Anybody heard of the drug nefopam?

[radiantquest]

DH has a desmoid tumor. For anyone that isn't familiar with it, it is a tumor that decides to grow inside a muscle. It is considered a benign cancer. It is very aggressive in that it grows like a weed and if you remove it there is a very large chance that it will return with a vengeance.

I may have mentioned before about his tumor. It is in his upper right arm. We went to specialists and doctors and their suggestion was chemotherapy. He did weekly treatments of chemotherapy for about 18 months. He has a port in his chest to take the IV medications directly into his largest veins that will circulate it quickly. Yes, it kept it from growing and maybe even shrank, but only by <1mm a month. He was incredibly sick, forced to keep working and damaged some major organs. All in all we decided that it wasn't worth it for his quality of life. The treatment was worse than the tumor. The only other thing our doctor was willing to do was remove it. If we remove it, they would also remove a large amount of the muscle surrounding it. This would leave poor DH permanently disabled. He would no longer be able to move his elbow from his side and wouldn't even be able to use his wrist correctly.

It has been growing and we have been doing research into other treatments. Some advancements have been made in curing desmoid tumors. One of the promising drugs is nefopam. From what we can tell it is used in nearly every other country, but isn't approved by the FDA in America therefore we cannot get it as of now.

Are there any members here that know anything about nefopam. DH is considering trying to get it off the internet, but that scares me. Has anyone ever taken it? What are the side effects? Any scary cases where something tragic has happened from taking nefopam?

 

[mary poppins]

I haven't heard of desmoid tumors or nefopam. Just wanted to say that I'm sorry to hear that you and your husband are going through a difficult time with health issues. I hope he finds something that will help soon and makes a full recovery.

 

[sonnyjane]

I haven't heard of desmoid tumors or nefopam. Just wanted to say that I'm sorry to hear that you and your husband are going through a difficult time with health issues. I hope he finds something that will help soon and makes a full recovery.

Same. I haven't heard of this condition or of the medication but I am sorry you are dealing with this!

I DO want to emphasize that your husband should NOT try to just order this stuff off the internet. There is absolutely no guarantee that drugs bought over the internet are in any way the same ingredients or dosage as the real thing. There was a show about this on one of the major networks that I watched and it found that in most cases, the pills were made with only small traces of the actual drug and mostly filler material, rendering them ineffective. Some of the pills had absolutely NO drug in them at all and were simply sugar pills. That's the BEST case scenario, that it would be ineffective. The worst case would be that the pills contained something dangerous or in too high a dose and that could of course be lethal.

Have you looked into any drug trials that might be going on here in the states in which he could participate?

 

[mimi72]

I am a physician but NOT an oncologist. These are general thoughts. Desmoid is an uncommon type of tumor. That means any given community oncologist will not have treated many of them in their careers. If not already, make sure DH is established at a tertiary academic medical center. It doesn't have to be MD Anderson or Mayo Clinic, but seek out the nearest large academic center which most likely will be affiliated with a medical school. These are the people who will not only be able to advise the best standard of care treatment, but will be able to enroll DH in research trials if standard treatments fail. If surgery is an option, they will also have surgeons (ortho/plastics/reconstructive) with the experience and skill to minimize any resulting debility, with help from excellent physical/occupational therapists post-op.

For every type of cancer treatment, or the management of any chronic serious debilitating disease, one has to balance the chance of cure or long term remission with treatment toxicity and quality of life.

I don't know anything about nefopam other than what I briefly googled. I would NOT order it off the internet with the intention of self-treatment. That is a recipe for disaster for so many reasons I won't even list them. This is cancer we are talking about. Don't let the word benign fool you. Make sure you and DH ask questions about prognosis for all the treatment options.

In searching for information, I found this organization which provides support and research for desmoid tumor patients and their families:

http://www.dtrf.org/dtrf_index.html

I woud contact them and ask for help/support/questions about nefopam. Importantly, they should also be able to refer you to the nearest oncologist specializing in desmoid tumor treatment/research.

 

[Kaleigh]

First off so sorry your husband is going through this. I echo Mimi is finding an Oncologist that is researching and doing trials for this type of tumor. Teaching hopsitals are best.

If the drug is available in another country go there after doing your due diligence. BUT don't order the meds off the internet,

I pray for a full recovery, and hope he's doing better soon.

Hugs and please keep us posted and if there is anything we can do for you both.

 

[Beacon]

So sorry you are facing this and I recall you mentioned it a long time back. Sorry it is still around

I would guess you should seek out a top cancer facility that can help you. In this case, something like Memorial Sloan Kettering or Dana Farber. Don't know where you are located. Anyway, with something rare like this you want to find people who have dealt with it before. There are people who will specialize in this type of tumor and you want to seek them out. It makes a huge difference where you are treated and who sees you. Best to find the absolute specialist in this problem. You can go to such a place (like Memorial or Dana Farber) be seen and have them direct your local oncologist as to the correct care for your DH. I know people who have done this kind of thing when their disease was so rare.

If surgery is the solution, seek out the best one who specializes in arm/hand surgery. They are out there. Get some consults with a few of them and see if a surgery can be done in a way that gives him more functionality. Don't give up!!

I am really sorry to hear your DH is suffering from this persistent darned thing! Don't order off the internet - way too much chance of disaster.

 

[yennyfire]

I have nothing medical to add, as I'm not a doctor, but I just wanted to send you hugs and let you know that I'll keep you in my thoughts are prayers. Mimi's advice is very sound and I hope that it's helpful to you.

 

[radiantquest]

Went to Sinai hospital and found a desmoid specialist. By specialist, I mean, that he had seen one before. It is so rare that most doctors have never even heard of one in practice. That is why there isn't great strides in research and treatment. There just aren't enough cases to get the funding and experience. Another thing that adds to the fact that treatment is so difficult is that not all desmoid tumors react the same way to the treatments. Basically every patient is a lab rat and the doctors are pulling treatment options out of a hat and saying "lets see if this will work" Its incredibly frustrating. They aren't even completely sure what causes them. He also brought other doctors in from other areas that were affiliated with the hospital for our appointments. We spent a year seeing this specialist, then had a local oncologist that administered his chemotherapy.

I explained to DH that he shouldn't buy off the internet and he stupidly replied that you can buy cell phones, clothes, etc online. Its one thing to buy a product that you know what it should look like and how it should act, with medicine it is a very different story.

We have been talking about getting him into medical trials. Haven't found one yet. From what I know nefopam has only been tested in mice in the US til now. We are both members on a desmoid tumor forum. Honestly, though, this tumor can really wreak havoc on a body and can scare us hearing about other people. His doctor told him to read a book written by a baseball player that got one in the same place has DH got his. He had to have his arm amputated. That is not an inspiring book that DH is willing to read.

I am not surprised that no one has ever heard of desmoid tumors. I was hoping that people from other countries had heard of nefopam. If anyone should stumble across any info please let me know.

 

[1tal1]

Nefopam, also known as acupan, is widely used in Europe as a pain medication. If you google it by the name of acupan, you'll come across a list of countries where it's sold (by prescription as far as I can tell).

Here's a study I recently tracked down <b>A High Throughput Screen Identifies Nefopam as Targeting Cell Proliferation in β-Catenin Driven Neoplastic and Reactive Fibroproliferative Disorders</b> http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0037940

while searching for more information after reading about a Canadian doctor, Benjamin Alman, who is a specialist in desmoid tumor.

<b>Canadian discovers method to radically minimize scars </b>
http://www.theglobeandmail.com/life/health-and-fitness/canadian-discovers-method-to-radically-minimize-scars/article4108242/

The drug appears to have a good safety record.

According to my research, and despite what a previous poster implied, desmoid tumor is NOT considered to be cancer. I don't know where you are located but if it was my family memeber, I'd attempt to caontact Dr Alman in Toronto. Good luck with your search.