Pentoxifylline + Vitamin E for radiation-induced Muscle Atrophy? Anyone?

14qr23we · December 2013

Good day fellow survivors

I'm a new member who accidentally found this site while searching for a solution regarding

one of the late radiation side-effect that i have been experiencing. I was treated for NPCA

on 2005 when i was 21 yrs old and there were no recurrence since then.

Among some of the side-effects that i'm concentrating on right now is skin/soft tissue and

muscle atrophy. Parts of my body included in the radiation treatment field and atrophied,

which includes the lower half of my face, neck and the upper middle portion of my chest and

back. In these areas the skin is thin, there is almost no fat, and muscles are atrophied.

I look like a high school kid (college if I'm going to be nice to myself) even now at 29 years old.

Regarding skin atrophy I was able to find out (thru research) about Hyaluronic acid / Sodium

Hyaluronate, a compound that reverses skin atrophy in patients who underwent topical steroid

therapy on their skin (derma patients). I tried to use this compound thru Olay Regenerist

Micro-sculpting Cream and i found that it really helps thicken the skin. My face and neck doesn't

look too "dried up" anymore and the skin is thicker, it really works. I have been using the product

for a little more than 2 weeks and I am pleased with the results, although I am not sure if this

improvement is permanent, i guess i will find out soon enough..

Now for my main concern. I read up recently that Pentoxifylline + Vitamin E can reverse Radiation

Fibrosis. I've seen at least 2 studies (journals) proving this fact and I've also seen other websites

recommending its use. And it is already written in a pharmaceutical directory that i have that the said

drug (Pentoxifylline) is used for radiation fibrosis..

My question is, since radiation fibrosis is basically damage to the soft tissue components (skin, muscle)

and pentoxifylline works for it, can it also be used for muscle atrophy which is basically also a form

of soft tissue damage? Actually I've started taking the drug/supplement combination for more than a month

now and I've yet to see any drastic improvement but I'm willing to extend my intake indefinitely since in some

of the journals that I've read the patients took the drug for more than 6 months.

My other question is, is there anyone in this forum who have taken these medications? Can you please

share your experience? Thank you very much

14qr23we · December 2013

Actually, I'm also doing neck

Actually, I'm also doing neck exercises (with weights) along with taking Pentoxifylline + Vitamin E

corleone · December 2013

Pentoxifylline + Vitamin E

I guess no one on this forum has previous experience with this, hence 0 answers. I am NPC 1 year post treatment, and I would also be interested to learn more about this, but anyone (medical team) I ask says it’s highly experimental, so … no way.

Pentoxifylline + Vitamin E seem to be effective in radiation-induced fibrosis, but from what I’ve seen studies were done for other type of cancers (like breast). It should be equally effective, but I can’t just take this treatment on my own, and nobody seems to be willing to prescribe it; so I am hoping someday somebody will.

Regarding muscle atrophy. I guess this is secondary to fibrosis, including nerves and blood vessels damage. So if treatment reverses fibrosis, I doubt it will also improve muscle mass by itself, but it will create conditions for that, if you exercise. 　

lornal · December 2013

corleone said:
Pentoxifylline + Vitamin E
I guess no one on this forum has previous experience with this, hence 0 answers. I am NPC 1 year post treatment, and I would also be interested to learn more about this, but anyone (medical team) I ask says it’s highly experimental, so … no way.

Pentoxifylline + Vitamin E seem to be effective in radiation-induced fibrosis, but from what I’ve seen studies were done for other type of cancers (like breast). It should be equally effective, but I can’t just take this treatment on my own, and nobody seems to be willing to prescribe it; so I am hoping someday somebody will.

Regarding muscle atrophy. I guess this is secondary to fibrosis, including nerves and blood vessels damage. So if treatment reverses fibrosis, I doubt it will also improve muscle mass by itself, but it will create conditions for that, if you exercise. 　

Fribrosis

I have it the fibrosis pretty bad 6 years after treatment. I can't swallow and need to have my esophagus dilated often (12 times since April). Have a feeding tube now. And, I can't talk - all beacause of the scar tissue. I will need to see the progress of the pentoxifylline & Vitamin E studies - maybe it can help me one day.

n5 · October 2014

Pentoxifyline & Vitamin E

Hello,

Yes I am using this treatment and have been using it for approx 18 months. This treatment was first put forward by Dr Sylvie Delanian a French Cosultant working in Paris France.

I live in the UK and found her by serching the internet about 3/4 years ago, for the last 2 years I have been seeing her and have been taking her recommended course of treatment PENTOCLO which is Pentoxifyline, Tocrophyl and Chlodronate. The treatment not harmful as these are all tried and tested drugs currently on the market and I believe it is helping me. My condition is Radiation Induced Radiculo Plexopathy caused by too much radiation given over 34 yaers ago the affects of which starting showing themselves about 17 years ago. It has caused slowly worsening muscle wastage in my legs caused by nerve damage from the radiation.

I emailed Dr Delanian about 2 years ago and made an appointment to see her in Paris, as from my research she is the only Consultant reserching this field in the world. She is currently in the middle a full double blind medical trial in France but the early results have shown promise.

As the treatment is basicly harmless, I have been taking it for the last 18 months, and there have been small changes. I am not expecting miracles and will be happy if the RIRP does not continue to get worse.

Regards

n5

Yash Patel · March 2020

Hi, my wife is also having

Hi, my wife is also having same problems with severe trismus and pain post radio chemotherapy for tongue cancer. We both are doctors and we have started her on vitamin e and pentoxifylline. I am eager to know wheather it relieves radiation fibrosis syndrome.

Logan51 · March 2020

Yash

I didn't know what trismus was until now, and I am very sorry your Wife is having this problem. The link below explained it to me. I have the neck spasms, which a Neurologist got to witness on my first visit with him. Been on Clonazepam and Baclofen for years, now. Being 11 years out to the good, the neck spasms started about a year, post-tx, and continued getting worse. The 2 meds have helped a lot. Your Wife's problem is different, of course, and all I can advise is seek advice from a major C Medical Center, like Sloan-Kettering or MD Anderson in Houston, or Mayo's. Did find the link below, but not sure it will be of any help, other than maybe it will open a door to someone who can help. The ahns stands for American Head and Neck Society.

https://www.ahns.info/survivorship_intro/radiation-fibrosis/

Mavish · April 2020

Hi all , Ii am on

Hi all , Ii am on pentoxiphyline and Vitamin E for osteoradionecrosis in my maxilla. My original dr thinks that there is not enough evidence demonstrating effectiveness, the doctor at the late effects clinic wanted me to give it a try. Now it has been about 8 mo. I have still have issues I lost 2 of my teeth ( self extraction) they came out on their own due to the necrosis in the bone. In my opinion, they are not creating a magic, but who knows how I eould be if I did not take them. So I keep taking them.

HobbsDoggy · April 2020

Can This Occur Much Later?

Can this happen many years after radtiation? I am having similar symptions 9 years after radiation. Thanks!

Pentoxifylline + Vitamin E for radiation-induced Muscle Atrophy? Anyone?

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