PPALM study

The randomised controlled trial I am in is described here https://clinicaltrials.gov/ct2/show/NCT02230800

PPALM stands for Palm Oil and Pentoxifylline Against Late Morbidity (PPALM)

It is designed to treat Long-term Adverse Effects of Radiotherapy for Pelvic Cancer

The researchers say:

Side effects are common after treatment with radiotherapy for tumours in the pelvis and can affect the way the bowel and urinary system work as well as causing sexual difficulties, skin damage and bone problems. Problems in the bowel, bladder, sexual organs and skin mostly result from thickening of the tissues in response to radiotherapy, a process called "fibrosis". Fibrosis often worsens over time.

There has been progress in treating bowel symptoms which usually are the worst problem after radiotherapy. However, even after receiving the best possible treatments, while many patients are better, they are often not cured of all their difficult problems.

For some years, it has been hypothesised that if fibrosis could be treated then symptoms would improve. Recent research in laboratory animals has suggested that an effective treatment for radiation-induced fibrosis is combination therapy with a drug called Pentoxifylline together with a nutritional supplement containing gamma-tocotrienol (Tocovid SupraBio), a substance derived from palm oil. Both of these agents are simple to take and side effects are rare.

This study will recruit volunteers who continue to have difficult side effects after previous radiotherapy to the pelvis despite receiving the best treatments available from a unique clinic at The Royal Marsden which has pioneered treatment for bowel problems after radiotherapy. Two out of every three volunteers who take part, will be randomly assigned to treatment with Pentoxifylline and Tocovid SupraBio, while one out of three will receive dummy pills. Neither the patients nor the staff assessing them will know which treatment they have been given. Volunteers take the active treatments or dummy tablets for a year and will be assessed regularly while on treatment and for a year afterwards. This study will show whether active treatment is more effective than dummy pills in improving the symptoms caused by radiation-induced fibrosis.

I am convinced that I am in the treatment arm as my bowel symptoms have improved in the seven months I've been taking the pills. Then again, placebo is a powerful thing... I don't have any side effects, but the pills are large and sticky and often get stuck halfway down when swallowing.  Still, I persist.  It's great to get the TLC form the trial nurse...

4 people like this post.
Sign in or sign up to post a comment.
Well wouldn't it be wonderful if it did prove effective! Keep us posted please!
Mary likes this comment
Interesting information.
Thank you
Mary likes this comment
Thank you for info. This applies to my ca as well (HNC). I've noticed the scar tissue around the area where my left tonsil was, getting thicker.
Mary likes this comment
I can't imagine what it might be like to have that kind of thickening in the mouth/throat, but I am very much aware that HPV/squamous cell cancer affects the throat. Have you had any cervical cell changes/signs of HPV?
I'm fascinated by who gets which type of HPV-related/squamous cell cancer in different places and why. I need to look up (HNC), maybe its different... Excuse my not knowing.
Marcia likes this comment
Many HNC survivors have to have a throats dilation on occasion. From what I know, it's under anesthesia and no pain at all when you awake. I'm negative for cervical and anal Hpv. Now I could swear my first oncology visit before my surgeries, that the oncologist told me if you have HNC you won't get cervical or anal......and vice versa. I believe radiation is worse for Anal, Cervical and HNC because these are all "openings" with sensitive mucous membranes. Yet, we probably heal faster because of the blood being closer to the skin surface. I have no idea if I'm right, but it just seems kind of logical.
Mary likes this comment
Well, I had pre-cancerous cin3 cervical cell changes and then 18 years later developed anal cancer. My gut instinct is that they are NOT unrelated. A gynaecologist told told me I had been very 'unlucky', and that a third hit (ie a HNC) was a tiny weeny risk. But surely some people's DNA or lifestyle or whatever, might mean they are more vulnerable. I don't feel I have enough info on this subject, and I suspect the research has not yet been done. Has anyone on this sight had BOTH cervical cell changes/cancer (or Vulval/vaginal) AND anal cancer? Or a HNC and a gyae/anal cancer? If HPV causes sqaumous cell cancers in these different palces, why would getting one protect against getting another? What wouild the protective mechanism be? I was very interested to hear about throat dilation. I didn't know that.
Wonderful 👍
VERY interesting study! Can’t wait to hear the final results. Know what you mean about pills getting stuck—I’ve had that problem for years. I find that eating a bite of moist food can help them go down all the way. Good luck!
Mary likes this comment
Thanks for the info Mary!
Mary likes this comment
This sounds great. I’d be interested for myself as well. Keep us posted and congratulations on your improvements!
Mary likes this comment
Thanks for sending this on, very interesting reading. It seems a fairly simple pill that they are trying out, it would be good to see the outcomes later on this year.
Mary likes this comment
I'm glad you took part in this study and it sounds like you may have gotten the medication instead of a placebo. I'm glad you have seen improvement in your symptoms. Thanks for posting.
Mary likes this comment
very interesting; please post updates when they become available
Sign in or sign up to post a comment.
avatar

Vital Info

Posts

April 16, 2018

London, United Kingdom SW14

January 2, 1959

Cancer Info

Anal Cancer

Squamous cell carcinoma

Stage 1

0.1 - 1.0 cm

Grade 1

No

Empathise, share experiences and practical tips. Share new reliable research knowledge

The Marsden, Sutton, England

August 22, 2015

No

originally: tiny amounts of bleeding, fecal incontinence, passing of clear mucous. Later itching at the site of the tumour.

Stats

Posts: 6
Photos: 0
Events: 0
Supporters: 44
Friends: 26
Comments:
-Made: 0
-Received: 58
Views:
-Posts: 3518
-Photos:

New Here?

We are a community of cancer survivors supporting each other. Sign up to comment or create your own cancer blog. Already a member? Sign in