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#162402 03-06-2013 07:26 AM
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joseel Offline OP
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Hi, I haven't posted in awhile. My husband Mike had chemo and rads last spring. He had a hard time but made it through. In January his neck started to swell again right where the nodes originally had swelled. CT scan showed what they call necrotic tissue and its growing. No biopsy, We are waiting for neck dissection surgery hopefully by the end of March.
Mike's pain from his neck is awful and is getting worse, if he moves his head or lays down too flat. It seems to come in waves. Has anyone else had this type of pain with nodes? We are waiting for the ENT oncologist to call in an Rx for meds and to advise. Any thoughts?
Thanks so much
Josee


CG to Mike, diagnosed SSC base of tongue March 6/12, T2N2, Stage 4, 35 rads, 3 cisplatin, hospitalized end of treatment TPN nutrition lost 50lbs. lymph nodes in neck necrotic tissue Jan /13, radical neck dissection March 20 positive SCC could not remove all
joseel #162404 03-06-2013 07:46 AM
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So sorry to hear of your husbands after treatment issues. Maybe steroids would help with the swelling. Once the swelling goes down his pain should ease up a little.

Best wishes!!!!


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
joseel #162407 03-06-2013 08:09 AM
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I had severe pain from an enlarged lymph node. Opioid meds helped, mainly a fetynal patch. I have an electronic bed to raise my head, but there are wedge pillows or head part can be raised, that may help. There are other meds too the dr may prescribe. I hope your husband feels better.


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






joseel #162412 03-06-2013 08:32 AM
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Sorry to hear about your husband's issue. Are they sure it's necrotic tissue? Without a biopsy there's no way to know for sure. I am not sure how that would show up on a scan... hopefully they deal with it quickly whatever it is. best of 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
joseel #162423 03-06-2013 10:44 AM
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joseel Offline OP
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Thank you all for the responses!
@Cherlyd They didn't do a biopsy, they didn't want to waste time because whatever is there needs to be removed. He had a small residual node about the size of a pea that they didn't want to remove after treatment was completed last year. They thought his body might resorb it. He got so weak and was hospitalized for 14 days after his rads and chemo were done. He needed TPN nutrition (IV feeding)
The doctor forgot to order a post treatment CT scan in October when we were there last and it took till Jan to get another ordered, by then his neck had started to swell.
I am trying to keep positive but its so hard to see him going through so much pain again. I've convinced him to use the M-eslon 15mg slow release we have at home and Statex liquid for breakthrough till we get new Rxs from the doctors. Its definitively helping more than tylenol.

Thanks again!
Josee


CG to Mike, diagnosed SSC base of tongue March 6/12, T2N2, Stage 4, 35 rads, 3 cisplatin, hospitalized end of treatment TPN nutrition lost 50lbs. lymph nodes in neck necrotic tissue Jan /13, radical neck dissection March 20 positive SCC could not remove all
joseel #162512 03-07-2013 07:40 PM
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joseel Offline OP
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Well I wanted to let you all know that he is doing better since the medication has been adjusted. He started 30mg M-eslon 12hr slow release and is starting gabapentin to help with nights.
Our chemo nurse took matters into her own hands and had Mike's chemo oncologist take care of the Rx's for us since ENT hadn't done anything 2 days after urgently asking.
What is the recuperation like for radical neck dissection? The ENt said they were going to take all of the sternocleidomastoid muscle and lymph nodes out on that side. Doc was saying a week, that isn't what I've been reading? Just wondering

take care
Josee


CG to Mike, diagnosed SSC base of tongue March 6/12, T2N2, Stage 4, 35 rads, 3 cisplatin, hospitalized end of treatment TPN nutrition lost 50lbs. lymph nodes in neck necrotic tissue Jan /13, radical neck dissection March 20 positive SCC could not remove all
joseel #162516 03-07-2013 08:23 PM
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I had a RND with the vein, nerve, and neck muscle removed. I was in the hospital overnight, in thier "step down" section like ICU, had a drain during stay, and ate a BigMac when I arrived home. I had pain meds like oxycodone, but pain was minimal, neck was just a little restricted in movement. The stitches were taken out closer to 20 days being after radiation, healing takes longer. I have an electric bed, so kept inan incline. The hospital will give instructions own discharge. I think effects are more long term, as far as lympodemia, tightness or leather neck. No heavy living over 10lbs for a few weeks. Good luck with everything.


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






joseel #162519 03-07-2013 10:42 PM
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Josee, glad that you have got his pain under control as that is very important. There is no need for anyone to be in pain.
As for the radical neck dissection, I agree with Paul. Recovery from the surgery is very quick and is usually pretty pain free due to nerves being cut. Discharge is usually the following day.
However the side effects take quite some time. He will need lots of physiotherapy to help with shoulder and neck movement which are the main areas of concern. Please don't delay on this. It is crucial for recovery.
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!
joseel #162543 03-08-2013 09:55 AM
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Hi a neck dissection actually isn't too bad they cut the nerves so the pain is minimal - you look like hell but it feels ok because you are numb. I gave up my pain meds day two - I wasn't in pain and they messed with my sleep. I had a tongue graft too so I was out - in 10 days for good behavior - I had two drains removed day 2 and after that it was my tongue that took the most time to heal.
He will have shoulder and arm issues after and will need physio to reclaim and improve movement - mine is about 98-99 % normal now.

@paul - that crap will kill you faster than cancer... (Big Mac!!! Ack!)

So glad your hubby is doing better! smile


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
Cheryld #162552 03-08-2013 10:40 AM
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I think the commercials have subliminal messages lol. I usually get a BigMac after surgery, idk why. One time I did get sick. ENT said, maybe it's not a good idea after having day surgery lol.


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






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