| Joined: Apr 2012 Posts: 13 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Apr 2012 Posts: 13 | 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
| | | | 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 | 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!!!! 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 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | 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
| | | | 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 | 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
| | | | Joined: Apr 2012 Posts: 13 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Apr 2012 Posts: 13 | 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
| | | | Joined: Apr 2012 Posts: 13 "OCF Canuck" Member | OP "OCF Canuck" Member Joined: Apr 2012 Posts: 13 | 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
| | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | 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
| | | | Joined: Mar 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | "OCF Kiwi Down Under" Patient Advocate (1000+ posts) Joined: Mar 2011 Posts: 1,024 | 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!
| | | | 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 | 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!
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 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | 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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