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Future Trials

PostPosted: Tue Jan 14, 2014 1:22 pm
by hudson
Fantastic news about the possible reductions with XIAPEX and Lipomas. How do you recruit for the trials? Would love to be considered! I suffer from familial multiple lipomatosis and have around 23 Lipomas at present. So far have had 4 surgically removed. Not that fussed about the scarring but more about the down time that surgery causes as I'm quite an active person. Anyway, love to hear about future trials.

Re: Future Trials

PostPosted: Thu Jan 23, 2014 7:37 pm
by jlantrip
I emailed them and asked, they said the trials are only taking place on the east coast, didn't mentions specifics though.

Re: Future Trials

PostPosted: Tue Jan 28, 2014 6:26 pm
by danae453
Where on the east coast? I would love to have more information about the trials. I wish I had only 23. I have huge lipomas in my belly area - some the size of a big lemon or a small orange. Other little ones - oh - about 4 at the last count. I have some that are in line with some ribs that sometimes cause pain. I have two about the size of the large size marbles at the bottom of my sternum.

My big question is : Why is this considered a disease in canines but not in humans? I am told that getting rid of these through surgery is considered cosmetic. Why is that?

Neither my dermatologist nor internist have any concern about the lipomas. They are distressful for me. Does anyone relate?

jlantrip, to whom did you send an email? I would like to pursue getting more information about the trials. I've been dealing with these for over 20 years.

THANKS!

Re: Future Trials

PostPosted: Sun Mar 09, 2014 12:54 am
by elizrichardson
Danae
I'm actually on because I'm looking for help getting into the clinical trials for dog lipomas and there aren't any posts on that forum. However, I read what you wrote about your lipomas and if you'll pardon my meddling, I'd like to invite you take a look at a website I put together describing a technique I've used professionally with a lot of people suffering from a variety of physical and mental health problems. I'm always looking to expand my experience and skill, and if it sounds interesting to you if be happy to try it on you at no charge. I often work by phone when someone is unable to come into my DC- area office. I'm curious to see if your lipomas would respond. The site is MindBodyStressMgmt with a com on the end.

Having said that, do you have any idea whom to call our email about clinical trials?
Best regards, Elizabeth Richardson

Re: Future Trials

PostPosted: Wed Mar 26, 2014 1:22 pm
by jlantrip
I was replied to by this person:
jsoma@biospecifics.com


Lipomas are considered cosmetic because they don't pose a threat to your life specifically. I do believe some lipoma excitation can be covered if they are causing pain or some other oddity, check with your insurance.

Re: Future Trials

PostPosted: Sun Jul 06, 2014 11:52 pm
by 1234589
I have several lipomas in the arm, which are growing in the other arm. I'm in Brazil, I am interested in clinical trials here in my country.

Re: Future Trials

PostPosted: Mon Aug 25, 2014 5:23 pm
by bernadette
Danae,
I too have lipomas all over my body. Mine can be the size of a pea to the size of a lime. I have no idea how many I have. I have had them for as long as I remember. As I age though they are getting larger and more visible. After children I started to get them in the stomach area but the doctors won't touch them since they are so close to major organs. The ones that hurt the most are the ones that get in the way in everyday activity (arms, legs, and lower spine). Massages no longer feel amazing because pushing on them really hurt. I was thinking the next time I go to get a massage I might circle them. haha I feel your pain and frustration. I would love it if these trials work and they can somehow prove that these are a health risk and not just cosmetic. I am always in fear that I am going to look over a bump because I think it is just another lipoma. They tell me that lipomas and cancerous bumps feel different but honestly to me a bump is a bump and these can be very painful.

Re: Future Trials

PostPosted: Tue Aug 26, 2014 11:38 am
by BEN
Hello,
This world has entered in 21st century and i still wonder why its taking so long for the researcher to find a cure for human lipomas. I wish if the world can feel the pain of stress which i feel every day while looking to my old and new lipomas. My mother had them but only 3 or four and so do my siblings but out of the blue, i am the one in my family who has multiple lipomas. Initially removed 4 of them from my left arm which were size of lemons. Earlier, i used to count them and last time they were around 30 but now i just stopped counting them but they didn't stop in growing slowly and appearing new ones. I am single at the moment, my X girl friend always used to ask me if I find any cure for them. My many male and female friends who dont know about them get scared when they see lipomas on my arms though they are not too big but visible. Now I stopped wearing T-Shirts. I moved to US a year ago and asking every doctor in contact if medical science could find a cure for them but answer is "NONE". I want to get married and have children but i dont want my children to inherit this disease from me and i dont want my wife to be scared of them. At the end i would just say, i pray that some day some one find a cure for them and make our lives happy

Re: Future Trials

PostPosted: Sun Oct 05, 2014 2:42 pm
by sjg132
BEN wrote:I want to get married and have children but i dont want my children to inherit this disease from me and i dont want my wife to be scared of them. At the end i would just say, i pray that some day some one find a cure for them and make our lives happy


Ben,

This disease is genetic. I have it too, but very mildly. It also turns out that there are different chromosomes that carry the disease. I'm no geneticist, but it is most likely that your children will inherit the disease, and if not, carry it.

Sam

Re: Future Trials

PostPosted: Wed Oct 15, 2014 1:52 pm
by adelle25
I would like more information on how one gets in the trials