Looking for help with radiation fibrosis; Tips?

I'm 6+ yr survivor of extensively treated Stage 4 squamous cell esophageal carcinoma. I have extensive post-radiotherapy induced reactive mediastinal pulmonary and esophageal fibrosis. I'm also a retired professor of pathology & lab medicine and biopharmaceutical executive. My former grant funded research interests were focused on the pathobiology of genetic/metabolic changes in the genetic expression and metabolism of the extracelluar matrix in various disease states including pulmonary fibrosis and stricture formation.

There are a number of ongoing investigations and peer-reviewed publications exploring the repurposing of approved drugs for the treatment and management of post-radiotherapy fibrosis.
Here is a current summary of my on-going search of the current literature some of the key areas of research of potential re-puposing of various approved pharmaceuticals that may be potentially effective in reducing radiotherapy induced fibrosis. You may want to discuss these findings with your health care providers to explore the feasibility of using some of these drugs on a trial basis to see if they have any effect on your fibrosis.
1. Combination Therapy with Pentoxifylline and Vitamin E:
* This is one of the most studied and recognized approaches for treating radiation-induced fibrosis.
* Pentoxifylline, a drug that improves blood flow, is often combined with tocopherol (vitamin E), an antioxidant.
* While some small clinical trials have shown promising results, larger trials have had mixed outcomes, with some demonstrating little to no benefit over a placebo.
* The combination is still considered a "standard treatment" in some contexts, particularly for severe cases, and is being investigated in new clinical trials, sometimes alongside other interventions like spa care.
2. Other Repurposed Drugs and Classes of Medications:
* ACE Inhibitors: Medications for hypertension like captopril and ramipril (ACE inhibitors) have been studied for their potential to help with early and late-arising radiation injuries to organs like the lungs and kidneys.
* Statins: These cholesterol-lowering drugs have shown potential in animal studies to reduce the severity of radiation fibrosis and have been suggested to improve outcomes in cancer patients. A Phase 2 human study in Europe confirmed they reduced the severity of radiation fibrosis.
* Pirfenidone: This drug, approved for idiopathic pulmonary fibrosis (IPF), has been studied in a pilot clinical trial for its effectiveness in preventing or lessening radiation-induced fibrosis.
* Other Potential Candidates: Research is ongoing into a variety of other drugs, often identified through computational methods and bioinformatics. These include:
* Metformin: An anti-diabetic drug that may decrease radiation doses and reduce costs.
* Aspirin: A common anti-inflammatory drug that has been investigated for its ability to improve cancer patient outcomes and reduce radiation doses.
* Beta-blockers: Medications for cardiovascular issues, such as propranolol, are being studied for their anti-inflammatory properties and potential to improve patient outcomes.
3. Clinical Trials:
* A number of clinical trials are listed on databases like ClinicalTrials.gov, investigating various treatments for radiation fibrosis.
* These trials often focus on specific types of fibrosis, such as those affecting the breast, lungs, or neck.
* Some trials combine repurposed drugs (like pentoxifylline and vitamin E) with other therapies, such as physical therapy or novel devices.
4. Peer-Reviewed Publications:
* Numerous peer-reviewed articles have been published on this topic, ranging from reviews of existing literature to original research on drug repurposing.
* Some publications use computational approaches to identify new drug candidates for fibrosis by analyzing genetic and molecular pathways common to various fibrotic diseases. This helps identify drugs, such as captopril and ibuprofen, that may have anti-fibrotic effects.
* There are also publications that specifically focus on the mechanisms of how certain drugs, like pentoxifylline and ACE inhibitors, might mitigate radiation-induced damage.
In summary, the re-purposing of approved drugs for post-radiotherapy fibrosis is a very active area of research. While a definitive "cure" remains elusive, a variety of drugs are being investigated, with pentoxifylline and vitamin E being the most established "combination and other classes of drugs like ACE inhibitors and statins showing promising results.

@lily
Had appt with doctor at the Late Effects of Radiation Clinic in Princess Margaret Cancer Centre (PMCC) - and had mentioned to him re possibility of botox or steroids or trigger point injections. From what I understand is that it depends on the main cause of speech impairment - tongue does not have the flexibility of movement - and the swallowing issues. I also have numbness in my lower jaw and lips - and believe this also cause drooling.
Re the injections 'that might help' - he will refer me to another doctor who administer these injections in PMCC to assess.
Hope this helps.

Thank you so much for sharing the information. I was surprised to hear that the doctor you saw, had several treatment options. I am curious as to what exactly is a trigger-point injection? Will you be trying this? I don't know if you are able to send me a private message with the doctor's name. I also would like to know if she had ordered the MRI, or a it was from another doctor. Is it an MRI of the neck only. My husband is dealing with pain from fibrosis.

@sharonlee hello, my pcp ordered the mri…. Nothing special, non-contrast cervical only. Call for an appointment as a new patient: Brigham and Women’s Center for Pain Medicine, 850 Boylston Street, Chestnut Hill. Good luck, I’ll be receiving 10 injections all at once in about two weeks from today. This thread doesn’t allow phone numbers to be posted.

Thank you. My very best to you.

Are you still doing the exercises? How is it going?

Yes - I try to do about 10-15 mins daily before bedtime - concentration on my jaw, neck, shoulders and tongue. Also, now and then or when I am driving (usually on my own) - I do jaw stretching exercises as well.
Not sure if the exercises helps (not measurable unlike taking an Advil for pain relief) - but am hoping that this will stop and/or delay the late effects of radiation from getting worse.

I have made the same choice but have not gone through what you have. I am independent and will not permit company of hardly any kind, especially sympathizers who represent any kind of pity party in my behalf. But I’ll tell you of a truth- these forums provided by Mayo are so helpful I don’t feel alone at all anymore. And if I can’t eat then I can’t eat- no feeding tube for my either! Stay strong & best wishes. Sincerely, Robert

I'm fighting the restricted mobility from fibrosis with daily excercises but it's a losing battle, bit by bit. Far worse, has been the pain down the back of my neck on both sides. After following leads from this forum, and my own research, I found the Brigham and Women's Pain Management Center in Chestnut Hill, MA. The physician administered trigger point injections, one of several options she said is available. She told me to give it two weeks or so but my patience has me evaluating the situation daily. Today is day eight following treatment. It is the first day, in I can't remember how long, that I walked the dog pain free in the morning. I'm afraid family and friends are getting weary of listening. Best of luck to us all.

Hey ... hear you.
Best is to tell yourself and feel good that you did your best (in looking up and having trigger point injections) in managing the fibrosis.
I had nasopharyngeal IV treatment in 2006, and diagnosed with severe neck fibrosis, dysphagia, dysarthria, etc, etc in mid 2020 - and to this day, am still trying to find treatments that might help.
Take a day at a time - take care!