| | 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 | Kathy,
Basically everything. Didn't like something in my ears; didn't like that people could still see and would comment that I had hearing aids despite them being the least visable as possible; didn't like having to carry another remote control in my pocket; didn't like hearing the wind noise if I turned my ear into the wind OR had my car windows down and to top it all off I didn't really notice all that great of difference in my hearing. All this after 2 days of trying those stupid things. I called my ENT and said they are coming back. He had already filed a claim against my ins despite requiring me to pay for them in full. Several weeks later I got a payment confirmation from my ins that they had approved AND paid my ENT. I had to wait 10 days to my money back from the ENT and had to spend my time calling my ins co to make sure they knew that I returned the darn things. Still have not gotten a confirm from either my ins co or my ENT that the ins check was returned so I will have to spend more of my time making sure that was handled properly. nothing to like here....
Now one day I may have no choice but to use hearing aids and hopefully I will be a tad more tolerant or maybe there will be a breakthrough technology wise. 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: Jun 2012 Posts: 17 Member | | OP Member
Joined: Jun 2012 Posts: 17 | My husband is set to begin IMRT and 3 Cisplatin treatments. His surgery last month removed the tonsil which showed negative margins though the tumor was within 2mm of one margin. ALso, when removing a series of lymph nodes there was one nodule of mattted nodes with extracapsular extension. The extension scares me.....hoping the chemo and radiation keep it from spreading. I have read a number of posts....still confused as to how this effects everyting. Thoughts out there???? Thanks for you help and guidence on this.....
Wife to 58 year otherwise very healthy husband(and the sweetest man in the world). T1N2b SCC. June 2012 TORS Tonsillectomy/mod neck dissection and 10 lymph nodes removed. Path showing 3 bundled nodes, slight ECE. IMRT 30x and Cisplatin 2x. PEG for 10 wks. CT 12/12,2/13,5/1 3,9/13-allclear
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | When does he start? One thought I had is when Kevin had his first dose of everything he got pretty bad diarrhea. He took meds for that, but then I feel he got a little bound up and it took a week or so to even everything out again. That was where some of his worst pain came in. I remember I actually had to take him by wheelchair downstairs to xray because the pain was so awful he couldn't walk. They did a scan of his belly and colon and it showed tons of inflammation throughout his intestines. That was rough. Just a thought for if that problem arises. We also had more than just the cistplatin too, so that might be why it was so bad.
I'm glad a decision has been made and he's ready to move on. Let the battle begin. Remember we are here for you both.
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
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | ECE is scary but I too had it. If your surgeon is good hopefully you're in mop up mode... Good 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
| | | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2011 Posts: 287 | Cisplatin is added here to only boost the effects of radiation (process is called concurrent chemo-radiation), however it does have number of side-effects.
As Christine mentioned, Cisplatin does have high rate of permanent hearing loss and unfortunately there is no way to prevent it like other side-effects. Discuss possibility of having Carboplatin instead along with Docetaxel with your husband's caregiver.
Since your husband will be having radiotherapy, my recommendation is to go for weekly cisplatin so that he can tolerate the treatment and complete it even though toxicity in either way of treatment would be similar.
Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
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