| Joined: Nov 2011 Posts: 53 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2011 Posts: 53 | Oh Eric, so glad you jumped on this one. Was feeling bad though because we only had one, well maybe two "incidents" . The driving thing really is an incentive to heal quickly although I think Pat actually enjoyed it.......... just don't tell him I said that :-). O happy days, after 3 hours at Moffit the Oncologist has released us from his care. Feb 6th is the PET, maybe I can drive that day!!!!
Debbie, caregiver to Pat my loving husband of 32 years. T1 N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Pat from all that I'm reading you are doing a fantastic job so just keep your chin up and keep trying and lean on the fantastic caregivers on this site to help you through.
I look back now that I'm not in a drug induced stupor and marvel at how my wife held me up by my boot straps while having really no support herself. To this day she's never been on these forums (I keep trying!). I look back at the stupid sh!t I said and did, most of which I don't even remember, and think why in God's name did she even stay by me? I'm thankful for her everyday as I'm sure your husband will be for you when he's allowed to reflect back.
Really ladies, I'm in awe of you for how you do it and can only pray I'd have the fortitude. My hats off to you all.
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Jul 2010 Posts: 531 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2010 Posts: 531 | ya I wish that Ron could get off the pain meds too, some days he's fine some days he's an "a" hole... He broke down yesterday for no apparent reason at BW3's, I tried to make him laugh, had chicken wing sticking out of my mouth, burping ya real lady like but hell I tried, he stopped finally, I asked him what happened? He said sometimes he can't control it and I said ya drugs and beer will do that to you. He had a couple and of course being a depressant duh. I think he is worrying more now that his biopsy surgery is Friday. I feel he will forever be on the meds, that darn dead bone issue is giving him pain hopefully it will start to heal up.
CG to Ron Out of Pain 4/3/13 4/12-lung and under chin growth no treatment 1/13/12 lung biopsy 6/11 recur 6/30 resection #2 Clear margins Clear 12/10 Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out RAD 30 8/10 DX 4/2/10 "Oral Cavity" T3NOMO 12/28/07 Non Hodg Lymph remission 7/08 passed away 4.3.15, RIP Ron, you are greatly missed
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | SUEZ - I really feel for you both. All that stuff messes with brain chemistry, and not feeling good enough to be active makes it even harder to be active. Walking the dog helped us both - don't know if that (just a walk if no dog) is a possibility. Of course, we get dumped on weatherwise in the next couple of days.
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: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2011 Posts: 805 | I actually had the thought of maybe it's something he can control after several months of tx. He really didn't care during the chemo, it was back and forth to rad twice a day that it got bad. We spent a lot of time in the car, as I'm sure we all did. Kev's employer is actually having some Ensure flown in for him tomorrow. These people really rock!! And...Kev said it was only -10 today so it felt really warm!!!
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Let me join my brother Eric in gratitude for the amazing patience of wife/caregivers in dealing with our driving commentaries. Some of my all time classics [quote]Speed up- you can make that light! Cut in now, that car will brake! Get in the other lane, this one is too slow! Don't slow down, speed up or we will never be able to merge! That idiot has a brand new car, just cut over in front of him, our car is old so what's a scratch? Damn it, just drive on the shoulder, our exit's next and the traffic isn't moving! Turn left now, the oncoming traffic isn't that fast! Are we waiting for an invitation to merge? Just pull into the intersection, it's only a yellow light. [/quote] I hated not being able to drive myself but ironically my wife was better temperamentally suited to deal with the mind-bending traffic jams of Washington DC and Georgetown during evening rush hour coming back from radiation then I would have been. Caregivers ROCK Charm
Last edited by Charm2017; 01-12-2012 07:29 AM. Reason: typos
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Nov 2011 Posts: 53 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2011 Posts: 53 | All of this driving chatter has brought tears of laughter to my eyes and my heart. No matter what, I will treasure the days and miles we traveled together good and bad because of the following: Slow traffic gave us time together that busy schedules and life simply never gave us before, every red light meant we had a few more minutes before the table bolt down began, the drive home and relief after gave us a chance to lighten up and continue our count down calendar. Now that life is "normal" again and I am back to work, treatments are over, I really do miss our drive time. Good or bad it was OUR time without anyone poking, prodding, bolting down, zapping. Just blaring horns, red lights, selective finger usage and time to chat and support each other. Good and bad, there was never a single day that Pat did not and has not told me how much he appreciates what I have done and do for him. Now, Kathy, I am so glad that Kevin has a supportive team that has gone above and beyond for him, did the humidifier help? Question for all of you, for the first time tonight I took a flashlight and looked into Pats mouth, the Diflucan (thank you Kathy it was a fungus) has healed his throat but he was still left with the sore on his tongue so the doctor prescribed Kenalog , a dental gel. Soooooooooooo tonight I helped him put it on the sore since it is so far back. HOLY BATMAN!!! He has a hole in his tongue! Has anyone gone through that, is that the treatment that is most effective or is there another avenue that we should be looking into. Feeling cold hearted in thinking when he said his tongue was sore, I was thinking Cancer Sore type sore. Advice?
Debbie, caregiver to Pat my loving husband of 32 years. T1 N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Hi, Debbie my husband never let me look in his mouth (fearing tears and hysteria). I know his tongue was sore for a long time - especially the areas of back-scatter from his dental work. The viscous lidocaine was helpful for the pain but don't know if helped with healing or not.
One of the nicest times that my husband and had together was returning home from a rad session / RO appointment. It was snowing, he was driving, and we were stuck in traffic. We had a nice talk with his sister via cell, and then just enjoyed chatting on the long drive home. Just like you say, we were together, partners in the journey, just as we have been in our 36 years of marriage.
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: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | [quote] HOLY BATMAN!!! He has a hole in his tongue! Has anyone gone through that, is that the treatment that is most effective or is there another avenue that we should be looking into. [/quote]
Is is possible the hole is where the cancer used to be and you just have to wait for it to heal and just manage the pain and keep infection out? Did the doctor look and see the hole for him or herself?
Alex has a "shelf" at the back of his throat where his cancer was. It has healed over but the physical deformity (sorry don't know how else to describe it) will always be there ready to choke him when food gets stuck there.
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
| | | | Joined: Nov 2011 Posts: 53 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2011 Posts: 53 | I believe the hole is where the cancer used to be or close to it. I hate seeing him in so much pain when everything else has healed. The throat has healed and was a fungal infection, but now he is losing weight again because it's painful to eat again. Wondering if they can't just pop a stitch or two into it to close it up? The doctor (oncologist) looked at the hole and prescribed the paste, the radiologist looked at it and prescribed pain pills, I am thinking the original ENT plastic surgeon might have an answer? There has got to be a way to plug an open hole to keep food out that might cause recurring infection? Getting frustrated, but still thankful for the end of the worst and just dealing with the fallout.
Debbie, caregiver to Pat my loving husband of 32 years. T1 N2a M0 squamous cell carcinoma of the left base of tongue. Started on concurrent cisplatin and radiation, first cycle was 09/26/2011, 35 rad, 2 chemo. Last Rad 11-11-11 at 1!!!!
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