Pentoxifylline

Is anyone taking this. It is used to treat severe fibrosis of radiated muscle tissue as well as treating radiation and bisphosphonate necrosis of the jaw.

It sounds too good to be true and you know what that usually means.

Ed

No, but it's also used to treat ulcers that don't heal in the mouth, and to treat trismus, but is limited in help.

I used it years ago post-RT. My RO prescribed it to help heal the mouth ulcers and ward off some necrosis of my jaw. He prescribed it along with Vitamin E. He said to try it before going thru HBO. Not sure if it help as I did see some improvement, but did eventually go with HBO.

It says for neuropathy too. Did it help with that? I still have it severe, but a lot better than when it caused paralysis, but still limits my activities.

So far I haven't had problems with neuropathy and I hope it stays that way!

Ok, if this drug is now used for radiation related fibrosis and calcium buildup in veins and muscles why do we have 0/9,000 people here using it? From a couple studies I read, this may be one thing to stop or even reverse the fibrosis 100% of head and neck cancer patients get from radiation. It may be the ONLY thing that does this. It sounds groundbreaking. Surely we have at least ONE story.

Could depend on a number of factors, but unrelated in treatment, I had IORT, intraoperative radiation treatment, last August, and no one reported having it, out of all the members. Two made brief inquiries in 2005, and that's about it, although being effective in a number of study's, in use for years, and more popular Europe, Japan, especially for last chance recurrences for SCC. Sometimes there are other procedures that are more cost effective, popular, even if not better, not Medicare or Medicaid approved, not FDA approved for this disease.

I would like to update you on the Pentoxifylline (Trental) / Alpha-Tocopherol (Vit E) regimen. I started about 3 weeks ago with 400 mg/400IU respectively 3 x daily. I began noticing within the first 24 hours a lot of the veins in my left arm and hand swelling up. They have shrunk considerably over the past 2 years in particular. I believe this is because of serum calcium levels around 10.8-10.9 for many months. One plus for the above regimen is clearing calcium plaque from veins. The muscles between my thumb and forefinger on the left hand increased in size. It is hard to tell if there is a net gain because other muscles in the arm and hand have atrophied.

The left SCM has turned to hard fibrous strands. This area became slightly softer but more supple. I was able to have these muscles stretched out for more neck range of motion than experienced in the last 4-5 years. My quadriceps and other upper leg muscles have become hard like tendons. I have been working them very hard for this year. I have been able to stretch them extremely well and I also increased the weight I leg press by 100 lbs in the second week using the regimen. My legs have gained significant bulk but I did not measure the girth before.

In the first week I increased my time on the stationary bike by an hour and from 22 miles to 41 miles. I don't know I can positively attribute the gains too the drug regimen. I also loaded lots of carbs and potassium before the workout for 24 hours. Nothing else was done, however.

One interesting caution was the side effects from day one. I noticed an irregular heartbeat, heart racing, increased blood pressure and increased heart rate. Also, slight dizziness and orthostatic hypotension. Rapid movement of eyes causes blurred vision as if the optic nerves can't adjust the clarity fast enough. The same feeling of muscle confusion occurs in the left hand and arm and both legs and may just be progression of the disorder.

At my doctor's request I backed down the frequency to twice daily. Within 24 hours I noticed significant reversal of all the gains with worse fine motor skills in the left hand which leads me to believe it is progression. I increased the frequency to 3 x daily and everything was restored.

My left calf starts reducing in size and if I exercise it I can see the increase in bulk. I can maintain the size without additional conditioning for 3-4 days. When I reduced the frequency from 3 a day to 2, the calf began shrinking within hours.

I am currently scheduling HBOT to try and regenerate marrow production in all cervical vertebrae to reduce the risk of radio osteonecrosis of the spine. The increased vascular supply in combination with the above regimen is expected to increase blood flow to the vertebrae.

When doing HBO, watch for your vision to have significant changes. These changes usually occur around 10 - 14 days into the treatments. It usually is only temporary but I have heard from other members of HBO helping to make them develop early glaucoma, so pay attention to any change you notice. For me it was my far distance sight which was affected, driving became a bit blurry with far away road signs. I could easily make out people, cars, etc so I continued to drive. My sight returned back to normal at about 4-6 weeks post HBO. My vision had temporary changes 3 out of the 4 times Ive done HBO.

Be prepared to have HBO seem like its a full time job. Relax and try to take a nap to help the time in the tank not seem so bad. I was extra busy when I did my last rounds of HBO so it was a bit stressful for me to lay there "killing time" when I had a million other things I needed to be working on.

Good luck, hope it works for you.

Thanks for the tips Christine. I appreciate your input. I seem to have developed wide angle glaucoma in the past couple years. Don't know how the HBO will impact that. I probably should reschedule with the neurological ophthalmologist.