Dercum’s Disease: Let's create a support group

I was all set for this trial. (CBL-514) Had my paperwork in and e signed and was then told I was too old. That took all the wind out of my sails. I am starting all over again with another plan of attack but there is little else I can do. I wish you luck in your journey. This is such a frustrating disease due to the fact it is so unheard of and nobody I've seen seems to worry about it.

I just contacted Caliway biopharmaceuticals on 10/18/24 and they told me the fast track has been stalled while they do the clinical trials for phase 3 of CBL-514. I'm sorry for the news. Hopefully once the trials are completed it will get reinstated. I will do anything to help anyone to the degree I can. Hopefully we all have that as our goal on this support group.

Did they say why age mattered? Did they think you were going to pass away before the trial ended?

No, It is an age range and I was 5 years past it, 18 to 64 was the range. I guess they think I'm not worth the investment?

All I have ever heard is that removing Lipomas only causes more to come. I saw a video from Dr. Herbst where a patient had a lipoma removed and when they removed the bandage there were 4 more. I don't know about EDS so I'm not trying to steer you anywhere but ask questions if you decide.

One thing we can count on as we get older - the list ailments increases.

Boooooohisssssss
Researchers need to gather info on what we’ve been through and how our bodies work/respond as well. I’ll be 64 in March so I’m likely too old as well

You're not too old and I believe they are still recruiting. Please take a chance. I don't think I can send you a link on this forum but look up CBL-0202DD study. Caliway Biopharmeceuticals. It's pretty simple to submit. The actual search I used was CBL-514. If you search CBL-514 it will get you there. You have a choice of 2 locations. Spokane or St. Louis. You have nothing to lose. Go for it.

Good morning everyone my name is Douglas and I have been diagnosed with and living with an extremely severe and debilitating case of Dircums disease. Just yesterday after this long hard road of becoming my own advocate on this disease for myself because as we’ve all learned there is just not enough resources out there for Dircums which as a result has unfortunately caused me to go through nearly one full year now of back to back to back appointments with my PCP, & everyone in his department that he could refer me to (plastic surgeon, outpatient surgeon, dermatologist, physical therapy, dry needling massage, liposuction etc nearly 2 appointments per day per week since January 14th of this year which has given me little to no relief abd in fact it’s even made my condition/symptoms even worse and again it’s because we have nothing out there in terms of resources or help and until this morning I was not even aware that we had a support group like this which is outstanding! I have so much to say and I need all of your help if I’m going to have any chance at slowing the rapid growth of the hundreds of painful lipomas and Adipose Tissue that my body is rapidly producing this year vs prior years. I was admitted to the hospital back in October 12th all over me simply falling asleep in my car for a couple of hours only to wake up to the most severe pain I’ve ever experienced in the back left side of my left ankle! MRI revealed it to be Tenosynovitis which according to their notes means There is thickening and fluid surrounding the peroneal longus and brevis tendons throughout their course, especially the peroneal brevis tendon which makes absolutely no since when I was just sitting there and of course even though I was promises by the Director if imaging that they would take imaging of my left leg or at the very least my left hip so that we can get a better idea as to what caused my ankle to blow up and stay extremely swollen for over 2 weeks before they could finally discharge me! What’s also bad about not having imaging is the two weeks I was in the hospital they had me in Ketamine infusions for approximately 4-5 full days in a row as my Dr has undone that with my pain being so debilitating from how deep these things are growing into my muscles they are of course pressing extremely hard on my nerves and we had one extremely large group of smaller lipomas the size of marbles which all fused together to make one large lipoma located in my right lumbar region stretching from the right side of my abdomen around to my back and as far as the depth my Dr did tell me while he had me on the operating table attempting to remove it that it had grown through my fascia, was into my muscles and from there from my understanding without pre operative Magnetic imaging we won’t know the depth of this one but I can tell you from feel and the severe symptoms it’s been giving me for years now especially fighting against me when attempting to have a BM that this large mass of fused together lipomas go so deep into my side it feels like you could pick me up by it shd carry me around like a suitcase, that’s how deep I can feel it going and according to my dr who attempted to remove this one said a portion of my large intestines is directly behind the muscle that he could visually see this large mass growing into therefore my 2-3 weeks between BMs and how they are either tape like or liquid could be related.

I have so much to say & ask and I hope I’m in the right place. I am 43.5 about to turn 44 and I first started experiencing the more severe symptoms approximately 7 years ago when I was 37. I had hernia like symptoms which was quickly ruled out after paying out of pocket & driving over 5 hours round trip fir an affordable CT scan however I was still left with the painful and unpleasant hernia like symptoms that were only getting worse, it wasn’t until a few months more of dealing with this pain when I had a second opinion and found that I had lipomas in my pelvic floor that was causing the hernia like symptoms.

I am growing more and more concerned for my life and wether or not I will ever be able to live a normal life again free enough from this chronic debilitating pain that has now consumed every second of my day and night!

In addition to my DD I have also been diagnosed with having the following which my speacilist believe that these illnesses are all related and as a reaction to the DD.

Dercum disease
Fibromyalgia
Multiple lipomas
Neuropathy
Neural foraminal stenosis of lumbar spine
Degeneration of intervertebral disc of lumbar region with discogenic back pain and lower extremity pain
Lumbar radiculopathy
Hip dysplasia

Below I have begun to create a running list of questions that I have for our DD group here in hopes that one of you may be able to finally help provide some of the answers that I’ve long been after and to this day even with all of my drs assistance these questions still go unanswered and unfound online.

Where can I find the first and only FDA APPROVED drug for DD called CBL-514 which is an injectable that gets injected directly into the lipoma thus reducing its overall size releasing that pressure on your nerves and from invading further into areas they shouldn’t be in and the ultimate outcome from this newly FDA APPROVED DRUG FOR DERCUMS DISEASE. I attempted to include the site however this forum does not seem to allow for me to share any links (maybe it’s because I’m new to the group?)

Has anyone had a deep seated lipoma surgically removed that is no longer in between the skin and muscles and has grown into deep areas in your body? And what was the outcome?

Does anyone here suffer from Liposarcoma? (Non benign lipoma)

That is the only questions I can think of top my head as I have a lot going on today including another appointment with my Podiatrist in his ongoing attempt at easing all of the pain in my feet and ankles being caused by this disease.

If anyone who has read what I have posted thus far has any further advice or questions please don’t hesitate to reply and I would like to personally thank everyone on this DD forum who was involved or who had a hand in on speaking up for our illness and getting a forum together like this!

@madvzebra you are exactly correct in regards to having basic outpatient surgery where they cut you open and remove the lipoma you would like removed HOWEVER as @madvzebra said it provided little to know relief not because one grows back in its place but because there were dozens of additional lipomas plumed directly below and around the lipoma being surgically removed. I am a perfect example in just what NOT to do unfortunately SMH because of the lack of information out there for us and with even speacilist not knowing very much about our disease I literally learned months into following my primary care drs advice that I had to become my own advocate for my disease if I wanted to get the help I needed however prior to that I had one of my drs surgically remove a total of 9 lipomas (3 per hour long appointment) which has left scars all over my body when prior to this year I didn’t have a single scar on me and it was all for nothing because all 9 that I had removed there were dozens directly below them that just filled the newly emptied space! So the last time I went in to gave this procedure done which was in September of this year I had my Dr attempt to remove a fist size lipoma which was made up of dozens of marble size lipomas which had fused together in my lumbar region wrapping around from my abdomen to my back and causing pain, muscle cramps, gastrointestinal issues and major constipation issues as this one fights back against me when attempting to gage a BM and when he got in there and cut down as deep as he could go he said Doug this mass has grown through your fascia, it’s into your muscles and very possibly even pushing on a portion of my large intestines which happens to be directly behind the area that this large mass has grown into so he removed one marble size lipoma from the top more surface level, stitched me back up and sent me on my way because that’s all the further they can go when having lipomas removed surgically the way I’m explaining it. My dr did however had me go in for full magnetic imaging of my entire abdomen and back minus my spine since we already gave an MRI of my entire spine showing where the pressure from these lipomas and adipose tissue that I’m growing has literally pushed my hips forward giving me hip dysplasia and it’s cause led me to have severe back pain for the first time in my life which started back in May of this year. I can only stand for so long before my lats start to violently shake and my legs give out if I don’t sit down. This is because per my speacilist all of the bulging discs and lipomas in my spine and they confirmed that all of my muscles throughout my entire body including most of my nerves are all deeply encased in the Adipose tissue that I’ve been growing for multiple years now burrowing them deeper abd deeper down into this adipose tissue which is much harder than skin therefore it was confirmed that all of muscles are all being severely pressed on harder and harder with every passing day from the slow growth of these things my muscles are AT FULL FLEX so just as a body builder in the Olympics would do squats and when he or she goes down into the squat position their muscles take on the full load which has them all at full flex before the body builder then stages back up straight and completes the rep thus allowing he or she to rest their muscles abc nerves HOWEVER in my situation my muscles have been at full flex for years now and it’s so bad that anytime my adrenaline starts to flow gif wherever reason especially in a fight or flight situation anytime I have found myself in those situations this year the second my adrenaline begins to flow my lattes violently shake and my legs automatically just give out causing me to just crumble down to the ground it doesn’t matter where I’m at I can’t control it and it really has me worried along with multiple other symptoms that I’m experiencing so anyone out there who happens to read some of my story and has advice for me I would love to have it.