trental and scar tissue

Extremely interesting! Please keep us informed of any benefits you see.

and tho I'm not having trouble now with fibrosis, that doesn't mean diddley in context of the future.....gonna put this in my fave's so I don't have to go looking for it down the road at some time.

Good work, BSB!!!

p

I haven’t heard of that, but now that you mentioned, I came across an older (2004) article that explains how it works. The treatment was not directed to H&N patients, but it must be similar.

http://jco.ascopubs.org/content/22/11/2207.full

gboothy said:

Dysphagia from Radiotherapy (Sudden Late Onset Fibrosis)

Hi blackswampyboy,

In 2012, I developed Radiation Induced Fibrosis (RIF) or Radiation Fibrosis Syndrome (RFS) or Late Radiation Tissue Injury (LRTI) or more specifically sudden Late Onset Radiation Induced Fibrosis; Velopharyngeal Incompetence & Severe Dysphagia [fibrosis from the Soft Palate down to the Upper Esophageal Sphincter (UES), inclusive].

 

My Current Treatment: Speech Pathology exercises, "Smooth Pureed" diet plus Resource Plus medical drinks and Pentoxifylline & Tocopherol (Vitamin E) antioxidant therapy.

My Current Operations: Rod Dilation by ENT Surgeon of the UES - day procedure, Balloon Dilation by ENT Surgeon of the UES - day procedure (soon) and Cricopharyngeal Myotomy (later).

The problem with sudden Late Onset Radiation Induced Dysphagia is that it can occur well beyond the normal post-radiation surveillance time; 5 years in most cases.

My decreasing frequency of physical examinations with my Radiation Oncologist had finished; no need for any future appointments.

To summarize, the only treatments for fibrosis of the UES are:

1. A modified diet down to Smooth Pureed & supplemental medical drinks
2. Speech Pathology exercises done early & for life
3. Rod & Balloon Dilations of the UES which tend to retreat over time & need to be repeated every few months
4. Surgical cutting of a muscle in the UES so that the sphincter is relieved into a more open manner
5. Antioxidant therapy

If that doesn’t work, you move on to Nasogastric (NG) TubeFeeding & then finally Percutaneous Endoscopic Gastrostomy (PEG) Tube Feeding for life.

Fibrosis escalates exponentially. Xerostomia increases.

The problem is that longitudinal statistics of late onset fibrosis (beyond a patient’s surveillance period) are not collected by radiation oncologists & the condition often goes under reported.

Sudden late onset radiation induced fibrosis (leading particularly to dysphagia) impacts on quality of life, for the rest of life.

Mortality takes precedence over morbidity in cancer treatment.

Most Head & Neck Cancer (HNC) patients know of only one post-treatment morbidity ie Osteoradionecrosis (ORN); unfortunately fibrosis induced dysphagia is another.

The only statistics that I have ever seen are from the small sample in:

Abstracts for the Tri-Society Head and Neck Oncology Meeting, Singapore, 1-3 September 2011.

Surviving survivorship: the challenge of late onset dysphagia

See page 9 of the abstract:

www.anzjsurg.com/SpringboardWebApp/userfiles/anzjs/file/2011%20Tri-Society%20Head%20and%20Neck%20Oncology%20Meeting%281%29.pdf

These statistics were collected in a survey done by a small public referral hospital in Sydney, Australia, of patients from surrounding public treatment hospitals, 2-8 years following RT/CRT for HNC.

Private hospitals in Australia treat the more common cancers only.

For all viewers; see the two irate Australian comments at the bottom of the following local newspaper story.

I made the third comment; check out my embarrassingly large Parotid Salivary Gland diagram as well!

See the article:

www.theleader.com.au/story/1239178/effect-pretty-hard-to-swallow/

What can trigger the fibrosis?

Dysphagia After Radiotherapy for Head and Neck Cancer June 2010

Susan E. Langmore and Gintas P. Krisciunas

Alternatively, those who experience a sudden (later) onset may have had an experience (trauma or surgery, addition of co-morbidity, exhaustion of compensatory mechanisms) that resulted in the addition of extra TGF-β (transforming growth factor beta), or a suppression of that threshold, thereby triggering the aberrant wound healing process.

See the abstract:

div13perspectives.asha.org/content/19/2/32.short

I have been in communication with two other people with sudden Late Onset Radiation Induced Fibrosis (Dysphagia); suddenly affected 14 years & 24 years after RT!

These sorts of people often live a reclusive, low quality life; not surviving well, but surviving poorly. They have been successfully treated for cancer & then forgotten about. Their struggle is to Survive Survivorship!

The lesson is:

Report a sudden & increasing swallowing problem for immediate diagnosis & action; albeit that treatment is limited at this stage.

It may never happen to you or happen to you only mildly.

Fibrosis is the silent, second morbidity related to radiotherapy, particularly of the head & neck.

See HNC treatment side effects:

MD Anderson’s Head and Neck Survivorship Clinic

Side Effects and Symptoms you may experience include:

1. Xerostomia (dry mouth)
2. Trismus (difficulty opening your mouth)
3. Osteoradionecrosis (ORN) - particularly the mandible (necrosis of bone as a result of radiation)
4. Dysphagia (swallowing difficulty)
5. Odynophagia (swallowing causing pain)
6. Lymphedema (swelling of the head and/or neck due to blockage of lymph vessels)
7. Hearing loss (minor through to total)
8. Hypothyroidism (not making enough thyroid hormone)

www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-topics/survivorship/survivorship-clinics/head-and-neck.html

Regards

gboothy

As one who has experienced almost everything you mention in your posting, there is one other treatment to add to your five.  So far, I am still unable to swallow however, I have experienced another benefit from the treatment.  The treatment is performed by chiropractors and is called the Graston Technique.  Before I started these treatments, I had to move my whole upper body to turn my head because of the fibrosis.  I have regained 20 to 30 degrees in range of motion each way.  The treatment is painful but worth it.  The chiropractor sort of "digs" into your neck with stainless steel instruments beside doing manipulations of the neck.  I never should have waited as long as I did before trying to do something other than esophageal dilations but, I am a great procrastinator and I'm paying for it now.  It can be checked out at www.grastontechnique.com.

I'd also add that the Trental is pretty much useless for people who cannot swallow anything at all and are using pegs.  The pill is a timed release variety so you can't crush it.  My surgical ENT said it was almost impossible to get the non-time released version.

I've been having trouble swallowing since my radiation therapy finshed January 2012. It's worse since an operation (chinese flap) 5/15/2013, I can barely get water down and just spent the last 3 weeks being tube fed. None of my health providers have offered any help, never mind solution to this problem. I get the feeling they are only interested in going for the "cure" never mind the quality of life.

Thanks for the information.