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#191147 11-10-2015 01:20 PM
Joined: Apr 2016
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Supporting Member (50+ posts)

Joined: Apr 2016
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Hi I have been out of radiation for the past 5 years and my asthma is out of control. Experience headaches, numbness in feet and sometimes left side of face and arm. But pain in the left side of my head is making me dizzy. Could this be symptoms from radiation? My oncologist said after 5 years you are cured. But what about and who follows you after radiation. My radiation oncologist only saw me for two years after. I wonder if all my difficulties are from post radiation. Has anyone ever experienced this?


SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction
#191152 11-10-2015 11:25 PM
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
Hi, did you have Cisplatin chemo as part of your treatment? This could account for the numbness in your feet. The neck dissections could be responsible for the numbness in your face . I couldn't comment on the asthma as there are too many variables such as smoking history, COPD, allergies etc. Are you experiencing dizziness from maybe blood pressure meds, or arrhythmia medications? I would be wanting a full assessment from a physician if this was me.
Maybe Uptown will chime in as he has a lot of experience with post radiation type syndromes.
I wish you well in getting to the bottom of this.
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!
#191153 11-11-2015 05:43 AM
Joined: Jul 2012
Posts: 3,267
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Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
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Treatments have acute, and long term side effects, lasting more than 3 months. The problem with that some of these long term side effects, even short term, is that they occur in other illnesses, conditions, as noted, can be a result from medication, increase as we age, so proving what is associated with our cancer or from treatment side effects is difficult to prove, as I have found even for myself, and wouldn't really change matters much as far as my symptoms, treatments, but only my curiosity, maybe help others in the future.

One thing I have found with any of my complaints of pain, numbness, my doctors want to rule out cancer, which is usually the first priority, so they're always poking and prodding. For example, the Brachial Plexopathy, a result from high dose radiation to level V, occurs in other things too. Anyway, my neurologist sent me for MRI to rule out cancer, and being it still persists, she wanted to know when my next neck PET/CT scan is, although most likely radiation related, she said lets not take it for granted it is, and not a recurrence, just to be safe. Another example is my jaw pain, which worsened the last few weeks, so my oral surgeon did an oral CT scan to help rule out cancer, check on the ORN, if it was worsening.

I hope this helps, and 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






#191159 11-11-2015 09:28 PM
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
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As PaulB and tamvonk says, any pain as well as anything new should be evaluated by your medical team, even if you were told you are now cured.

To answer the question, yes all of that can be late effects of chemo and/or radiation. We can even have brachial plexopathy from the head or top of the brachial plexus nerve bundle that is around C-3 in the cervical spine caused by what is termed "drop neck syndrome" or just having the scalene muscles developing fibrosis from radiation. People texting all the time or working on a computer all day can develop the same pain radiating from the scalenes. The pain, tingling and numbness will usually go over the outside of the shoulder and down the arm.

I am more concerned with the numbness and symptoms on the side of your head. That might be early signs of carotid artery occlusion. If you haven't had a baseline Doppler study ofnthe carotids, I would do that soon. If you have and it's been a few years, it might be worthwhile to have another one. Be sure and let the doctor know and if you are having intermittent headaches, mention it. One thing that I learned from an aftercare PCP is non-HDL cholesterol should be kept around or below 100 if the carotids were in the radiation field, as any cholesterol plaque accumulation innthe carotids can dislodge and cause a stroke. Vision or hearing issues are also something to be checked out.

Your asthma could also be signs of aspiration if you haven't done any swallow studies. We should have one the first couple of years after treatment and then if we have any swallowing problems later. Aspiration in the lungs can easily cause wheezing and bronchial spasms or difficulty breathing.

I have been doing extensive research on the connection between the vagus nerve, the sinus branch and the timpanic nerve as they are related to the dizziness and issues of barorecptor dysfunction or jaw pain that is common with tongue and tonsil radiation, especially with nodal involvement.

The crazy part in all this is nobody really follows us for post radiation issues, mostly because it is so variable by patient. I was just lucky enough to get more than a couple of them.


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

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