I went up to Stanford on Jan. 8-9th, 2018 for my measurements appointment and lymphoscintigraphy after taking the Ubenimex or placebo for 6 months. My skin thickness and leg measurements improved during the trial. Also the lymphoscintigraphy showed that my lymphatics improved. Dr. Rockson, his team, me and my husband Steve all think I was on the drug (it is a double blind study so no one knows for sure.) So I feel better, and I am glad that I could do the study even though I had already had SAPL surgeries for each leg and was better off than most that have this awful lymphedema. I have been off the drug since Jan. 8th and so far feel the same. I don't feel cured, but I do feel better and I don't think the compression garments are working as hard as they did before. I don't sleep in any compression and I don't get in them until after I jump in my swim spa in the morning for some pool therapy. I go back next Wed. for follow up and will give you guys a new post then. Good luck and hopefully Dr. Rockson and others searching for a cure and better therapies for us will continue to fight for us!
So after four weeks of taking either the placebo or the Ubenimex, I am pretty sure I am getting the study drug for Stanford's latest lymphedema research. My leg measurements all decreased as did the thickness of my skin. I had some fibrotic tissue in my left foot from a minor wound after 2015 SAPL surgery. That foot is getting softer and the skin thickness measurements showed improvement in both legs. My husband Steve also agrees that my left foot feels much better. The earlier research on the rodents all showed improvement, and what is important is the residual effect was good. The study results showed less swelling and better skin condition, and the good results did not go away after they took the rats off the drug. Good to know as this drug won't be approved until 2020 or so. So hopefully when I finish the drug trial in Jan. 2018 I will have had improvement in swelling and skin condition from it and this drug will get approved for the many that could benefit from it. The links to the trial and the drug study info are in the previous blog post.
I jumped through the four screening hoops and just started either the drug or the placebo for the Ubenimex drug trial at Standford. Info on the trial is at https://clinicaltrials.gov/ct2/show/NCT02700529 . First hoop was the blood test and visit with Dr. Stanley Rockson of Stanford. Then I had the Lymphoscintigraphy test for the second visit. They inject dye between the toes on both feet and make sure your lymph system isn't moving the dye. It is a barbaric test but it only hurts for 10 seconds when the doctor injects the dye between the toes. Two injections per foot. Yowser. Third visit was measuring the legs and a bioempediance test to determine the severity of the fluid component of lymphedema. Fourth visit if the measurements stayed the same meant I got in the trial and the computer picked whether I get the drug or the placebo. 5 capsules 150mg three times a day for a daily dosage of 450 mg/day. So I got through all the screening and now started with the drug. Next visit is Aug. 1, with several more trips back to Stanford between now and Jan. 2018. Hope the trial is a success and that this new drug is available and helpful to all lymphedema patients.
Here's a link to how Stanford thinks Ubemimex will help us https://med.stanford.edu/news/all-news/2017/05/study-finds-first-possible-drug-treatment-for-lymphedema.html
I just reported fraud, waste and abuse to Navex Global for HealthNet's payment to Scope Orthotics' April 2016 invoice for my medical lymphedema compression garments. Scope billed HealthNet $8,347.52 and HealthNet just paid them $4,507.66 after several denials, and we paid the $400 co-pay. HealthNet denied my Oct. 2015 claim for $1,800 for the same garments that I got after my out of pocket lymphedema surgery thanks to all my friends help. The garments all come from the same manufacturer and need to be replaced every 6 months. They denied my Oct. 2015 claim since I didn't go through my primary care physician and the vendor that they want me to use. So they are willing to pay $4,500 and not $1,800? Sounds like fraud, waste, and abuse to me and the system is rigged against the patients.
I am doing well after my surgery. I swim every day and my leg measurements were great in April were left leg: 6,593 ml and right leg 7,026. Before I had my two surgeries they measured 8,783 and 10,153. I am very glad to have had the two SAPL surgeries with Dr. Granzow in 2014 and 2015. I requested lymph node transfer surgeries but of course I was denied by HealthNet. They also turned down my claim for my current compression garments even though CA state law says they must pay for it.
I am super stoked to be on the other side of my Suction Assisted Protein Lipectomy by Dr. Jay Granzow. He removed about a gallon of lymphedema sludge out of my left leg and lower abdomen. Surgery was Oct. 21 Wednesday morning around 8:30. I was in my hospital room about 3 pm after a couple of hours of recovery. My leg is all bandaged up and looks smaller even with the bandages on it. I can get up and walk to the bathroom and get my computer out of my backpack. Tomorrow (Thurs.) likely around noon we are going to check out and go to the hotel. Fri. Julie the physical therapist will check my leg and put on two compression garments on my right leg. Class 3 and a Class 2 on top. It won't be pleasant but after I heal up I will be doing great. I have a Theraplate to help with the healing and in 6 weeks I will get back in the swim spa I found on Craigslist last year. My right leg is even smaller since I am doing those two therapies and watching my calorie intake. I thank everyone that donated to my GoFundme site and helped Steve and I pay for this life changing surgery. It is too bad that most insurance companies won't help lymphedema patients and I urge you to send a letter via the www.LymphedemaTreatmentAct.org to help get congressmen to support this important bill. To find out about Dr. Granzow visit www.LymphedemaSurgeon.com
I went to see Dr. Granzow on July 7, 2015, in Los Angeles to see about getting on the schedule to get suction assisted protein lipectomy surgery for my left leg. My right leg is doing well since last July's surgery. My friend Nancy Reed started off the donations with a huge donation to get the surgery done and I am looking for $20,000 more to get it done. Dr. Granzow is super happy with my right leg. I swim every day in my craigslist swimspa, hit the TheraPlate for 15 minutes every morning and try to ride or do some activity at the barn. Looking forward to getting this sludge out of my leg. If you want to donate here's the link to my GoFundMe – http://www.gofundme.com/8ewey0 for more info on Dr. Granzow - www.LymphedemaSurgeon.com
Looks like progress is being made in lymphedema research. Hopefully current sufferers may see this in our lifetime but if not hopefully in future generations. Science Daily reports – Resolving a lymphatic riddle: Researchers to grow, for the first time, lymphatic cells in the lab
So now that it has been 9 months past the surgery I'm doing pretty good with the right leg that had the suction-assisted protein lipectomy surgery. The recovery was pretty gnarly having to have my awesome husband Steve put on the double layered compression on my super sore leg for weeks before I could do it my self. I had pins and needles nerve pain in my leg for months that has finally gone away. So if I had the money I would fix my left leg which is getting worse from lymphedema. Thanks for all of you that have checked in with me to decide if you want to have Dr. Granzow help you. It is too bad that health insurance who caused my lymphedema won't help to fix it. Hopefully future generations will change how we are treated. Happy Lymphedema Awareness Month!
Aug. 13, 2014 will mark three weeks after my liposuction surgery to remove 4.3 liters of lymphedema sludge out of my leg. I woke up out of surgery fine and my physical therapist Julie had my right leg bandaged. I could get out of bed and use the bathroom. Yeah!! That is always the trick after coming out of anesthesia. The surgery went well according to Dr. Granzow. The second night the bandage really irritated the top of my right foot and I would get up every hour to walk around to relieve the pressure. The first two weeks were pretty rough as I was super sore and had to be bandaged to keep the leg from swelling. I got my new compression garments - $1,800 - hopefully to be paid for by insurance (submitted the claim but haven't heard if HealthNet is going to pay up). I have a left leg thigh high (I have lymphedema also in that leg). Plus two thigh highs for the right leg. I wear the number 3 and the number 2 on my right leg – taking the top number 2 garment off at night. Plus I have the biker shorts. My right leg is a lot smaller than before the surgery and even smaller than the left leg which has lymphedema but not as bad as my right leg was before surgery. Lucky for me, my husband Steve is helping me get the right leg compression garments on. They are super tight. I even need Steve to take off the right leg garments. This past week I have been able to get the top right garment off at the end of the day. The left leg is easy for me to take on and off. Putting the right leg garments on and off the first two weeks were pretty rough as my leg is super sore from the surgery.
I will be seeing Julie the PT on Wed. to see how it all looks. I met with the Dr. Granzow the first week after and he was very happy with how my leg looks. I tried to do to much 10 days after. I went to the barn to teach a lesson, off to the office 90 miles north, lunch with friends and then home. Not good - leg was super throbbing from being in the car and not elevated. Julie said it really takes 6-8 weeks to feel better. The last two days I have been doing a pretty busy out and about schedule. I taught a couple of lessons (even rode one of the horses for 2 minutes. Yesterday I coached a rider at a local show in 90 degree heat and did pretty good. I can't walk too fast and I can't bend my right knee completely with the two compression garments on it. My right foot is pretty swollen by night time and I have open toe thigh highs. Last night Steve wrapped my foot over the compression garment and that felt a lot better.
The compression garments will need to be replaced in 3 months. So I'm not sure if I can get insurance to pay for next set in only 3 months. Will see. The next step is either to do liposuction on my left leg or do the lymph node transfer. That will be another $40K plus or minus per surgery so lots of money and lots to think about. I was lucky that my friends donated over $24K through my go fund me website for the first surgery and really helped us out. Hopefully those of us that try these surgical procedures will help get the ball rolling for better support / coverage from the health insurance industry. Everyone I tell my story to can't believe that health insurance doesn't cover any of this.
Dr. Granzow took out 4.3 liters of lymph sludge out of my right leg. I'm checking out of Providence Little Company of Mary Medical Center in Torrance, CA tomorrow. Will post more later.
I am looking forward to my surgery on Wed. the 23rd of July. Dr. Granzow will be liposuctioning the lymph protein solids out of my right leg. I did my EKG and blood work and I am all ready to go. My husband Steve will take me up to Providence Little Company of Mary Medical Center in Torrance on Wed. morning. Surgery will be 4 hours starting at 11am. I stay over two nights. My lymphedema therapist will measure my leg and order my new compression stocking but I will be in bandages until they come to keep my legs from swelling. I'm getting excited and will really be looking forward to the Lymph Node Transfer surgery 8-12 months after this surgery.
I just found out via the Lymphedema Guru on Facebook that California requires health insurance companies to pay for lymphedema wraps and garments. So my job today will be to call them and find out if they will now help me!!
I posted on my Facebook page: Looks like California health insurance companies have to pay for compression garments for lymphedema patients as of July 2013. Thank you Lymphedema Guru for sharing that info - now I get to educate my health insurance company - wonder if they will reimburse me for my $900 jobst custom panty hose I paid for last Dec. - be better if they paid for my surgeries and help me get rid of this expense - $1800/year for Jobst to wear every day and $3,600 / year for CircAid to sleep in every night to prevent me from swelling up like a fat tick / getting cellulitis and other medically expensive stuff - wish me luck!!!
Only 26 days to go for my first surgery. I’m getting excited!!
A good source for lymphedema sufferers: www.lymphactivist.org
The link for the news about California: http://www.lymphactivist.org/efficacy_of_cdt.php
Also share the Lymphedema Treatment Act with your congressman: http://lymphedematreatmentact.org
If you want to help me here’s my gofundme site: http://www.gofundme.com/8ewey0
Cheryl Erpelding beat uterine cancer in 2010, but was stricken a year later with a major complication after her surgery – secondary lymphedema. Lymphedema can occur years after cancer surgery involving lymph node dissection. Lymphedema is a chronic lifelong condition in which excess lymph fluid collects in tissues causing swelling which can be very debilitating.
Cheryl founded San Diego County Riding Magazine in 1986 and grew her start-up into a million dollar publishing company – Riding’s Publications. Last year Cheryl sold her company to MPM Publications and remains on the team as the sales manager. She continues to help write articles, shoot photos and video, and helps with the layout of the monthly California Riding Magazine and the annual California Horseman’s Directory. She currently also is the sales manager for the nationwide and growing Horse Advertising Network.
Although Cheryl has health insurance through her husband’s employment with AT&T, her medical costs from lymphedema are not covered. Currently Cheryl needs to wear a custom compression pantyhose-type garment every day to keep her legs from swelling and sleep in a CircAid compression wraps at night. These garments need to be replaced every 6 months and cost $2,700.
Always a lover of puzzles and a fanatic problem solver, Cheryl has been on the quest to fix her broken lymphatic system. In her research she found several doctors who are performing surgeries that will fix lymphedema. She has met with Dr. Jay Granzow in Los Angeles and is going to have two surgeries to restore her lymphatic function. The first surgery will remove the lymph protein solids in her right leg. The second surgery, about 12 months later, will transfer a lymph node from her under arm to her groin area to restore lymphatic function in her body.
Of course, these surgeries are also not covered by heath insurance and Cheryl has established a gofundme website http://www.gofundme.com/8ewey0. As of mid-June she has raised $19,000 towards the first surgery and is hoping to reach $35,000 from her supporters to add to her and her husband’s $15,000 to pay for the first surgery.
One of her longtime dressage trainer friends, Elizabeth Johnson is hosting a benefit clinic June 21, 2014, which along with some silent auction items is expected to raise another $1,000. Cheryl thanks all of her contributors and if her friends cannot help out financially they are welcome to help by sending the Lymphedema Treatment Act information to their congressman to help her change the way the health insurance industry treats lymphedema sufferers. http://lymphedematreatmentact.org
Cheryl is on a mission to help herself get better and also improve the health care for lymphedema sufferers everywhere. She is blogging about her experiences – www.LymphedemaSucks.com
I am working at the Western States Horse Expo and met Liz Helms CEO of Calif. Chronic Care Coalition. She wants to help me get help from my insurance for my secondary lymphedema needs. Already I have raised $18K for my first surgery! Check out her company at www.chroniccareca.org
On her home page her headline states: 75 cents of every health care dollar is being spent on chronic conditions "unnecessarily." It's time for that to change!!
Thank you Liz and Elizabeth McCall for the introduction! Hoping to help myself and many others with lymphedema.
Going to get approval from the cardiologist for surgery on July 24th.
1st surgery is SUCTION-ASSISTED PROTEIN LIPECTOMY - http://www.lymphedemasurgeon.com/lymphedema-procedures-los-angeles/liposuction/
I sent my first $10,000 - sending the second $10,000 tonight!
I just got this from the Lymphedema Treatment Act - The LTA was recently endorsed by the American Academy of Physical Medicine and Rehabilitation!
This is an important milestone for us because it is the first physicians group to join our list of supporting organizations.
So not sure why I got the dealt the card that said, "You get lymphedema after hysterectomy for uterine cancer." Maybe God wants me to change the health insurance industry. The health industry caused my lymphedema and now they don't want to help me or the 3 million others that get it - either after prostrate, breast or cancer surgeries or born with it – we are out in the cold. Most insurance companies don't even pay for the exhorbitant compression garments we are destined to wear. But there are microsurgeries available to help those of us with this terrible condition and I am determined to get fixed.
I received this email today – hopefully California is next:
Last week Louisiana passed a state lymphedema treatment mandate!
Like the North Carolina and Virginia mandates already in effect, this law will require that all private insurance policies sold in that state cover compression supplies. The Louisiana bill was passed unanimously by both its state House and Senate, and now all that remains is for the bill to be signed into law by the Governor. I’ll be in touch with more details when that occurs.
How did this happen? It’s all thanks to one amazing advocate on our Louisiana State Team.
She made change happen and so can you!
We need your help to pass the Lymphedema Treatment Act so that patients everywhere, including Medicare beneficiaries who can’t be helped by state mandates, have coverage for their compression supplies. If your Representative is not yet amongst our cosponsors, please continue to contact his or her office.
I urge you to call your Rep’s DC office, this week, and speak to the Health Aide. When you do, ask for his or her direct email address so that you can send this information about the bill. A link to look up the phone number, as well as lots of helpful tips on what to say and what questions to expect, can be found in our Advocacy Handbook.
I can’t stress enough the importance of you making this phone call. Personal contact is the key. We need your Rep as a cosponsor and you have the power to make that happen.
Thank you in advance and Happy Memorial Day!
Founder and Executive Director
Lymphedema Advocacy Group