| Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | OP "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | One of the down sides to having layers is when you lose a bunch of hair at the back of your head you loose the longest hairs... So now I have an awesome new bob without the help of a hair stylist... Not cool! But I as of Friday I am 20 days into my rads treatment, so it will be the end of week 4! It would have been day one of week 5 but gremlins got into the unit overnight and toyed with the rads machine - a part has to be replaced today. So they cancelled and are either going to double fry me a some point or tack a day onto the end. I may sound like a sucker for punishment but I am hoping for the double fry. As it turns out i am also a chemo reject this week. Was supposed to go on monday but my WBC count was a little low - so they foisted me off to next week this sucks because I will not get chemo number three in. Apparently they can only give it during rads... But then if rads continues to work for 2 weeks after then I should be able to have it... Will quiz them next week.
Well past the point of mid week 4 - and so far so good. Still eating. Sores are healing thanks to the honey. Tried the peg feeds but I only get half a can in and then become nauseous. I'm managing lots of fluids but only about 1300-1400 cls a day. I may lose a little weight with this but not scary amounts. I'm swallowing fine though of course my tongue is swollen as is my throat but there's not a lot of pain so I'm okay.
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: Mar 2011 Posts: 130 Likes: 3 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2011 Posts: 130 Likes: 3 | This is all graet news Cheryl. I am VERY happy for you. I'm hopding up really well to. Going to see my RO after rads today. I might even let Mom come.
Lump in left side neck discovered Sept 2009 Misdiagnosed & FNA inconclusive Large lymph node removed Nov. 2010 SCC and HPV16 pos PET pointed tonsilectomy Feb. 2011 1ml tumor left side tonsil Rads scheduled March 14th 2011. 2X36 GY's (72) CarboTaxol once a week X 4 or 5 starting 4/5/11 No PEG
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | OP "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Awesome - sounds like your doing fantastic... Good luck today!
Last edited by Cheryld; 04-13-2011 11:09 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: Mar 2011 Posts: 130 Likes: 3 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Mar 2011 Posts: 130 Likes: 3 | I am doing fantastic. Perhaps too well in that I'm thinking I should be having way more side effects. Pluss...mom did come with me today and found out how much Roxicet my Mo's nurse practitioner gave me. They started out by giving me 500ml's. then I told the NP that I was taking like 20ml's at a time instead for the 5ml's perscribed so she said she was worried about all the Tylenol in there. So, she got me some more (without tylenol) but gave me 1,800ml's!!! because the co-pay was the same. Now I'm using a 25 microgram Fentynal patch and only useing the Roxicet for the "breakthrough" pain. I woke up this morning and didn't need any so that's good. I just really don't want to have to de-tox at the end of all this, but I guess I'll play it be ear. I'm very glad that you are doing so well and that the honey is helping. Don't worry about your hair. It will grow back and I'm sure you would be beautiful even if you were totally bald
Lump in left side neck discovered Sept 2009 Misdiagnosed & FNA inconclusive Large lymph node removed Nov. 2010 SCC and HPV16 pos PET pointed tonsilectomy Feb. 2011 1ml tumor left side tonsil Rads scheduled March 14th 2011. 2X36 GY's (72) CarboTaxol once a week X 4 or 5 starting 4/5/11 No PEG
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Cheryl, watch those calories! You do not want to lose any weight while going thru treatments. You should be trying for 2500 minimum daily with 48 oz water every day. If you can get more in thats even better. At one point I would pack in 7000 calories a day and not gain an ounce. Your body burns up calories like crazy while you are going thru treatment. I really hope you start to get more in or you will begin to feel lousy, and end up being hospitalized for malnutrition. Other than that it sounds like you are doing fantastick!!! Dont worry about the hair, Im sure you look beautiful! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jul 2009 Posts: 453 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Jul 2009 Posts: 453 | Ditto to what Christine said about the Calories. Have you got a pump for your peg. If so you may need to slow down how fast it is going into you. When steve got nausea's after his cisplatin we'd have to slow his pump down quite a bit so he could cope. He was having 6 cans a day most of the time but we did drop down to 4 when he had nausea and we ran the pump through the night while he slept. Most days he also ate icecream as it counted towards hydration and calories. Make sure you keep well hydrated Cheryl. It appeared to make a difference with how badly the nausea got steve. All the best with the rest of your treatment. You are almost at the end. Dont worry about the hair. Steve had 2 bald patches on the back of his head and lost his full beard but both have grown back.
Wife to Steve 43. DX 5 May 09. T4N2MO SCC tongue, floor of mouth, lymph nodes & jaw bone No surgery Teeth removed 06/07/2009 radiation 13/07/2009 x 7wks chemo 15/07/2009 x 3 Cisplatin last TX 28/08/2009 25/11/2009 PET-lymph node activity. 08/01/2010 CT Scan-ALL CLEAR 03/03/2010-Peg removed 01/2013 left side of Jaw removed and replaced with pectoral flap. 23/12/2020 scan show lesion in tongue 01/2021 SCC stage 3 base of tongue diagnosed 01/03/2021 chemotherapy started.
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | OP "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | I have lost a crazy amount of hair and not just where the rads are hitting me!!! Weird. Other than that I am doing fine. When I was running my feeds it would take 2 hours to go through. I cannot imagine it going in any slower. Like a drip every two seconds. I may be allergic to the feed itself. Going to talk to the dietician today. I am doing okay with real food. When I first started this whole ordeal I was on weight watchers - just trying to loose a few extra lbs. My last weigh in before diagnosis was 165. I lost at least 10 lbs in the hospital - post op, but pigged out right up til I couldn't taste food any more. Last week at weigh in I was 161. I originally thought I had lost 6 lbs in a week, according to the dietician's scale, but according to two other hospital scales I am 161. I know I am hitting the hardest part right. Now, but since I can eat by mouth that's what I am attempting. I will try ice cream - I had an Oreo ice cream sandwich 2 weeks ago and it tasted like dirt - maybe I'll just give plain old vanilla a try.
Thanks for the advice. Most of my food is in a semi liquid form, so hydration isnt a problem... Just the calories. Hugs to all!
Last edited by Cheryld; 04-14-2011 06:29 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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