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Joined: Dec 2003
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Patient Advocate (old timer, 2000 posts)
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Great news, Gary.

Ionizing radiation is a risk factor for MGUS as well. It was published in Blood magazine back in 2009. Likewise for MDS. My elevated calcium levels led to more studies for me back to 2009. The possibilities from late effects of radiation are astounding.

One of the difficulties after radiation, is finding anyone that is well-versed on the "syndrome" side of the issues versus looking for a prevailing disease. Almost any neurological, neuromuscular, endocrine and blood disorder has some similarities to one who doesn't specialize in cancer aftercare. Radiation doesn't cause those diseases as much as presenting as a random and broad set of symptoms to manage. It's the randomness that prevents anyone from standardizing treatment protocols.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
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.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: Mar 2005
Posts: 9
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Posts: 9
"It reaches a point that "...but...at least...still alive..." doesn't cut it any more."

I agree. The older I get, the worse I tend to feel. I had many good years post surgery, radiation and chemo, but as I age, everything seems to be going down hill. As if the aging process isn't hard enough!!

Radiation .... the gift that just keeps on giving.


Donna
Stage IV SSC tongue
hemmiglossectomy/radical neck/free flap
peg tube
cisplatin/5fu
a shit ton of radiation.
17 yr cancer survivor and nobody thought I'd live 5 yrs.
Joined: Nov 2002
Posts: 3,552
Gary Offline OP
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I hear you Donna. The aging process, by itself, is brutal enough, then accelerated by the radiation therapy. Nobody thought I would live 5 years either. My original estimates were 26% chance of 5 year survival! I guess its a high class problem that we're living long enough to feel the long term effects of radiation. From the beginning I felt like RT aged me 10 years - now I am convinced. I have no pretenses about living a normal life span...


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Joined: Jun 2013
Posts: 345
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Posts: 345
This thread is both encouraging and terrifying. I'm still working on swallow recovery, though I am eating fully by mouth these days ... and I have to say, as much as I sometimes choke, I've actually wondered if swallowing liquid badly was going to cause me some sort of pneumonia. Good to know it's something I should look out for. I've also got a good doc, I just posted in another forum, he caught that my thyroid is all out of whack, which had NOT crossed my mind as part of recovery. (I swear it's still chemo brain...)

Still alive is good ... Thriving is better.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Joined: Nov 2002
Posts: 3,552
Gary Offline OP
Patient Advocate (old timer, 2000 posts)
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Kristen, knowing what I know now, I would have done all of my restaurant bucket list sooner ;-) I do have other 12+ year survivor friends who are having no issues, so just as we all respond differently to treatment, so we respond differently to post treatment as well. You may have thyroid damage because of the position of your tumor and the radiation beam entry points. They can manage that with medications. Aspiration pneumonia probably won't show up until year 10, post TX, if it shows up at all. Neck spasms were the first radiation damage issue to appear at about year 2.Swallowing liquid badly will get you pneumonia. At this early stage in treatment, they should be able to provide you with swallowing therapy that is effective. Things to watch out for down the road are baro-reflex failure. This can cause BP, heart rate and temperature problems. If this does occur, it will be at about 10 years post Tx. Just stay in the now and don't get into the future too much.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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Posts: 54
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Posts: 54
OK. This thread is very interestkng to me. I did not have radiation, only a 1\3 glossectomy with flap anterior right side of tongue. About 8 months post I was admitted to the stepdown ICU unit with FUO and sepsis. Doctors blamed it on pneumonia but nothing showed up on 2 chest xrays. I was treated in the ICU for 3 days for sepsis of unknown origin. I now wonder if it was aspiration since my new normal includes trouble chewing and swallowing anything but very small bites. I had pneumonia like symptoms for a week before I went to the hospital with fever of 102. Very interesting. My local doctors were stump ed as to why I was septic and near organ failure with no obvious source of infection.


48 yo female, quit smoking 4yrs ago, light drinker, Stage 2 SCC, Bx3, Dx 8/22/13, surgery 9/11/13. Partial glossectomy, bilateral neck dissection levels 1-4. Tongue reconstruction with flap from forearm. 87 Lymph nodes CLEAR. Tongue margins good at 1 cm. No further treatment planned. Monthly monitoring planned for upcoming year then periodic monitoring for next 4
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"Above & Beyond" Member (500+ posts)
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Posts: 642
Gary,
I have not been on this forum in a while and I am very sorry to hear of your difficulties. I am now over 12 years out and had a bad episode last year that I now also believe was aspiration pneumonia. The swallow studies do show that I aspirate thin liquids and it was suggested that I use thickener, which I do when I drink Boost. About the only other liquid that I ingest is water, which I was told is generally not too harmful if it reaches the lungs. I am told that, since I cannot swallow without drinking water, the real danger comes from small bits of food which can flow into the lungs along with the water. The therapists at MDACC suggested that I enroll in their "swallowing boot camp" to improve my swallowing, but as I am still able to eat most any non-spicy food, and only have had a one day fever episode in the last year and a half, I have not followed through.
Your posts and those of others are causing me to re-think that decision. I did have a feeding tube during treatment and I do not want to return to that. As some may recall, I am also dealing with osteonecrosis issues in my jaw, where the skin has never quite grown back in the gum after a molar came out 2 years ago. My dental oncologist keeps trying things and I see him often, and so far no need for jaw replacement.
I have been very fortunate for the last 10 years or so and have no real complaints, especially compared to the hard times and suffering that many of you have experienced. We are lucky to be around 11 plus years later but it looks like bad stuff just comes with long term survivorship.
I wish all of you the best.

Danny



Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
Joined: Dec 2003
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Patient Advocate (old timer, 2000 posts)
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Danny, what kinds of things has your dentist been trying?


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
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.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: Sep 2002
Posts: 642
"Above & Beyond" Member (500+ posts)
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Joined: Sep 2002
Posts: 642
First of all, I have had two sequestrectomies, minor surgery to remove dead bone. He has me taking Pentoxifylline, a drug which is supposed to increase blood circulation in the body, along with Vitamin E, which is supposed to increase the effect of the drug. I go in every month or so and the dental oncologist lately says that the spot is looking good and that there is evidence of some skin growth.
Since there is a hole where the molar used to be that gathers food, upon eating I immediately flush it out with sterile salt water and use clorhexidine rinse a few times a day. So far I am maintaining, which is good, because a year or so ago, I assumed that a mandibulectomy was in my near future. Long term, who knows?


Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
Joined: Dec 2003
Posts: 2,606
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Joined: Dec 2003
Posts: 2,606
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Thank you, Danny. I would guess 400 mg Pentoxifylline and 400 IU Vitamin E 3 x daily? Have you had HBOT as well?

Best wishes for all this resolving without surgery.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
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.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
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