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Posts: 236
My mother completed her RAD Treatment since the beginning of June 2014. She is three months post treatment now. The swelling in her neck is really bad but it only swells at night or if she sits down for a while. She gets up all hours of the night just to walk around the house so the swelling goes down , It seems like its fluid building up . Does anyone know how long this happens. During her surgery in March 2014 the Doctor did remove 50 Lymph nodes from her neck. Could that be causing all this swelling and or fluid build up. And how long does this swelling or fluid build up last .

Last edited by sweetpe1; 09-08-2014 09:58 PM.

Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Joined: Dec 2003
Posts: 2,606
Likes: 2
Sweepe1, with a recurrence in the mandible/floor of mouth, that could easily cause the swelling as can the damage from surgery and radiation. Is the doctor aware of the swelling?


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Apr 2014
Posts: 236
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Joined: Apr 2014
Posts: 236
yes the Doctors are aware of the swelling . Seems like they don't really know what's causing it. I guess that's why a CT Scan and MRI was done. This has been happening from day one after surgery. We are really starting to think the Doctor just didn't get all the cancer out during the surgery. We are so disappointed in everything going on now.


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
I'm so sorry your family is going through this.


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
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"OCF Down Under, Kiwi"
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Posts: 644
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Sweetpe, have you had the results of the scans? Your signature and posts don't quite match up.

I can relate to the swelling and how it goes down when your mother is up and about. I've been told that I have some lymphodema which will eventually resolve once the lymph fluid finds new pathways and like your mum I finished treatment 3 - 4 months ago.

Does a cancer society nurse visit? Sometimes they can be very helpful between trips to the doctors. What about pain treatment? Sleeping propped up plus pain relief will help ease the night-time discomfort.

I wish you both all the best.


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Apr 2014
Posts: 236
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Gold Member (200+ posts)

Joined: Apr 2014
Posts: 236
Alpaca Thanks for your reply

The RO said the swelling was caused by Lymphedema .But as time went on it was getting worse and ear pain started and also worsened. So the Oncologist ordered a CT scan which came back positive for Cancer so a MRI was ordered and came back with the same result. So now its a recurrence and surgery No 2 is scheduled for next week 9/23/14 . We are so disappointed that the Radiation didn't even stop the cancer from recurring so soon. It has only been 5 and a half months since her first surgery and only 3 months since radiation stopped. The Oncologist explained that if my mom doesn't have surgery she would only have 6 months to a year survival .


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015


Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
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"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
I'm sorry to hear this news. It just sucks doesn't it.
My Husband Kris had a recurrence 10 months after finishing rads and chemo.
He was told that without surgery he had less than a year to live.
This will be salvage surgery. Salvage surgery is brutal and has many long term consequences for the patient. Those who think they have it bad after rads and chemo don't know nothing.
Now , for the good news. This will "salvage " your Mothers life. That's the point of it.
Kris is 2 1/2 years post his salvage surgery now. He is doing just great and I couldn't be more proud of how he has coped and adjusted. There is still really good life to be lived after Salvage surgery. Please do not dismiss this option for your Mother. I don't know of course, exactly what her salvage surgery will consist of, but this will be the only way to persue a cure. Radiation has not worked, so why would another round make any difference. It's also not long since your Mother completed her rads.
Take a deep breath. Talk long and hard with the surgeon/team. Make sure you understand fully what to expect. Then , put one foot after another, and you will be amazed at how you all cope.
Thinking of you all,
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: Apr 2014
Posts: 236
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OP Offline
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Posts: 236
Thank you Tammy for your Reply and Support

The Oncologist said if my mom has this surgery there is still only a 15 to 30 percent chance the cancer will not come back , and if or when it does come back then there will be nothing more he can do. I feel any chance even a small one is still a chance to save her life so surgery is scheduled for next Tuesday. We will encourage her to never give up the battle . Me and the rest of the family has been a good support team for her. We are praying for her to stay strong.
Thank You Again
Heidi


Sweetpe
Caregiver
RE:My Mother
Age 70
Non Smoker
SCC 3/4/2014 Left rear jaw
Mandiblctmy 3/25/2014
35RAD Completed on 06/03/2014
MRI 9/3/2014
25mm lobulated recurrence left mandible/floor of mouth carcinoma
9/23/14 Salvage Surgery
MET(s)
9/23/14 Salvage Surgery Not Successful
Chemo Recommended
1st Round of Cisplatin Chemo Started 10/20/14
Cisplatin stopped 11/20/14. Side affects to bad.
Chemo started again 1/22/15 Carbo/Docetaxel
Passed Away April 22,2015



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