| Joined: Jul 2011 Posts: 131 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jul 2011 Posts: 131 | Man this is sooooooooooooooooooooo what I needed. Just ate my first can of chicken noodle soup in a week. Dry chicken chunks and all. So got me some carbs, some protein and some fluids! Praise God that he gives us sharp Doctors when we really need em!
Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | I'm so glad there was someone who helped! There needs to be a coordinator who is in charge of making sure patients don't get put off like that. I talked to my ex's ENT about it...we saw some of that type of behavior. I think sometimes a doctor's ego and/or workload get in the way of relinquishing authority for patient care but prevent him or her from accepting responsibility when a patient has a problem. It is tiring to get the run-around. I hope you are feeling better. Please take extra care when you are up and find you are unsteady on your feet. No need to have an accident while you are trying to recover from treatment. Sorry, I'm a mom...we worry...it's not just a job, it's a vocation. 
Last edited by Sandy177; 09-10-2011 08:43 PM.
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Apr 2011 Posts: 267 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2011 Posts: 267 | So glad you got taken care of. Feel better!
Tracy - 33 at diagnosis SCC right ventral tongue Dx 4/11. T1N2M0 1st resection 5/11. Bilateral neck dissection: 2 pos nodes 2nd resection w/graft 6/11. Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11. 3 month MRI and PET/CT all clear. 6, 9, 12 and 24 month post treatment MRIs all clear. | | | | Joined: Jul 2011 Posts: 131 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jul 2011 Posts: 131 | You guys are great. And thanks Sandy, I totally need a Moms worry instinct these days. There's something special and insightful about a Mothers preservation instinct for her kids.
I am feeling pretty decent now. The steroid is just what I needed. I just can't believe my Oncology pros didn't see it coming and set me up for the scripts I needed ahead of time. I mean they really dropped the ball and put my life on the line. Not much good coming from cutting edge cancer treatment only to succumb to side effects. Not cool at all.
Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | Happy to provide some well-deserved mothering! You have a surrogate mom any time you need one--no need to even let me know...moms can tell when they're needed (and know to ignore the fact that sometimes we aren't needed!) But, in case you are in need of some e-TLC, just let me know! Sandy ps. I gotta admit, I was incredibly relieved to hear about the chicken soup!  Now, get plenty of rest, hunny, and no late nights for you...you've got some serious recovering to do! 
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | 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 | I am so glad you listened and went to the ER. Thats what they are there for! After we finish rads, we all get a sense of just being 'dropped'. Its pretty common for docs to miss some meds that you need after finishing your treatments. My docs thought I wouldnt need anti nausea meds any more but I sure did.
Hope you can stay on track now that you are feeling a little better. Please dont wait til you feel so bad to go to the ER. Good luck with your continued recovery. 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: Jul 2011 Posts: 131 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jul 2011 Posts: 131 | yea Christine, it just really snuck up on me this week. A few days without enough fluids and BAM downward spiral.
Also, I am super pleased to report that I just ate an actual pulled pork bbq sammich and I could taste it. Had to take very small, very well chewed bites... but I did it! If I can keep the swelling under control and the fluids up, I think I might be turning the corner.
ok off to bed as ordered and sleeping in tomorrow. Thanks guys, you really have been some of the best support I have had through this. All of you. This place is full of saints and angels sent by God to comfort the weak and weary. I will always be grateful.
Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]
| | | | 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 | Great to hear you're doing better!!! I wrote a longer message on your other post (doctor relationship) so I just wanted to say congrats on getting back on track! 
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: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Hooray for the good ER doctor! Glad to hear your are on the mend!
Last edited by Maria; 09-11-2011 05:19 PM.
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: Jul 2011 Posts: 131 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jul 2011 Posts: 131 | much better day today. I was actually able to stretch my pain meds to every 7 hours instead of struggling to get to 4. Decadron is doing the trick. I think the dose could be just a touch higher. Not much. They got me on 8mg daily, I think 12 would be better. I only got ten of them with this script tho so I'm going to talk to my MO in the morning and let him know I think a little boost will do and I will drop down to 8mg when I feel ready. I should be able to measure it pretty good based on how I'm swallowing.
I did get another cat scan of the area to measure the swelling and there were no new masses. Whatever that means, whether the old one is still there or not.. should have asked. I think I will call and have them send that scan to my MO and RO for the record so they can look at it to let me know what that meant. It wasn't a contrast cat though so...eh idk. If the mass isn't gone, total laryngectomy is next, which should cure this but... Lord knows I don't want to lose my voice. I'm going to focus on healing instead of that though. There is time enough for bad news. I want 6-8 weeks of no worries for once.
Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]
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