| Joined: Jun 2014 Posts: 86 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2014 Posts: 86 | [quote=Anne-Marie]Just a very small note to add to what Don has explained so very well - re your question about Chemo and he nausea associated with it - my son did not have chemo - only radiation (after surgery) and he really had a difficult time with the nausea but he did get through it, so if you are considering the chemo decision based only on the possible appearance of nausea, it is possible to have nausea when only radiation is involved. However - not everyone has a difficult time with nausea and some can sail right through treatment with very little nausea. I know you have found the very best doctors associated with a very good hospital, and their combined years of experience and knowledge should be very encouraging to you and your brother. [/quote]
Thank you Anne-Marie! You are so right and thank you for putting that into perspective. We did find great doctors to treat him and that is very encouraging.
22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue CT scan clear LN 6/20/14 HPV-, non-smoker R tongue, right hemiglossectomy Surgery 6/24/14 (Not reoccurrence but went to NCCC instead R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14 PT1N2B.3 positive lymph nodes out of 13 Extranodal extension present 9-15-14 IMRT (35x) & Cisplatin (2x) begun 10-21-14 peg in. 10-31-14 1 round of carboplatin 11-4-14 IMRT rx comp 3-27-15 Recurrent tumor in lymph node, L neck diss. 10-29-15 brother passed away, 23 yrs old
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | I would be hitting this cancer very hard. This is an aggressive cancer. I see from your signature that there is extra nodal extension present. This is very good reason to do the chemo to try and mop up any stray cancer cells that have escaped. Your brother is young and presumably fit and well. He will cope ok. Please, hit this with everything he is offered. His life depends on it. Praying for a Fantastic outcome for your Brother. Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT. PET 6/11 clear. R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in. March 2017 - 5 years disease free. Woohoo!
| | | | Joined: Mar 2014 Posts: 286 "OCF Down Under" Gold Member (200+ posts) | "OCF Down Under" Gold Member (200+ posts) Joined: Mar 2014 Posts: 286 | AK I'm not sure you had your question about staying in hospital or dentist questions answered?
Cisplatin hits pretty hard. They give you hydration (just a bag of saline) in a drip for the two days after the Cisplatin to flush it through the kidneys. Staying in hospital isn't usually necessary, but there may be cases for elderly people or people who live a long distance away for it to be beneficial. In most cases I saw they only admitted people who had complications (diabetes, constipation etc).
Your brother is lucky not to need any teeth extracted. Its a tough period for the mouth in general, and seeing a dentist for a checkup and fluoride treatment is important. The last thing he wants is to have a toothache and need a filling when his mouth is full of ulcers etc. Best to get it sorted before treatment starts. Cheers, Dave (OzMojo) 19Feb2014 Diagnosed T2N2bM0 P16+ve SCC Tonsil. 31Mar2014 2 Cisplatin, 70gy over 7 weeks (completed 16May2014) 11August2014 PET/CT clear. 17July2019 5 years NED.
| | | | Joined: Jun 2014 Posts: 86 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2014 Posts: 86 | [quote=tamvonk]I would be hitting this cancer very hard. This is an aggressive cancer. I see from your signature that there is extra nodal extension present. This is very good reason to do the chemo to try and mop up any stray cancer cells that have escaped. Your brother is young and presumably fit and well. He will cope ok. Please, hit this with everything he is offered. His life depends on it. Praying for a Fantastic outcome for your Brother. Tammy[/quote]
Thank you Tammy. We have decided that he will be doing radiation and chemo. He is fit and well as he worked out 6 days a week before this all happened. He lost 12 pounds after his surgery. We are making him eat constantly before radiation starts. Thank you for the prayers. It means a lot to us.
22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue CT scan clear LN 6/20/14 HPV-, non-smoker R tongue, right hemiglossectomy Surgery 6/24/14 (Not reoccurrence but went to NCCC instead R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14 PT1N2B.3 positive lymph nodes out of 13 Extranodal extension present 9-15-14 IMRT (35x) & Cisplatin (2x) begun 10-21-14 peg in. 10-31-14 1 round of carboplatin 11-4-14 IMRT rx comp 3-27-15 Recurrent tumor in lymph node, L neck diss. 10-29-15 brother passed away, 23 yrs old
| | | | Joined: Jun 2014 Posts: 86 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2014 Posts: 86 | [quote=OzMojo]AK I'm not sure you had your question about staying in hospital or dentist questions answered?
Cisplatin hits pretty hard. They give you hydration (just a bag of saline) in a drip for the two days after the Cisplatin to flush it through the kidneys. Staying in hospital isn't usually necessary, but there may be cases for elderly people or people who live a long distance away for it to be beneficial. In most cases I saw they only admitted people who had complications (diabetes, constipation etc).
Your brother is lucky not to need any teeth extracted. Its a tough period for the mouth in general, and seeing a dentist for a checkup and fluoride treatment is important. The last thing he wants is to have a toothache and need a filling when his mouth is full of ulcers etc. Best to get it sorted before treatment starts. [/quote]
Hmmm- they are making him stay overnight on the days he does cisplatin And he doesn't have any complications. They also said that he would do that bag of saline 2 times the week he does chemo. He went to his dentist today and his dentist said he had 2 small cavities but he said he isn't concerned about them and that he can get them filled in 6 months
22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue CT scan clear LN 6/20/14 HPV-, non-smoker R tongue, right hemiglossectomy Surgery 6/24/14 (Not reoccurrence but went to NCCC instead R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14 PT1N2B.3 positive lymph nodes out of 13 Extranodal extension present 9-15-14 IMRT (35x) & Cisplatin (2x) begun 10-21-14 peg in. 10-31-14 1 round of carboplatin 11-4-14 IMRT rx comp 3-27-15 Recurrent tumor in lymph node, L neck diss. 10-29-15 brother passed away, 23 yrs old
| | | | 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 | Although its not the same treatment, I stayed in the hospital for the 5 days of TPF Induction chemo, Taxotere, Cisplatin, 5-FU, back in 2009, as was the protocol. Now they may do it as out patient with a fanny pack, like I believe Don had, but know of one patient last year, another site, who had it overnight, 5 days also. I guess It's probably dependent on the hospital. I can see both positive and negative aspects to this, mainly positive. I'm more concerned with hospital borne illnesses, mostly seen in ICU, severely compromised patients, lengthly stays, having been though them, but we go to the hospital anyway, everyday, for radiation treatment. it's just one of my learned fears that took me a while to get over, but I never forget them.
With Cisplatin, and most other chemo's, other medications may also be administered, besides saline.
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
| | | | Joined: Jul 2014 Posts: 42 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jul 2014 Posts: 42 | Happy to hear that the surgery went well and his tongue is now cancer free! Best wishes through his continued treatments and recovery. I am also starting on soft foods myself and am enjoying creamy (or blended up) soups, yogurt, mashed potatoes, scrambled eggs, and higher calorie protein shakes I've been making myself by adding a banana, oatmeal, peanut butter, and protein powder. Making these helps me keep my daily calories at 2000 and protein intake somewhere between 80 and 100 grams (this is close to my body weight and has helped me maintain my weight while on a restricted diet). Glutamine is a good supplement that helps with recovery - the nights I added it to my shakes I saw a major improvement in the swelling the next day.
Female, Age 38, healthy non-smoker, rarely drank, regularly workout May 2014 noticed irritation on tongue 6/18 saw doctor 6/25 saw ENT specialist got biopsy 6/30 Dx HPV P16+ ve SCC tongue cancer 7/9 CT scans, no visible spread 8/20 partial glossectomy with radial forearm flap, neck dissection 26 nodes sampled - results T2 N0 with mild dysplasia 4/2015 start to have ear pain 5/2015 recurrence 6/4/2015 surgery 29 nodes samples pN 2c 7/13/2015 7 wks of Chemo & Radiation start
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | HI there.. I responded to your questions about cisplatin in a different forum. I mentioned there that my hospital made me stay overnight as well. Cisplatin is very hard on the kidneys. My hospital kept me in to run hydration overnight after I received my chemo. It was a pain to be up hourly to pee but in the long run my kidneys are happier and I was well hydrated.
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
| | | | Joined: Jun 2014 Posts: 86 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Jun 2014 Posts: 86 | So my brother did one big bag cisplatin so far and 8 IMRT radiation treatments. He was just showing me his tongue and it seems like it's turning brown? And a little detached at bottom? Is this normal?
Also, he lost 7 pounds in a week so the doctor said he better start eating or the peg tube will be going in. He said that Everything tastes nasty to him. He had pizza the other day and it tasted like cinnamon sticks.
22 YO Brother Dx 6/17/14 w. SCC R Lateral tongue CT scan clear LN 6/20/14 HPV-, non-smoker R tongue, right hemiglossectomy Surgery 6/24/14 (Not reoccurrence but went to NCCC instead R neck dissection, tracheostomy, radial free flap, R tongue dissection surg 8/11/14 PT1N2B.3 positive lymph nodes out of 13 Extranodal extension present 9-15-14 IMRT (35x) & Cisplatin (2x) begun 10-21-14 peg in. 10-31-14 1 round of carboplatin 11-4-14 IMRT rx comp 3-27-15 Recurrent tumor in lymph node, L neck diss. 10-29-15 brother passed away, 23 yrs old
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Hi AK,
Radiation does a lot of damage to the oral cavity. I had lots of sores and other weird things things happening to my tongue, other areas inside my mouth and also the skin in the radiated area. Discuss all issues with his doctors. There are rinses (magic mouth wash) which helps with some of the issues, and creams that can be put on the skin (but never before the treatment, only after),
Taste is one of the first things to go unfortunately. For now it is all about getting the right nutrition so use the blender to make healthy and high calorie smoothies.
The next several weeks will seem like the longest weeks of his life because so much time is spend getting treatment, going to doctors and living with the aftereffects of treatment. Focus on the future - that is what kept me going.
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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