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CherylR Offline OP
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David - just passed along your restaurant info to some friends of mine who live in Lakeland. Told them they should come and check it out.

I can't say we've had an "epiphany" but by golly we've got some progress with the change from Zoloft to Lexapro! My H was almost himself this weekend - actually laughing and doing some work around the house. He has to take lots of breaks but got some things done. He also asked if I would call about rescheduling his surgery. I think the fact that he received his long term disability insurance papers in the mail this weekend and the requirement to file for SSDI with that have got his attention.


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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Only 2 months post Tx and it's perfectly normal to still be weak as a kitten. I would imagine his muscle mass took a big hit during Tx. Is he still pressing for a new scan before deciding/allowing a ND? With all these delays he could have had one and gotten the results back already.


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.
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CherylR Offline OP
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What he wants/wanted is a petscan. They won't schedule one until he's 12 weeks out of treatment - bare minimum. It's scheduled for 6/12. In the meantime, the Lexapro has helped a lot and he's wanting to go with the ND. Surgeon wants to see him before he schedules again so he has an appt with surgeon on 6/10. Guess we'll decide which way it's going from there. Will be a full week - my mom has surgery on 6/8, hopefully outpatient. No rest for the wicked and I must be very, very wicked - also, school ends and that means one more little kiddie at home.


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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I dont care what anyone says...Radiation HURTS LIKE HELL!! It burns, it makes you scared to go...and whats worse is, the nurses and radiologists see it 100 times a day so its almost impossible for them to give sympathy and understanding to ALl patients. That said, it was designed JUST FOR MY CANCER...so SOMEONE has spent a LONG time working out what was best. It worked...so far anyway...I am not going to jinx myself by sayin I am cured...but so far...its gone. The poison from this treatment however is another matter. Two years later despite my being free of the tumour and its friends (the cells)...I still suffer from radiation poisoning and my tongue is still painful and a bit swollen. The Professot who did the op tells me (now) that SOME people suffer for longer than others (the effects of radiation) GREAT. Now my only problem is getting enough painkillers to tackle the pain. Because it is nerve pain, neither me nor my Dr knows what to do. His main worry is that I will become an addict...I DONT CARE about being addicted to these drus as I will deal with one problem at a time. I just wish the FACTS were laid on the table FIRST UP! NOT 2 years later! Grrrr. On the days the Govt decides I cant get enough of the drig I need to enable me to talk and work, I sound drunk. GREAT! Maybe I will get drunk and sound sober? Ho hum...as you can see...its NOT a good day and I have another Drs app today and am preparing myself for him to ask me the same old questions "have you TRIED to reduce your meds?" To which my answer is YES but then I am in pain and sound drunk. He then gives me either one months supply...or 4 days supply depending on that one call to the AMA. Sooo I spend my entrie life organising my life around Dr appointments and pain specialists (who always tell me the same thing....they should just leave a recording!) Tell me what are you all taking to deal with the pain and movement of your tongues with these problems??? Bless you all Love Lyn xxxx


Tongue Cancer SCC Removal of 2/3 of right side tongue, neck disection-34 lymph nodes removed. flap for new tongue made from left wrist in 2007. Now (mid 2011) speech has been back to normal since early 2009, and Im back working as a singer. So far so good!
2016... Still cancer free! Yay.
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Oh and by the way...sorry about the spelling mistakes...I was frustrated and in a hurry to write my thoughts down...I am sure you all get my meaning smile Lyn


Tongue Cancer SCC Removal of 2/3 of right side tongue, neck disection-34 lymph nodes removed. flap for new tongue made from left wrist in 2007. Now (mid 2011) speech has been back to normal since early 2009, and Im back working as a singer. So far so good!
2016... Still cancer free! Yay.
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CherylR Offline OP
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Lyn - I can't answer your questions regarding pain meds given what you've been thru. My husband has only done radiation and chemo and did not have to have any removal of tongue tissue. His pain has been minimal and Lortab has taken care of that so far. However, the anxiety and depression has been our demon. Ativan has helped with anxiety and he's being changed to Lexapro for depression. This disease works on the body as well as the mind. Like you, this talk of being an addict to anything can take a hike - one thing at a time here and getting through it is #1. I'm sure others will chime in soon with advice on pain. Good luck and believe me, I feel your frustration!


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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Hi Cheryl,

Could H have a twin? You bet! Tom went through this but I seem to have convinced him to take his BP meds throughout but... 2 months post-surgery (dissection) he has stopped taking his meds...albeit because he just went back to work and they make him tired. His cheeks are again, flushed and last nite I told him he has to take them if he wants to survive. One more thing you might try...I ratted on him. Told his oncologist and she said no meds, no treatment..she even called his cardiologist. He was embarassed but it worked. He has even told me that he will not go through any more treatment at this point. Have him spend a little more quality time with his kids. We had a small miracle happen when my daughter gave birth to our first grandson and Tom responded with joy. He wants to be there to see all and he adores his grandson (and he was not the most responsive father when the kids were small). One thing my hubby has going for him is that he has a tremendous amount of faith. He feels that he brought this upon himself and he feels that he just received a heavy tap on his shoulder.
Now I know that you are overwhelmed (and you sound like you have your hands quite full, just remember that it could have been ALOT worse. Believe me, I fully understand your plight...Tom was out of work for 9 months and I could not work due to my own issues.
I hope that I may have helped you in some way. Please try to encourage him to take his meds...the neck dissection is neccessary for him to fully recover. He will eventually regain his strength and will regain some taste...it is up to you to try every single thing that you can to get him to eat healthy and get in as many calories as he can. Tom refused Ensure until now, realizing that the feeding tube kept him sustained during and some time after treatment. He got his PEG tube out after one month post-dissection. That happened because he wanted it so badly and so did I.He felt more whole and it greatly changed his attitude towards getting back to life "as usual".
Good luck. Email me if you need any more help.


Donna

Caregiver to Hubby,Stage IVb, SCC to left tonsil, Mets to nodes, Tonsillectomy, Cisplatin,Taxotere,5FU x 3, IMRT 33 Rads + Carbo x 6, RND 03/09--Dx NHLymphoma 04/09, CT of chest, stom, pel--all clear, 05/09 Pet--all clear, 08/09 Pet--all clear
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Cheryl, does your husband take the liquid lexapro? I take liquid Lortab for pain. I have a few small issues with some open spots on my gums that can hurt like heck. Especially when talking all day at work. Like Lyn said, he could have pain for a long time. There is no reason for anyone to live a life in pain when there are medications to help.

Hoping all goes well with yoru mother next week. You sure have alot going on. Make time for yourself even just a few minutes per day to catch your breath.




Christine
SCC 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 smile
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Posts: 4,912
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Christine - did you say that you take Lexapro for pain? This is a selective seratonin reuptake inhibitor that is used to treat depression. Did you mean that the chronic pain creates emotional issues that the Lexapro helps you with? Just curious, and want to be sure that people don't mistake this for something that is a pain killer....


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Oooops!!!!

I am so sorry, got the name wrong. I dont take Lexapro. Its hydrocodone which is the generic for Lortab. Thanks for catching that Brian.



I tried to delete the other post but wasnt able. I dont want anyone to get confused.


Christine
SCC 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 smile
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