| Joined: Jan 2013 Posts: 57 "OCF Canuck" Supporting Member (50+ posts) | "OCF Canuck" Supporting Member (50+ posts) Joined: Jan 2013 Posts: 57 | Hi ang 70 Gy is amount of radiation given, this is called (grays) normally max is around 70 gy's some have had more like Paul, hope Larry is feeling better. Ken
46 yr old non smoker moderate drinker Lump on neck Dx branchial cyst by fna mar 2012 Op to remove dec2012 biopsy back hpv 16 scc Starting rads jan 31 no chemo docs say? Finished mar13 Pet scan june 30 NED :))) Back to work and enjoying life Checkup aug 12 all good
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Don, It's more involved, complicated than just that, and it's done only in a few select places, and each part of the trained team is integral for successfull outcome to do the 4 part process, 1. Radical resection, 2. reconstruction like a flap, 3. IORT, and 4. boost dose radiation by IMRT, Protons, and possibly chemo to follow. IORT is EBRT, external beam radiation, basically a newer form of brachtherapy, and like IMRT there are different types, and different radiation machines. There is IOERT, Intrabeam-IORT, Low -Dose IORT, and High Dose Rate-IORT that I know of. I did HD-IORT, where I receved one large dose of Radiation in one fraction, 10-20Gy, taking anywhere from 10-60 minutes using Photons, and is done with the maximum resection, reconstruction by the ENT. The RO has to select the dosage, which is already pre-planned, but final adjustments are made, and recalculated. The proper sized silcone radiation applicators is selected by the RO, placed, molded directly on the tumor bed, during neck exposure, sutured in place, packed, and organs clamped out of the radiation field, and or protected by molded lead. Each part of the team is responsible for certain aspects, for example, the physicist, has to do safety checks 24hrs before surgery so the after loader can deliver photon radiation to the HDR, and continioulu checks it during surgery. The RO, who is on the facility license, is responsible for the applicators, wire, monitoring the tumor bed, tumor dose, etc, along with the ENT, and the ENT is overall in charge of the surgery. The whole team leaves the OR to the sterile control room where the same life monitoring equipment is inside the lead shielded room for the anesthesiologist, ENT, Radiation Oncologist, Physacist, and use CCTV. The treatment plan is recalculated, and after verification with the Physacist, and RO, the RO delivers the radiation, and monitors the surgical bed, applicators with the ENT. After the radiation deliver, it is retracted, and Geiger counter used by the physicalist to enter the room, where the radiation applicators are removed from the tumor bef by the RO, physicist removes the portable HDR, cleans, secures it, and ENT completes the surgery. Then, about 6 weeks later, or confining the treatment package to under 100 days, a boost dose of EXBRT is done. I had IMRT for 5 weeks at 45Gy with Taxotere and Erbitux, and this year haf my carotid artery, and vegus nerve, tumor removed, and then did 5 weeks Proton Therapy at 50Gy with Carboplatin. The RO Fellow said I was probably one of the few in the country to have had HD-IORT and Proton Therapy as part of the treatment package.
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
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Paul,
When you sit for your licensing exams? You would probably pass with flying colors...lol
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | Lol. Only things I like I do well with. Thanks.
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
| | | | Joined: Jan 2013 Posts: 1,292 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,292 Likes: 1 | yep. what can you say, insane does not even begin to describe the complexity of procedures that are done in extreme cases. I do point that out not in a demeaning way, just to comfort the 99% that your journey is very rare and there must be some other study to see what sort of mutated DNA you have to endure so much treatment. You got fight like nobody else here, that's for sure! 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: May 2014 Posts: 56 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2014 Posts: 56 | We're going into week six staring Monday. I'm not sure my husband is going to make it to week seven he's burned very bad the raw neck is showing all around I'm really worried he will get staph or it will become very infected he's trying to stay home and not get out around so many germs .. He's using Aquaphor ,cool aloe for the burning and Neosporin the one we have has plus pain Relif .. His mouth is so sore he can't drink water with out the pain so yesterday I started putting formula trough the peg along with water . I'm not sure how long each feeding should take I've been doing them slow around 30 mins each can or in our case bottle I've stocked up on Ensure plus it has good protein with 350 cal: each bottle the two cal has more but is much thicker and harder to get trough the peg it gives some resistance as I'm putting it trough witch takes a little longer than the thinner Ensure My husband took his last chemo Thursday he has a shaking in his hands and arms and is very nervous ... He didn't have this before !! Treatment ! This time on a better note the chemo didn't make him sick I think it's because we stayed on top of the Anti nausea meds: I'm wondering how long after treatment will it be before he can start to eat again ? Also how long will it before the neck starts to show healing .. We talk to the dr tomorrow I still keep racking my brain on if they should have done surgery to remove the tumor!
Will they still have to do surgery after rads: or so the expect the rads and one and half dose of chemo to get rid of this completely ??
It's a lot to think about I don't bring it up to my husband I don't want to Add to the stress being he is so close to being finished with treatments !
I keep asking is the formula alone enough to keep the weight on or help gain back some of what he lost? He was weighed on Thursday and was at 223 he started at 257 I pray he don't loose no more as I'm staying on top of the peg feedings every two hours or until he gets 2500 to 3000 cal:
Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads.. 2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
| | | | 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 | Everyone recovers at their own pace. Food will taste terrible for weeks after rads ends. Try not to get too far ahead of yourself with worrying about recovery. Focus on today and getting enough calories and water in. That must be the priority, everything else comes second. The formula is nutritionally balanced enough to sustain the patient for however long they need it. Losing 34 pounds is alot! That means he is burning up way more calories than he is taking in. This is not a good sign, his intake must increase right away. Push for a little more like 3200-3500 calories. No, it is NOT too much even though it sounds like alot. Dont lose sight of water intake and hit at least 48 oz, hopefully more like 64 oz daily. For a bigger sized person he should take in extra fluids. Dont forget about the chemo lab being a resource to get extra hydration. You will need a prescription from his doc. The extra hydration will make him feel a little better. I always felt like a new person walking out after being hydrated. How about making some milkshakes to help to soothe his sore throat? I used to make a chocolate peanut butter shake that had tons of calories. (All measurements are estimates) Giant High Calorie Choc-Peanut Butter Milkshake3 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 (check with doc if this is ok) Blend this extra long to make it very smooth and creamy so it goes down easier. If the shake is too thick, add more milk to thin it down to what works best for you. Easy to Eat Food List Keep encouraging him to drink every single day, even if it hurts. He will have far bigger problems if his swallowing muscles arent used every day. They very quickly forget how to function normally. Trying to relearn how to swallow after not using those muscles for days or even weeks is not easy to do. I was one who didnt have the luxury of a caregiver to help me and I spent way too much time sleeping in bed instead of paying attention to intake and swallowing. This caused me to never again eat a proper meal after going thru rads. I know it hurts, push him to swallow a few sips of water at least 3 or 4 times a day. Only a few sips will keep those muscles working properly and help him to avoid problems later. I know this is not easy. Ive been there and tried to quit. My son and nurses refuse to entertain that plan. Now is when being a caregiver is only beginning to be the hardest. I hate to say this but the next few weeks things will get even harder. Even when rads is over it continues to work making the patient feel lousy. Hang in there and dont forget to take a few minutes for you once in a while. Best wishes!!!! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: 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 | PS... Keep patting on the cream onto his neck. Never put on prior to getting rads, but afterwards on the way home he can pat some on. Repeat several times per day. Even if his neck looks terrible with oozing and open sores it will heal after rads is finished. Usually there are no scars left no matter how terrible the skin looks. ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: May 2013 Posts: 188 Likes: 4 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2013 Posts: 188 Likes: 4 | Christine is correct on the milkshake. I can testify that one a day put me on my way to recovery and is still a critical part of my diet to this day. Whatever happened with my metabolism no one has explained but my 4000 + calories per day to get back to pre C weight in 9 months was not possible without Christine's recipe.
Keep the feeding routine going as he needs that nutrition. Water and the milkshake are necessary by mouth to keep the muscles working. The speech therapist should have given exercises and those are mists also.
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. | | | | Joined: May 2014 Posts: 56 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2014 Posts: 56 | Thanks guys what abought the formula feeding trough the peg how much time should I take to do each feeding ? I've been doing it around 20 to30 minutes each time I do it slow so he don't get sick he is still taking the anti nausea meds should I be doing this faster or is slower better will he start to gain some if his weight back ?
Larry ... Rt tonsil / SCC.. HPV16 positive RT oropharynx tonsil) lymph nodes were 13mm left level 2 node / 16mm right level 2 node /12mm right level one node... pet scan was good except tonsil & nodes,, just got peg placed still able to eat/swallow undergoing rads) and chemo. ) 70gy rads.. 2chemo.finished rads July 8/2014 CT Scan clear on 8/12 pet scan October-2014-Clear/ left ear tube placement 12-15-2014
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