I don't really have the energy to play bridge well, and I'm sure the fatigue is causing me to play at less than par, I still look forward to every opportunity to play. I can always take a big nap after coming home.

Hang in there Ambra, if memory serves you're approaching 1/3 through with your rads already.

You know if you need me, I'm right here.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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There is fake manuka honey out there as with any product that becomes popular.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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I believe paul has a good point. Go to a well respected health store. I have whole foods where I live. They have everything and very well respected for their natural products.


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
Joined: Jun 2007
Posts: 10,507
Likes: 6
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From what I remember about Manuka honey, the higher the number, the better the healing properties of the honey. Ive never tried it but have heard great things from some OCF members who have used it.


Christine
SCC 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 smile
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Yes, christine is right. They have 22+ but i ended up with 16+, and it worked well for me. It's up to you. It's not cheap,but worth every penny. First time I used it was two weeks out and thought "wow this doesn't even taste like honey, it's pure wax!" I had my husband taste it and he said "nope, tastes like honey" it was my first realization, my taste buds had changed! No worries I'm three weeks out and they are coming back smile


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
Joined: Dec 2010
Posts: 5,260
Likes: 3
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You can buy it at whole foods. Or most health stores. You want pure, organic, with no additives. I used 16.

hugs.


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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Thanks guys, I will go to Whole Foods tonight. I can not taste sweets properly anyway from the surgery, so I am prepared for it to taste like wax :-D


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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Great...just remember what cheryl said and add the word raw too, that's where I got mine. Me prepared for the price tag! Ouch it was like $45.00. Worth it! xo


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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Holy crap I paid 26 for mine... You must have had golden manuka bees!!!! Mine was wedderspoon - sold by whole foods as well... Move to Toronto we won't rip you off!! smile


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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Just got mine from Whole Foods, also Wedderspoon, 16, and it was $33. They had another brand, 22 strength, but did not have the word "raw" so i decided against it, that retailed for $40.

Last edited by Ambra; 11-05-2013 08:35 PM.

36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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That's it Ambra! I have a feeling mine was the same price as yours and I was looking at the wrong tag when I was there yesterday. Who knows,but that's it. smile


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
Joined: Aug 2011
Posts: 269
ngk Offline
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Ok cheryld I'm moving to Toronto!


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
Joined: Dec 2003
Posts: 2,606
Likes: 2
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So Saturday my son was in a motorcycle accident and had some good scrapes among other things. I was looking at wound dressings and low and behold...they now have adhesive patches that are plastic like bandaids but they are smeared with Manuka honey! We put one on a scrape on the knee and a scrape lower was not treated with Manuka. It was amazing the difference even in 24 hrs. The Manuka spot was almost completely scanned over with no swelling or redness. The difference was quite remarkable.

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: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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Have you seen our crack head mayor on the news... I mean he's an international joke right now!!! Come to toronto, we are very accepting obviously!

They did a major study on manuka and wound healing at Sloan in NY. It was said to offer better healing than standard wound practices, also one of our members who was rather fair skinned, used to freeze dollops of it and stick them to any open sores on his neck while going through treatment - he said it worked like a charm - so awesome - I have to get some bandaids... so glad your son is okay... motorcyles can be sooooo dangerous.


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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Ambra - you have some great people helping you every step of the way with their experiences and suggestions PLUS Manuka Honey! Wow, wish Manuka Honey was in the picture 7 years ago when my son was in Tx. I just know you will be just fine, so hang in there and keep posting your updates!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Thank you very much for the support everyone! I can not describe how much it helps.

Uptown, could you PM me the name/brand of those honey adhesive patches? Looked them up on internet but couldn't find anything.


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



Joined: Jun 2013
Posts: 18
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[quote=ngk]Great...just remember what cheryl said and add the word raw too, that's where I got mine. Me prepared for the price tag! Ouch it was like $45.00. Worth it! xo [/quote]

I paid $100 for 250g of UMF 22+ and $35 for 500g of 25+ "active ingredients" both in New Zealand and organic.


Osteosarcoma radiotherapy right forequarter amputation 1961
Carcinoma of Right Larynx with subglottic extension
Total laryngectomy with right radical neck dissection 2000
Tracheostomy
Radiotherapy June-July 2001
Aggressive recurrence of the same May 2013
Neck Fistulas June 2013
P.E.G July 2013
Mi-key Oct 2013
Currently Chemo was : XELODA (Capecitabine) Now Carboplatin and now Gemcitabine !
Joined: Jun 2013
Posts: 18
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Here is a New Zealand site that appears (to me) reputable it has honey products including Gel and the Wound Dressings as well as various rated honey products. I am not familiar with the ratings used but naturally assume higher is better (as you do. The prices are about half of what I paid elsewhere (NZ Trademe - like Ebay).

Edit forgot the site LOL : http://manukahealth.co.nz/

Last edited by mikejwoodnz; 11-07-2013 08:50 PM.

Osteosarcoma radiotherapy right forequarter amputation 1961
Carcinoma of Right Larynx with subglottic extension
Total laryngectomy with right radical neck dissection 2000
Tracheostomy
Radiotherapy June-July 2001
Aggressive recurrence of the same May 2013
Neck Fistulas June 2013
P.E.G July 2013
Mi-key Oct 2013
Currently Chemo was : XELODA (Capecitabine) Now Carboplatin and now Gemcitabine !
Joined: Dec 2003
Posts: 2,606
Likes: 2
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[quote=Ambra]
Uptown, could you PM me the name/brand of those honey adhesive patches? Looked them up on internet but couldn't find anything. [/quote]

I went and bought one but they are private labeled for CVS. The only size I have found is 8" x 3" and they are sealed along the outside so you can't trim and use. Oddly, they are manufactured in the UK. I am trying to find other manufacturers and/or sizes. Details to follow.

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
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Tonight was the 10th treatment, 20 more to go.
It looks that the bad side effects are starting. My throat has started feeling dry and hurting a little. My skin is a bit red, like a mild sunburn. I am tiring more and more easily. I have to admit that I am quite disappointed, as I was hoping this things would kick in later.
Also, I could feel the gabapentin's side effects too. I get drowsy, tired and occasionally quite dizzy.

I have seen my RO on Thursday and, among other things, inquired about Manuka honey. He specifically told me not to use it. He is very academic (he is a professor at JH medical school, too) and mentioned some studies. If I understood correctly, there has been research that showed that the honey has beneficial properties. However, there are no studies that looked if this beneficial properties are for healthy cells only, or all the cells, including cancer ones. So he felt it was best not risk anything.


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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Hi Ambra, Radiation effects are usually felt between 10-14 days after starting, so it's pretty much on target. I take Gabapentin for neuropathy, but found lyrica was better, less drowsy too. The Gabapentin comes in different dosages, and the 100mg was more manageable than the 300mg. Anyway, I only like to take them at night due to it making me feel drowsy, and not 3x a day as the pain care manager wanted.

Keep up the good work, and good luck next week.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Good morning Ambra - hey you have several positive things to be looking at. First off you're 1/3 through your rads, I am only 1/7 (wish I was where you are). Second, with my sore throat, is it an infection or not an infection my mouth has hurt since long before rads every began. I feel like I have week 3 symptoms from the beginning and I know they will get worse. Third, you apparently have to do only 30 treatments, mine is 35. I think I'd trade places with you in a heartbeat.

I discussed manuka honey with my doctor also. He had never heard of it and he dismissed the idea also. He says go get a gallon jug of drinkable aloe vera liquid. It has had numerous medical trials and it's benefits are well documented as an anti inflammatory.

Sorry you're feeling rotten Ambra, but you do have some positives in your corner. It's not all bad.

take care, take another nap, that almost always makes things better.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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Ambra stay focused on the light at the end of the tunnel. You will get there. Keep the daily disciplines of hydration and nutrition ramped up as they will help you on the journey. I always thought the symptoms came earlier than expected especially when my taste buds went on day 5. Either way they come in all of us. Stay strong and be encouraged by what you read here. We have been there.


Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
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Thank you for all the support guys! Finished treatment #12. I am going to start using a skin cream called RadiaPlexRx that a friend recommended- her Mom used it when getting rads for breast cancer and she apparently had nos kin issues at all. My RO gave green light though he was skeptical about it making a difference.

PaulB, you are spot on about Gabapentin and dosage: I am indeed taking 300mg pills, 3x3 a day, for a daily total of 2700mg. It is the morning and afternoon ones that make me fill quite dizzy. Mt RO said I could decrease the noon dose to 2 or even 1 pill if absolutely necessary.


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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Hey guys, after tonight's treatment I will be half way through rads! But that was the easy half, and the bad one is still in front of me.

Unfortunately, the "fun' has started. I woke up on Wednesday with a fairly sore, painful and dry throat. It bothered me when I swallowed. Then yesterday, the dryness was gone, because the darn mucositis has kicked in as well! I saw my RO last night and after the scope examination, he confirmed both. Apparently there is an ulcer in my throat on the area they give highest dose (2.1 Gy), which was BOT. According to the RO, this is a good thing, as it means the rads are working. So he prescribed me more meds. I am already taking a huge dose of Gabapentin, and he added Oxycodone and Robinul. I am supposed to take Oxycodone 45 min before eating to make swallowing more comfortable, and Robinul is for mucositis. Both of these drugs, like the old one, can also make you dizzy and drowsy. Gabapentin was already doing a good job of that on me. I have a project deadline at work on Wednesday, and after that I plan to stop working, as I can not do much or anything at all with all the dizziness and tiredness.

Also, my hair started falling out at the nape of the neck and my skin is getting redder. Gums around the molar that is directly in the rad field (and some other random ones, which I can not explain)are swollen and painful when I brush my teeth. Is there something that can soothe the gums other than manuka honey which my RO did not allow me to take?

I am feeling pretty depressed about all these symptoms. I know that they are normal at this point, I am more worried about how much worse are they going to get.

I have also hit the max on my insurance's catastrophic protection, so from now on till the New Year's all my medical expenses are covered 100%. If there is anything you would recommend to have done, now would be a good time.

Thanks for reading!


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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Ask for a prescription for Magic Mouthwash. Use it as necessary to help with your sore mouth and before eating. Rinse your mouth with 16oz warm water, 2 tsp baking soda, and 2 tsp salt at least 4 times per day. If the salt burns your mouth, cut it back or omit it. Try to keep some salt in the mixture as it will help with healing.

Hang in there!!!


Christine
SCC 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 smile
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Sorry got your troubles Ambra. Rinsing with diluted Glutamine powder may help, which repairs mucosal tissue. It's also good for the digestive tract if swallowed, and for neuropathy. Rinsing with aloe Vera juice has healing properties, and can be swallowed with the same healing effects, but can be a little laxative, which may be good too. Coconut water has healing properties, is a dialectic, coconut oil too, but with oil more caution needs to be taken, so I heard, but check with that. Using soft or baby toothbrushes may be easier on the teeth, gums, and there are sponge type sticks too that can be used.

Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Hi Ambra,
The glutamine powder really helped me. I will pm you and if want give me your address and I will send you a box and will also send you some aloe vera gel to rinse your mouth out. xo


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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Hi Ambra,

Congrats on reaching the halfway mark! As suggested Magic Mouthwash is a wonder drug. At JH they call it Larry's Solution. I used it quite a bit the last part of rads and the first month post. It really helped with the mouth pain and gave me a window to eat (while I was still able).

Positive thoughts and prayers

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
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Hi Ambra:
Well you're halfway there, congrats. On Monday I will pass 25% completion. Based on your description I don't envy you, though I know I will be there soon enough on my own.

I take the aloe vera drinkable liquid, but not often enough. I'll get more diligent as time progresses. It doesn't taste bad (not good, but not bad either).

I wish there was something positive I could say that would make everything better, but I know there isn't. So, I'll just say I wish for you a good nights sleep and a weekend of minimal discomfort.

Keep fighting Ambra, you're on the downhill side of treatment now. Soon, it will start to get better.

Take care girl, I'm going to try to dance Sunday evening, may be my last dancing for awhile. All the waltzes will be for you.

Tony



Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Sep 2013
Posts: 94
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Thank you very much for the all the advice! I will ask my RO for the magic mouthwash, and have aloe vera and glutamine powder on their way to me. I already doing the salt/baking soda rinse. And I have coconut water too.

I have noticed in the last two evenings that the taste is getting messed up/going away too. Is it a bit early in the treatment for that to happen or just about the expected time?


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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I think my taste is so sensitive, I could tell a difference after one day. Most effects of radiation are felt after the first two weeks, in some immediately. Good luck next week.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Hey Ambra - mine changed the second week of treatment. Like Paul said, it's different for everyone. It's important to find something you can get down. Maybe Christine's milkshake recipe? Lots of calories, have you seen it? If not I think I might have it. I'll look and pm it to you.


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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Your sense of taste has held out about a week longer than most. Ive seen many OC patients begin to say their sense of taste started to go around week 2 or 3. Its gradual. One day something tastes fine and then the next you would swear it was salted burnt charcoal. Even water will have an off taste. I hated drinking water due it it tasting to me like salt or like it was burnt.

This might help you. Each shake has at least 2000 calories. You can make it thick or thin depending on how much milk you add. Its ok to drink 2 or even 3 per day. Many days when I was recovering I drank 2 or 3 until I counted up the calories and was shocked. Some days I would take in over 7000 calories and I was struggling to keep weight on. That is an example of how hard a patients body has to work to rebuild itself after undergoing rads and chemo treatments for OC.

You are about at the point where you may begin to have a few bad days here and there. Unless you are one of the lucky few who sail right thru. Your intake every single day is what will make things easier or harder. No matter how rough it gets, every single day take in a minimum of 2500 calories and 48 oz of water. If doing chemo push even higher amounts of water right around chemo days.

(All measurements are estimates)

Giant High Calorie Choc-Peanut Butter Milkshake

3 or 4 cups chocolate ice cream (regular/full fat type)
2 tablespoons peanut butter (smooth type)
2 tablespoons chocolate syrup
1 or 2 cups whole milk (can substitute half and half to add even more calories)
1 scoop carnation instant breakfast
1 scoop high protein whey powder

Blend this extra long to make it very smooth and creamy so it goes down easier.

Another thing that should help is the List of Easy to Eat Foods.

Hang in there, we got your back smile


Christine
SCC 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 smile
Joined: Sep 2013
Posts: 94
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Thank you so much for all the advice! Christine, I will make sure to try that chocolate shake. I am getting plenty of liquids these days, but calories are a bit harder.

The thing about the taste is, it was already messed up from TORS (couldn't taste some/most sweets) and it recovered a little, but never quite right. So now it started getting worse, plus I can not taste salt anymore either. I can taste bitter/sour just fine, too bad those did not go away first. I really hope water will keep tasting normal.





36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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I can vouch for the shake and wish I had this early on. Keep trying foods with the understanding all is experimental at this point. The shake though should be a staple even though you may not be able to drink all of the time. Water is key and you should do 84 to 100 ounces each day. The side benefit is quicker recovery of swallowing functions. Keep moving forward and tap in to the group's knowledge.


Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
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Try to find scandishake as well. Also heard that strawberry will always have the highest calorie count.


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
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Its about that time... ;o( bye bye taste buds... they'll be back eventually... hugs.


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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I'm just about with you Ambra, taste is beginning to go, mouth is hurting a fair amount, throat is still basically okay.

So, now and the next few weeks is the hard part for both of us. The good thing is you should start coming out of it before I do.

Hang in there Ambra, I know it hurts, but we will get through this.

And eventually we will even dance again.

Tony

Last edited by n74tg; 11-19-2013 03:50 PM.

Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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Posts: 5,260
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You guys are both troopers. You will get through it. hugs.


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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Thank you everyone for the all the encouragement.

Christine, I tried your shake two days ago and it was great! (don't know how it would taste today). Can it be refrigerated for up to 24h if one makes too much? My taste is so off I can not tell if something tasted bad/spoiled or not.

I know that everyone is different, but in general, how much time after the radiation does the taste come back (not 100%, but most of it)?

More bad symptoms kicking in: serious burning/sensation on the skin, my mouth burned really bad from the prescription fluoride toothpaste, taste getting really bad really fast... Sigh.

Today was my last day at work for a while, probably for the rest of 2013. Don't have any energy, can not concentrate, it took me 4 weeks to write a conference abstract I would normally finish in one. At least I have submitted it on time.

I apologize for all the venting, feeling pretty down right now.


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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So glad you liked it. There is never too much of that shake. Drink it! You can use the calories right now. When you think you have had enough, take 2 more sips and keep telling yourself just 2 more and before you know it, it will be finished.


Christine
SCC 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 smile
Joined: Aug 2011
Posts: 269
ngk Offline
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Vent away....xo


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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YUP!!! feel free to vent. The taste thing is really sucky, and so is the pain and burning thing, but remember - every day is a day closer to the end. and it will get better. Taste for me took a long time. A few months at least for certain things. I am not sure if I have trained myself after all this time, but anything processed (pop - YETCH!!!! or anything with a lot of additives still tastes like chemical waste... it's awful.) I stick to natural foods - veggies, a little cheese (allergic to it so it keeps me regular - don't ask...) occasional fresh fruits. I pretty much make everything from scratch or I buy it organic with natural ingredients (things like dressings that I am not inclined to make for myself) I found that when my taste started to come back natural foods were the most palatable. My sweet has taken a LONG TIME - so has my salty. I can now tell if something is super sweet because to me it has a hint of sweetness - or alternately when it comes to fruit - is not bitter! Same with salt. But everyone is different.

At this point you still need to brush but I recommend (since the fluoride and minty pastes HURT - buy a children's toothpaste... they are often milder in terms of mint, and have the same amount of fluoride. I bought natural toothpastes that had a licorice taste - that was palatable and didn't burn. Try a few things in the interim. Best of luck.


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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So, I am 2/3 through the treatment! Just finished 20th session tonight (out of 30).

Wednesday was my last day at work. I have managed to finish and submit an abstract for a scientific conference in Italy next May, I really hope it gets accepted and I get to go. So it is home now for a while, hopefully not for too long.

My taste is still wonky, at this point I can not say if it is getting worse or not. My skin certainly is though, and my RO prescribed me Silvadene yesterday. He also gave me viscous Lidocaine for my gums when I asked for the Magic mouthwash. For some reason he is against it. He was also against me rinsing my mouth with aloe vera. He seems to be pretty much against any rinsing agent other then salt/baking soda. I have started using the (old formula) Biotene toothpaste as the prescription strength fluoride paste really burns. My mouth is getting dry too -still some saliva but not as much as usual.

For those who have experience with Silvadene, how often do you use it? Do you still use other creams you were given together with it? I was using something called Radiaplex gel. Also aloe vera gel.

On the depressing side, this will be my very first Thanksgiving out of 12 in USA alone. I normally spend it with friends, and am always the one to organize/invite people who have nowhere else to go, particularly international people like myself. I am obviously in no condition to organize anything myself now. I am very disappointed by the fact that nobody thought to invite me or even ask what I will be doing this year, especially under current circumstances. Sigh...

Last edited by Ambra; 11-22-2013 06:54 PM.

36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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Posts: 805
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Hi Ambra,
Where are you?
We used the Silvadene. I applied it twice a day on Kevin's neck. He was a mess. We put it on in the morning and then again in the evening. We covered it with bandages so it didn't get all over his clothes. You don't want to apply it just before your rad tx though. I think we actually didn't start using it until we were done with tx.
I hope someone gets a clue and invites you for the Holiday. That really is lame!
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
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Just remember the thoughtlessness is THEIR problem, not yours. May not make the disappointment go away altogether but at least don't point any blame at yourself. Never know, a few might at least offer to bring over a plate or some gesture of kindness and respect. 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: Oct 2011
Posts: 225
"OCF Down Under"
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Ambra, people never cease to amaze me - the empathy and compassion of strangers; the thickheaded selfishness of relatives. I had a relative say to me they just wouldn't know what to say to my brother after he was diagnosed so just didn't ring - this was after me dropping some mighty big hints. My brother has expressed disappointment at the lack of contact from some people, but was profoundly comforted by the regular contact of others he might not have expected to do so, like a friend of mine who rang regularly, but who he'd never had a great deal to with him previously. There are a LOT of people thinking of you here. xx


Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
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Posts: 381
"OCF Canuck"
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Ambra,

Yep, people are strange. I was very upset for a while about the lack of contact from certain friends (and astonished at acquaintances who really stepped up), but after having some distance, I realized that my cancer diagnosis just completely freaked people out. I had one friend who recently confessed that she alternated between being sad for me and so happy that it wasn't her, that it left her paralyzed with guilt and completely unable to face me.

At the end of the day, I choose to focus on those who really were there, and while I have kept the "absentee" people in my life, there is always now a bit more distance with them.

We're thinking of you, even though we're not there!


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
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Hi Ambra:
Congrats on 2/3 done. I just passed 1/3 done, I am so envious of you, though not envious of your symptoms. You're just going to be through with it so much earlier; like I said, I'm jealous.

As for people, I guess my mother is the wierdest. All she wants to do is to say I worry about you, are you doing okay? Of course I'm not doing okay, but she wants me to say "yes, I'm doing fine" anyway. I can't discuss any details of what is going on with her as 1. she doesn't understand them and has no desire to understand them and 2. it just makes her want to end the phone call quickly. So, I have to try to keep everything "nice", which of course sounds like a phony, worthless conversation to me. I get way more support out of my friends, particularly the ones who have had cancer themselves. They know how to do it right, as I learned last night at dance club. I could have danced twice as much if I didn't have to spend half the evening listening to them. But they had to know sooner or later, so oh well, suck it up, get it over with.

Ambra, you are not alone in a global sense, even if you are alone in a local sense on Thanksgiving Day. I PM'd you my telephone number before, I will also PM you my cell number. I would love to talk to you on Thanksgiving evening. We can talk about dance if you like, or cancer, or even Italy. You make the decision.

take care Ambra, you're getting there one day at a time, even if those days seem to take forever.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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"OCF Canuck"
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It's weird - really some people just don't want you to burst their happy normal bubble with scary as shit news - cuz low and behold it's terrifying to think that you might have to face something similar some day.

My sister in law was the same - never asked me how I was - or anything she saw me once in the hospital and that was it - we get together regularly (with her parents and such) and she never once asked how I was - what my treatment plan was etc... That's just the type of person she is.

Right now my father in law is going through treatment (actually just finished radiation and chemo ) for esophageal cancer. - I got him into a top dr. In Toronto, and down at Pmh - I've spent a fair portion of my days off (I work a split week - always have mon, Friday , off and every second Thursday - I told her and my hubby (her brother) I would do what I could up front. Took him to various tests and did the long chemo / rads days with him as they were always on a Monday, I pretty much did two days a week and let them sort out how they split the other three days - we always worked it around her work schedule and my husband has flexibility so every week I would organize it so we know who was taking him when and where and if there were any other appointments (mo, RO, bloodwork - etc) and two weeks ago we were at my house for my father inlaws birthday and she had the Gaul to say to me... You know you're being pretty heroic you know since you're not even part of the family?????!!!!!! HuH? never mind he fact that I have been married to my husband for 27 years and he is my children's grandfather... Are you kidding me... ?
Some people are just putzes - I told her its something I would do for a friend as well as family - and ideally family - does for one another.

But it does give you some insight into what type of a person she is.

So if I'm not family ( after being married to your brother for a quarter of a century ) then what? Who gives a shit what happens to me? So being family is the only qualifier for you to step in and offer a hand? (No wonder she has like - 1 friend) seriously - can you say self centered much?

Ergh... Sometimes friends are better to you than family... And you definitely find out who your friends are... Hugs.

Last edited by Cheryld; 11-23-2013 08:04 AM.

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: Sep 2013
Posts: 94
Ambra Offline OP
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Thank you so much for the kind words everyone, it was very nice to wake up this morning and read them. I am very grateful for OCF support.

KP5, I live in the DC area. And thank you for your advice.

To be completely fair, I did get invited by two out-of-town friends to go spend the holidays with them, but I really don't feel like traveling long distances in this condition, or like crashing their family reunions either. And also, a good number of my local friends (most in their 20's and 30's) will be flying elsewhere to spend the holidays with their families.

The interesting thing about my local friends is that, in the very beginning of this whole ordeal, they were amazing. Between the diagnosis and surgery, people called all the time. For two weeks after the surgery, when I was in lots of pain, they made a schedule to make sure somebody was with me all the time. About 10 of them rotated. I was moved to tears an thought that maybe it won't be that bad going through all of this if I had such a support system.
But then, once I recovered enough from the surgery to go back to work, things drastically changed. A couple of people still remained amazing support in every possible way, especially a friend who had her unemployed father come all the way from CT to drive me to my treatments - I will never be able to repay that for the rest of my life. But the rest, well, some texted once or twice in this two months, and some completely disappeared. I am especially disappointed with my so-called-best friend. She made grand claims how she was going to do this or that for me and ended up doing nothing. No visits or phone calls in these two months. Couple of texts, that is all.

I am also conflicted about my all feelings: I mean I should be (and am) grateful for all the help after the surgery but very hurt with the lack of contact now. It is very difficult to have those two opposing types of feelings for same people.

Urgh, looks I am turning this into a therapy session. Thanks for reading. And sending lots of hugs to everyone.


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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You turn this thing into a therapy session any time you like. If that's what you need, that's what you get, no judging from us. Whatever you need, whenever you need it.

As much as you like dancing I just wish you could go. I remember why you can't. If you were down here, you could dance incognito all you want, we have a great club, last night about 150 members present.

My PM offer stands.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Jan 2013
Posts: 1,291
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Ambra,

Your experience is very common, so don't take it personal or feel your friends let you down. Even best friends going AWOL happens quite often. Doesn't ease the disappointment much.

Given your cohort lives by the rules of invincibility (ie 20 somethings), it partially explains their behavior. They see you return to work and function so figure all is well and go about their bursting 20 something lives.

Couple observations about my experiences on this subject. Many people just don't know what to say, how to react, or what they can offer. Too many reasons to even attempt to unwind that one.

Those that did engage usually had dealt with cancer in their past, often family or friends and could relate. Those in health care were most comfortable conversing about it.

Nearby neighbors, seniors, were most empathetic, understanding, and helpful. I attribute this to life experiences as well as having time to help with driving now and then.

Given the epidemic of HPV in younger folks, I decided to out myself, created an online journal site, and blasted that to every email address I had. I felt if I could get just ONE kid vaccinated it was worth all the flack I would get. Doing that also put me in control over my communicating outward and always be the initiator of my status and condition. In my mind, this eliminated all doubt who needed to contact who and reach out.

There's lots of disappointment as you are aware but also very freeing with no wondering, self doubts, questioning why, etc.

Do note many do not feel as I do and really struggle with relationships being affected when one gets cancer. Many "best friends" are no longer, so do not feel alone.

Life goes on a daily I just tried to do as much positive from a terrible situation. Don

Last edited by donfoo; 11-23-2013 12:57 PM.

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
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What everyone else said is pretty much true, and I have plenty of stories myself. Count on no one except yourself. When the good times, money is gone, and sickness comes, most everyone disappears, and someone you may least expect, even a total stranger, may help more than a close relative or so called friend, but they are too few and far in between. I'm staying home for Thanksgiving with my mom, again, but at least I have that, but were not cooking anything, and I have two siblings, somewhat locally, that are helping themselves elsewhere to feast lol, so I guess were not worth the trip or effort to help.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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Im sorry to hear you feel like your friends have abandoned you. This is very common. Too often the ones who are the closest to the patient dont know how to handle the situation and begin to distance themselves. This can be very hurtful to the patient. Sometimes strangers will become a patients closest allies during treatment and recovery as former friends fade away. When you are recovered the missing friends will slowly crawl back into your life.

As far as Thanksgiving goes, do something for YOU. Think of what you like to do. Take yourself to the movies. Usually they arent too crowded on holidays. There is always shopping if you feel up to it. Many stores are open on Thanksgiving. Just be careful in crowds, your immune system isnt fully functioning so you can pick up colds easier right now. For now thru at least the next year, make a habit of frequently washing your hands and using hand sanitizer. Avoid sick people and crowds. At least its now cold so wearing gloves doesnt look so unusual.

My doc told me that I shouldnt even go to the grocery store. He explained if someone at the other end of the aisle could sneeze and make me sick. Not sure if he was joking or serious but I laughed at his warning.

You know we will always be here to support you no matter what day it is. If its not too personal, where are you originally from?


Christine
SCC 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 smile
Joined: Jul 2011
Posts: 945
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Ambra -
The holidays are just really hard for a number of reasons, and feeling alone for whatever reason is high among them. You mentioned that you had a couple of invitations that you could not accepts. Do these friends have Skype? Maybe you could arrange a session with them on the holiday. Not as good as being there, but it would let them know how deeply you valued the invitation, and give you a window into the light at the end of the tunnel. If you can get outside yourself for a bit, it would help.
I also like Christine' suggestion of doing something for yourself. As an academic, I am sure there is a book that is too expensive that you would like to have. I found Connie Willis' Blackout / All Clear books wonderful for the worst of my caregiver days. Maybe a Masterpiece Theater series of DVD's would be good. The old Caligula is wonderful, with lots of scandal and a TRULY dysfunctional set of family and compatriots. If you order today (using the OCF Amazon link) you will have them for turkey day.
Maria

Last edited by Maria; 11-24-2013 10:42 AM.

CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
Joined: Aug 2011
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Ambra,
I can't say much more than what everyone else already said. One thing for sure is when friends do text, make your needs known. If they don't respond, then you still have done your part in the relationship. I also agree people who never had an experience like this just don't know what to do. I'm sure half your friends are thinking they don't want to "bother" you, but are thinking about you a lot and don't realize you would love the contact.
I'm sorry you have to experience this, I know it hurts. Will be in touch. xo


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
Joined: Sep 2013
Posts: 94
Ambra Offline OP
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I was already very grateful to find these forums on my first days here, and after reading all the thoughtful responses this morning, I am more grateful than ever. You guys are truly amazing.

About my friends possibly not knowing what to do, that is not exactly true. We have an email list of the 10 or so closest local friends to which I occasionally send important updates. So, I literally spelled out what I need, in a non-demanding manner of course. When rad started a month ago I sent out an email in which i said, among other unrelated things, that they do not have to know what to say and do, all I need is somebody who will listen. Moreover, I specified that I would love and need occasional company, as it is very easy to fall into depression when in this situation. Also, I sent out a new email last week when I stopped working, and said that if they would like to visit, I am home at such and such time after treatment ends, (which happens to conveniently be after 7 pm in the evening when work is done). I think that this is all really clear.

I will not be able to spoil myself by getting something expensive, as I am very broke with all the medical expenses. And do not have that much energy to go into crowds, especially since I occasionally get pretty strong dizziness spells, probably from the meds. But I might go to my favorite book store and spend an afternoon there. I got a flue shot last month, and frequently use hand sanitizer/wash my hands, so hopefully I should be OK.

Christine, feel free to ask. I am originally from Serbia, which used to be Yugoslavia when I was born, before all the hell broke loose. Lots of bad stuff happened, many wars etc., so I have been through some very difficult times before in my life, though of completely different nature.

Maria, you are very sweet. I will have a Thanksgiving meal delivered by a meal delivery service, and I will Skype with my family back at home. There might be some phone-calls from close out-of-town friends too, so it shouldn't be too bad.

Last edited by Ambra; 11-25-2013 09:07 AM.

36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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Amazingly our best friends became non existent too. I was actually having a Bible study at our house with 2 wonderful women. We had been meeting for almost a year every other week. When Kevin began the process they just disappeared. No phone calls, emails, nothing. I think that hurt the most because during the year they had had some things happening that I always checked in on them about between our meetings. To this day we have not spoken. I think they are embarrassed and I think they should be so I just let it go. That's probably not the best thing to do I guess, but it's a process to get through. Most of our friends did the same thing, but we weren't that close to too many people as we had just moved here 3 years before and this is a very hard town to make friends in.
Ironically people we didn't know came out of the woodwork. Neighbors we barely knew brought meals. Families from the elementary school brought meals. People we didn't know showed up on our door step with food and sometimes money at just the right time when I was trying to figure out how I was going to pay on something. I loved how God provided, but looking back now we can clearly see He took care of us the whole time through the work of Angels here on earth.
I pray that some of your friends would get it together. Sometimes ya' just want to smack somebody!!
Have fun skyping your family. Wish you were closer...we would be there for you!!!
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
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Ambra - So glad to hear that you are taking care of things. There are Angels here on earth, sometimes when we least expect it. The others - well, some people are just not good in crisis situations. And you cannot make someone feel what they are not capable of. They cannot give what they do not have to give.They may also have other things going on in their lives which impact their behavior. So it's best to appreciate and enjoy those that do come into your life to fill a need or bring some joy. They may only be there for a short time before they move on so the time you have with them is precious. I hope Thanksgiving will bring you some very special and joyful moments.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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Ambra, you are part of our OCF family now. You were from the day you joined our forum. We all watch out for each other. Many members have become my life long friends. I am lucky to have met OCF members from around the country, even a wonderful one from Canada and her husband. When we get to meet, its like we have known each other for our whole lives, like we really are long lost relatives. Of course not everyone wants to get that close, some prefer to remain anonymous which is perfectly ok too. We still think of them as part of our extended OCF family anyway and respect their privacy. Who knows, one day when all this is finished you may be getting together with a group of new friends from OCF. Guess you know we really are here to support you and we do have your back.

Make the very most of every single day. For many OC patients planning for the future is something many stop doing. Just keep this in the back of your mind.... when everything is finished next spring and summer you will be doing so much better, maybe you could attend one of the OCF walks closest to you. Never know what the future holds.


Christine
SCC 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 smile
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Ambra I am so sorry you are not closer to where I live. Mind you we are Canadian so you'd be visiting in OCT! When we have our thanksgiving... Some people are insensitive and callous. It's so bizarre I have had a friend since grade three. The year I was diagnosed it was just before Christmas. I had called her two days before and told her I would like to take her out for dinner. Now she's a little set in her ways - she doesn't like to go out late, gets tired easily so figuring out a day and time was going to take some work. We agreed to do it just not when. I told her we would touch base. Then I got my Dx. Admittedly, it was my fault for not calling her back... However - I went into fix it up and get it sorted out and get through Christmas mode. I did wish her a merry Christmas. I think I ended up having to leave her a message. I did not tell her about my cancer until later (I didn't want to be a downer - and frankly that is part of the reason I hadn't pushed the dinner thing as well because I really want to give her my bad news over the festive season - Anyway, I ended up telling her after I had finished treatment - Mind you I kept people updated regularly via facebook so - likely she did know on some level. But I did realize something else while I was going through it all - I was the one who always used to pick up the phone and say - hey how are you? and coerce her into going out. My neighbor who I would classify as my BEST friend said - if I were her I would give you heck for not telling me. She just said sorry for what you've been through when we finally talked. I'm not sure if it's just her nature... or what but we're still friends but yet we generally go for months without talking at this point. SO it's more like distant friends.

I get that some people don't know what to do or say. But really some people are very wrapped up in who they are, their lives, and having a FUN time.
And if where you're going is a little off the beaten path and kinda scary... they don't want to go there.

hugs girl - hopefully it was a good day for you.

Last edited by Cheryld; 11-26-2013 09:04 AM.

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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Ambra,

It's also pretty common that people that people "fade out" when what they perceive as the crisis is over. My experience was a lot like yours. When the obvious "event" is over they think it's done. I had one friend who visited in the hospital and then at home, but after I was back to work, I think I have seen her twice (both at my instigation). I really don't thin k people realize the leftover consequences of this disease. When I explained the recurrence risks to someone, they were shocked, as they had assumed it was over.

Plus, there's all of the psychological effects of going through this, the fight with eating, swallowing, talking, which takes a toll. I'm happy that people say my speech is great, but they don't realize the additional effort it takes (not only in ongoing speech exercises I still do, but also just focusing on certain words which still have some difficulty). It's mentally exhausting.

With a bit of distance now, I realize I have done the same things, although I hope to a lesser extent, with people. For example, when a friend's mom passed away, I cooked for her family for a bit, and checked in, but it didn't occur to me to call on occasions because I thought she had family. Now I realize I should have at least called and made an offer. I'm trying to be better, and really that's all we can do.


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
Joined: Sep 2013
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I have not responded for a while because I was and still am at loss of adequate words to express my gratitude for your wisdom and kindness. You guys are absolutely incredible. Thank you so very much! And thank you for sharing your experiences, which seem to be more the norm than the exception.

I am looking forward to meeting OCF members in person when the possibility presents itself. And I will try to find out more about OCF walks in DC area.

I have decided, in the spirit of tomorrow's holiday here in US, to be grateful for all the support I did get (I already am, do not get me wrong) and forget the one I did not. Thank you to those couple of local people that did not disappear, thanks for the help of the other locals after the surgery, for all the rides, for all the support from non-local friends, including the virtual ones. I am trying to push away these current feelings of hurt and lower my expectations. Maybe I am being needy and self-centered. And I will survive being alone and sick on one or more holidays, there are worse things out there as we all know all too well.

To shift the the gears back to the original topic, I only have six treatments left, am 80% done!!! I get a four day break from rads to recover a little. I saw my RO today, and he was quite pleased with my condition. Said I was a textbook base and that he will put me in his next textbook, don't know if this is a good or a bad thing. My throat hurts some more, and the taste is even worse, but it is what it is. I hope it does not get much worse than this.

I wish you all a very happy Thanksgiving and hope you get to spend it with you loved ones.



36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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25 done, 5 treatments left! I am almost there.

I have a question here about Silvadene cream, more specifically it's removal. My neck burns have gotten pretty bad, I have to use Silvadene all the time. However, it tends to dry on the skin into this cake-y, flaky texture that is quite difficult to remove, and I have to remove it all before rads, obviously. Today got really bad, a very gentle scrubbing of the residue in the shower lead to a 10 min crying session while doing it, I felt like a little kid. The burnt skin was even bleeding a little. And my super gentle Aveeno shower gel burned like hell.

I have spoken to a very nice nurse about it after getting my rads, and she said to soak a very soft cloth into warm water and keep that on the skin for a while before attempting to remove the residue. Any other tips and tricks out there? I really do not want the whole episode to repeat tomorrow. The nice nurse also gave me some special wound cleanser to use on the burn, hopefully that will help too.

Last edited by Ambra; 12-02-2013 08:30 PM.

36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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You may be putting too much on. It doesn't have to be super thick. We did what your nurse suggested. We wet down some gauze with warm water and let it sit a bit them took them off and repeated until it was gone.
Sounds like you are doing quite well..congratulations.


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
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I never used it. I only needed aquaphor. I heard of Domeboro soaks, but know nothing other than the name, soaking for skin irritation. Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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You can soak gauze in a solution of Domeboro and warm water. Lay it on the weeping burns and they get better literally over night.


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
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Hi Ambra:
Haven't checked in with you in awhile. Sorry the rad burns are as bad as they are and hoping the Silvadene removal works as hoped. I remember reading Christine saying to someone else you only need a little of the cream to work.

With 16 rads still to go I'm way jealous of your only needing 5 more.

Hang in there, every day is one day closer to joining you in Post Treatment forum.

Tony

P.S. Really enjoyed our Thanksgiving conversation.

Last edited by n74tg; 12-04-2013 03:50 AM.

Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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"OCF Down Under"
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Cheryl, no offence, but your sister-in-law sounds hideous.


Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
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Silver sulfadine cream should only be used with a very thin amount. Sounds like you are using more than necessary.

I always liked beta-val cream better. Ask your doc for a prescription with refills or ask the nurse if they have any samples. Many times they will have Aquaphor lying around to hand out. Aquaphor is over the counter but a little expensive.

How to use the cream successfully..... Dab it on, never rub it into your skin then allow it to soak the rest of the way in. Depending on what time you do your rads should dictate when you put your cream on. For example if your rads apt is at 10am, I would suggest you shower then go to rads. After you finish, dab some cream on in the car prior to going home. If your rads are later in the day (say 2pm), lightly dab some cream on after the shower using only what will soak in prior to your appointment (maybe half your regular amount). After treatment, dab it on in the car before going home. Prior to going to bed put more cream on and allow it to soak in overnight.

Another tip, I would dab the cream on and place a small gauze pad over it so the cream didnt wipe off all over the bedsheets. The rad techs used the gauze pads also when my skin exentually broke open. They would place the gauze over the weeping sores so the mask didnt touch the wounds. My neck was a real mess that I was certain would scar and look horrible after rads. Somehow my neck healed and there were no visible scars at all.

Good luck Ambra!!! I have faith that you will get thru all of these things and put it behind you soon.


Christine
SCC 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 smile
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Hi, Ambra
Congrat's on making it through Thanksgiving and almost to the end of therapy!

I bought a stack of soft, white washcloths and used those for cleansing as gauze is actually a bit rough. The other thing I did was to cut off the neck band of some of my husband's t-shirts so that they did not rub on his neck.

Crying is ok - really it is. Just remember to keep your eyes open if you are crying when you drive!

Thinking of you and hoping for the best!

Maria


CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
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Samki... she is... not offended... she's not my sister (if she was I would have given her a good smack upside the head ages ago... wink )


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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Ambra,
Hoping the soaked gauze and less silvadene works for you. FIVE DAYS LEFT! That's exactly what I thought this morning when I was praying for you! You have done an incredible job being so very courageous. I admire you.
xo


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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Thank you everyone for such supporting and helpful comments. It certainly feels like second family here.

Hmm, from couple of your comments, it certainly sounds like I am using too much Silvadene. I may have misunderstood a nurse who told me to use enough to completely cover the skin without any skin showing through. I am seeing my RO tomorrow, so I will double check on that. I will also ask about Domeboro. At this point, the two or so hours I have to spend cream free from its removal till the end of rads are really, really bad pain wise.

Christine thank you for all the tips, especially the final one. I am afraid I already messed up my sheets with the cream, but I started applying the gauze pad as soon as I read your advice.

Maria, I did something similar, and bought a couple of very cheap scoop neck t-shirts. I do not mind if I get cream on them at all.
No worries about crying and driving,I do not drive to begin with. Even if I did, I wouldn't be allowed to with the meds I am on.

I also think I have discovered a brand new side effect of the rads, called "dropping stuff and spilling various solutions everywhere" smile Joke aside, I am constantly spilling and dropping things, including food and medications, at least once a day. My brand new laptop and a liquid oxy have had a couple of close encounters, which freaked me out. Luckily my laptop survived. I hope this is due to the meds and not to some strange thing happening in my brain.

And, finally, only three treatments left!


Last edited by Ambra; 12-04-2013 07:37 PM.

36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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Posts: 269
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Three!!! Ahhh much better than 5!


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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Keep going - keep eating.. Hugs!


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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Way to go Ambra, only 3 zaps left. I am truly jealous with 14 still to go.

I found today I could actually eat a can of chicken and stars soup from the grocery; it didn't taste bad at all. Of course the whole can only has 170 or so calories, so it isn't much. But, to be able to enjoy something besides Ensure is a welcome change.

Keep fighting Ambra, you're so close now.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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Posts: 94
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I am counting days, only one treatment left on Monday! If it weren't for Thanksgiving break, I would have already been done.

I have seen my RO briefly on Thursday, and will see him again on Monday. While we will discuss this more on Monday, it appears that they do not want to give me any followup PET scans! At all! I have expressed my strong dislike of this and he said well, "maybe" before he had to leave; but it seems that I am up for a huge battle on Monday. I have read on Ngk's thread PaulB's response that there are no clear guidelines on the frequency of both ENT follow-ups and PET scans. Still, it seems to me that most people get one at 3 months and one around 9/12 months as well. Not sure about later in the first 5 years.

What would be good reasons not to give one a followup PET scan? I know it is not the radioactivity dose, those are low and one person can have quite a few PET scans. I have probably acquired much higher dose from daily CT scans before the rads anyway (that is how Tomo machines work). I simply can not come up with a good reason. How can one be declared NED with scans, based on what?

I do tend to worry a lot and while we all always worry about the cancer coming back, I am pretty certain this fear will be huge for me without PET scans. Especially since I was not given chemo, and I am already worrying about microscopic cancer cells that may have gotten out of neck into, say, lungs.

As you can see, I am very upset about this and prepared to really advocate my wishes on Monday. I sometimes get the feeling that they are treating me as a light case. In case the outcome of the conversation is not as I want, who else can prescribe me a PET scan? Can my family doctor do that? I know my ENT/surgeon can, but he and my RO work closely together so i am sure they share their opinions.


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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Hey there Ambra,

I know exactly what you mean! You and I have the same RO at JH. I did have a PET at 14 weeks post Tx and I was NED. I was told the same thing. No more PET scans or CAT scans. A yearly chest x-ray was all that will be required. I feel somewhat uneasy about it but then I put my life in their hands and I'm here so they must have a reasonable explanation. I spoke with Mysha about it but I, like you, want a more detailed reason why.

I've was scoped in September and last month and everything looked great. There's no reason to think the cancer has returned nor do I have any symptoms that make me suspect there's an issue.

Let us (and me) know what you find out and congrats! One more and done! The healing can begin smile

Positive thoughts and prayers

"T"


57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
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ENT's do have set follow-up exams based on NCCN guidelines, and thier Otololaryncology organization, but scanning is less specific, and in certain H&N cancers, like oropharyngeal, and it's for T3,T4 disease only, as per the NCCN guidelines, minus any suspicion.

Follow-up exam

1st year once every 1-3 months
2nd year once every 2-6 months
3-5 years once every 4-8 months
5 years or more once every 12 months


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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I had an unknown primary but it was suspected it was oropharyngeal based on being HPV+. I'm being seen every three months the first two years then every 6 months until 5 years then cut loose.... if all goes well that is.

I was treated at JH like Ambra and she's hearing the same thing I am about follow up scans. The consensus is so varied.

"T"

Last edited by fishmanpa; 12-07-2013 05:51 PM.

57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
Joined: Sep 2013
Posts: 94
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PaulB,

I appreciate you posting that guideline. It is less the frequency of ENT followups and more the PET scans I am worried about. It seems to me that most of the folks here on OCF got at least two scans after the TX ended, some more. The guidelines leave the doctors plenty of space to work within. It just seems that most doctors choose more scanning (and more ENt scopes as well) that my (and Fishmanpa's) RO. And yes, it does make me extremely uneasy.

Fishmanpa, I will post here what I find out from the RO. I certainly plan to press the matter. I really want to know what is a good reason NOT to have a PET scan, when most patients elsewhere are given at least two.


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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My experience at several CCC is a post treatment scan, all PET/CT, were done 3 months post treatment, and then 6 months after that, but I never made it past that before a recurrence. I read an article that said regular doctor follow-ups, with a palpable and visual exam, were just as effective as scanning, and scheduled scanning was unnecessary. I also read elsewhere, that a PET/CT is like 28% more effective in detecting cancer than a doctors exam is. I did find all my cancers in my lymph nodes myself, confirmed by PET/CT, FNAB, except my last one due to having a pec flap, which is one of the negative aspects of one, and makes recurrences difficult to detect, so I need scans now. I think I had about 14 scans or so.

Good luck with your doctor visit.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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[quote=PaulB]I did find all my cancers in my lymph nodes myself[/quote]

That was pretty much the reason I was given. I was told that between the visits, scopes, physical exams and my own body telling me something was not right, we/they would be able to determine if something sinister was brewing. If I had issues or they saw or felt something out of the ordinary, then scans would be ordered but until such a time occurs, no scans.

Ambra... ring that bell loud enough for me to hear all the way in VA on Monday ya hear?! Hang onto your mask too... we'll see if we can arrange a mask burning party smile

Positive thoughts

"T"

Last edited by fishmanpa; 12-07-2013 08:37 PM.

57
Cardiac bypass 11/07
Cardiac stents 10/2012
Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+
Palatine Tonsillectomy/Biopsies 12-21-12
Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13
Emergency Surgery/Bleeding 2/18/13
3/13/2013 30rads/6chemo
Finished Tx 4/24/13
NED Since
Joined: Oct 2013
Posts: 559
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Mask burning party ... heck no ... I'm using mine to scare the bejesus out of the trick or treaters at Halloween.

Jason will have NOTHING on me.

Of course my house will likely get egged or wrapped as a result. LOL


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Sep 2013
Posts: 94
Ambra Offline OP
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So it is finally over!!! I am so pleased. Of course, it couldn't finish without drama. The pain from the neck burn without the cream was so bad today that I have spent most of the 75 min ride to the hospital crying. And then cried some more during the final rad treatment, because the mask made it worse. I was/am quite embarrassed about it, I felt like a little kid. The crying was not emotional, it was a pure reaction to the physical pain that I just couldn't control. And I did take oxycodone, which didn't make much of a difference.

I took the stupid mask with me home, haven't decided what to do with it.

My RO has apparently changed his mind about the PET scan, at least the first one, he said I should have one in three months. He stated that the reason is that my rads were unilateral, they only irradiated the cancer side. Apparently there is a risk, he said under 5% chance that the cancer could come back in the lymph nodes on the opposite side. While I am quite glad I will be getting the scan, now I am worried about this possibility, which I frankly haven't previously considered.

I will worry about getting the more sans when the time comes. My RO admitted that his team/department tends to be on the side that gives as few of scans as possible. He didn't quite explain why, tough he mentioned something along the lines of what "T" wrote above.



36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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Posts: 559
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Congrats Ambra - treatment finally over, now you can get on with your life, think Italy next summer, enjoy the sun, the wine, the food, all those good looking young Italian men, dancing until dawn.

Okay, now quit fantasizing and come back to DC. It looks like you are doing exactly what Bart told all of us not to do. Doctor says there's a 5% chance of getting cancer on the other side and you start worrying almost immediately ... stop that.

There's a 95% chance that nothing will come from it. Whether it comes back or it doesn't you have no control over, so why worry about it. If it comes back then you and all your brothers and sisters in this family will face it and fight it together, just like with this first battle. You are plenty tough enough to get through it, same as you were this time.

Sure it's easy for me to say all this, but I was tested myself just yesterday. I had a follow-up chest CT Monday a week ago after they found two small areas of interest in lower lung on first CT at time of surgery. They had not given me the results a week later. One part of me said no problem, any number of reasons why it's taking longer than normal to get the results. Another part of me said they are waiting until they can tell me to come to Little Rock (and bring someone with you) to tell me the results. Of course, all these thoughts occur when you first go to bed. If I had let them, I'm sure I could have worried about them for hours and possibly get no sleep at all.

Fortuntely, when I go to bed, I'm usually beat, so I just say screw it, I'm tired, I'll worry about this tommorow (if at all). Tomorrow came, the sun rose in the sky, I'm still alive and the all's well telephone call came. Areas of interest have not changed size, come back for another CT in 6 months. I didn't even think to ask them why it took so long to get the results.

Ambra, stop worrying, you are going to be fine.

Don't make me get on a plane and come to DC.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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Congrats on getting through it my dear.... try not to worry. 5% is nothing in the long run... think positively and take time to heal... be patient. hugs


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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Ambra,
Glad to hear you are done with the daily dose. Just a few weeks and things will improve. Meanwhile, you MUST get the pain meds reviewed as you should not be in pain. In fact, your recovery can suffer because you are in pain, so get that looked at asap.

The daily mantra is NUTRITION - HYDRATION - PAIN MANAGEMENT.

I guarantee you focus on just these three things and you will get through this as smoothly as is humanely possible.

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
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Ambra, congrats on finishing your treatments!!!!!

Im so sorry you are hurting. Its okay to cry and I feel bad that you are embarrassed to cry in front of others. Being in pain and crying is a normal reaction to feeling pain. Put any shame aside and know you are not the first one to ever cry when you hurt. Im certain the radiation techs and nurses have seen many patients cry for far lessor things. To me, I think you are very brave for attempting to hold in your tears.

We all for some odd reason take our masks home. I still have mine and Im 6 years out. I do use it too. When I go speak at schools I will pull it out. The kids are shocked when they hear me tell them about the horrors of rads.

I know you probably feel lousy right now and will for the next few weeks but please dont lose your focus on your intake. Every single day for the next year you must continue to take in a minimum of 2500 calories and 48 oz of water. if you can push yourself to take more in thats even better and will help you with speeding your recovery. Adding high protein whey powder to drinks also helps but check it with your doc if its ok.

Best wishes with your recovery!!!


Christine
SCC 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 smile
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Ambra,

I'm glad to hear you are done with RT. I'm sure it seemed like 7 months instead of 7 weeks, but you are now done and now time to heal. I'm sure you know that it will likely get worse for the next week or two, before you start feeling better - but you will, so hang in there!

As others have pointed out, NUTRITION - HYDRATION - PAIN MANAGEMENT is important now. Yes, the pain is bad so don't feel embarrassed for crying - I did!

Also, forget about the statistics - 5% is low. Glad you are getting the scan in 3 months as it will give you peace of mind. Just stay vigilant in the future and contact your doctor if you notice anything unusual or of concern to you.

I have my mask also and will take it out from time to time. It reminds me of what I went through and that I am a strong person. Some people change it into an art piece.

Now, just rest and heal.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
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Ambra.

Congratulations on finishing treatment. You have some amazing endurance. All the best to you as the healing begins. Be patient with yourself.

Best,
Mary


Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
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Congratulations on completing radiation, Ambra!


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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So happy you have moved into the recovery phase. I echo cheryld "time to heal"
Thinking of you daily.


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
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One more for hearty congratulations and for giving yourself time to heal. This experience can feel like (or maybe it does) leave a trail of PTSD. Be gentle and understanding with yourself.


SCC Started in the right tonsil they think, T1N2bM1
HPV+
Lots of nodes involved including some near the carotid - didn't come out during neck dissection
Distant Met's - one in the mediastinum, some suspicious stuff in the lungs
Radiation 70 Gy in 35 fraction
Cisplatin - 3
Stereotactic rad to the mediastinum
Clean PET Apr 13
Clean PET Aug 13
Clean PET Dec 13
Clean CT with contrast Mar 14
Clean CT with contrast Sept 14
Clean CT with contrast Feb 15
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Did I say yeah? Woot! and do a happy dance for you? If not... consider it done... congrats... now heal.. and be patient. hugs


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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Posts: 94
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Dear friends,
I have wanted to thank you so much for all the kind of words and support and congratulations. It means the world to me.

It is probably the time for me to stop posting on this particular thread. I am feeling decent so far. The neck burn is healing.
I do have problems with mouth dryness which I will start a new thread about in the " immediately post-treatment" section of the forum.

And, unfortunately, I found a hard small lump under my chin last night that I am hoping with all of my heart is only a nasty under-skin zit. I have already started a new thread about that in the "Symptoms and Diagnosis" section. I am very scared right now, but keep repeating to myself that it has to be a zit, till I can find out for sure. Hopefully that is what it turns out to be, but this is a way-to-soon experience of post-treatment fear of every small issue. I admire you all for living with this and overcoming this every single day. You are one brave bunch.

Last edited by Ambra; 12-14-2013 11:30 AM.

36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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