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Marlana
06-30-2004, 07:07 AM
I am not sure if I am allowed to do this but if I am not, then I apologize. Here is some info I found on the urolgoical conference they recently had. It may be repetitive of what is in the Optimist but here we go. THis is for those grasping at straws like me.
Researchers Now Know What APF Is

Susan Keay, MD, PhD, of the University of Maryland, Baltimore, and her colleagues have found out exactly what antiproliferative factor (APF) is—the substance made in the bladder lining cells and secreted into the urine in IC patients but not in healthy people. APF could actually be a cause of IC because it puts the brakes on the growth of the bladder lining.

APF is a sialoglycopeptide, which means it’s a small protein, that has three sugars attached. The protein part of APF turns out to be identical to a portion of a much larger human protein, called "frizzled 8." It’s one of a group of recently discovered proteins, called "frizzled" proteins, that seem to be very important in the development of cells of the nervous system and of epithelium—skin and the linings of organs, such as the bladder. Interestingly, these proteins are usually made during development of the embryo and not very much during adulthood.

APF is also the first known of the peptides from secreted frizzled proteins that contains the part of the protein that’s able to go through the cells’ membranes (lining) and it is also the first one known that appears to control the growth of the cells it comes from. "So this may help us to understand yet another way that segments of these frizzled-related proteins play a role in the development of both neurologic and epithelial cells," said Dr. Keay.

It could be that frizzled 8 is important in bladder cell development, and it doesn’t get switched off in IC patients. Another possibility is that it is usually never made in normal bladder cells and there’s something, either outside or inside the cells, that kicks frizzled 8 and APF into production.

Now that Dr. Keay and her team know exactly what APF is and can produce it in the lab, they are going to take the next steps to try to make a practical test for IC. The way she and her colleagues detect APF now is difficult and labor-intensive, but detection could be easier once the researchers can make antibodies that react to APF. "We are in the process of making those antibodies and determining the feasibility and how sensitive that assay will be. But we also are in the process of looking for an industrial partner who can help us with development of that type of assay."

There is a growth factor that counteracts the effects of APF, at least in the lab, called heparin-binding growth factor-like growth factor (HB-EGF) that could become a basis for a drug. Also, if she and her colleagues get clues as to what regulates APF production in cells, they may be able to find a way to stop it, such as through gene therapy.

APF, as a strong inhibitor of bladder lining cell growth, also stops the growth of at least one type of bladder cancer cell in the lab, and APF itself, a bad actor in IC patients, might hold a key to treatment of bladder cancer, where the cells grow out of control. Whether this means that IC patients aren’t likely to get bladder cancer, we don’t know.

ICLori
06-30-2004, 07:23 AM
Thank you so much for this article, Marlana, it's great! I really enjoyed reading it and it lifted my hopes. Thank you so much for posting it here.

I needed a lift today - having a bad flare day. I was so hoping my flare was behind me, but it looks like it's here again. So I'm having kind of a bad day, wondering if my flare will ever go away.
Spent all this morning in bed feeling sorry for myself with a hot water bottle on my bladder and going potty every fifteen minutes. Drinking water, too, but still bladder pain in spite of drinking lots of water.

Blessings, Lori

Marlana
06-30-2004, 07:26 AM
Lori
I am so sorry. When is your apptmnt at the pain clinic. I sure hope soon. I was praying that flare was history too. I will be thinking about you. i was just saying to DIxie that it is nice to see soemtimes a little ray of hope on this IC. THat article does sound promising and I am sure there is more we do not know. In the meantime. pamper yourself and take care. I will be praying for you.:thumbsup: :angel: :dogrun:

ICLori
06-30-2004, 07:40 AM
Thank you so much, Marlana. My pain clinic appointment isn't until 27 July which seems like a lifetime away. I hope they treat IC patients and I hope they will help me.

I decided to just get up and get around, do some stuff around the house, go to the computer, because I was tired of laying around in bed. When I'm like this I'm just chasing after sleep, really, because I don't get more than 15 minutes at a time of sleep and not good quality sleep. So I spend a lot of time in bed trying to get fifteen minutes here or there.

I think this could be livable if I just had adequate pain relief but it's really hard when you don't. I have so few pills left that I'm scared to use them freely now, in case the pain gets worse later.

How are you feeling today? I hope you are okay, hope you aren't having that "gotta go" feeling all the time.

Blessings, Lori

ChrissyH
06-30-2004, 09:43 AM
Thanks Marlana for posting this. This makes me think that maybe there is hope that a new and better drug (maybe even a cure) is possible in our lifetime.

Marlana
06-30-2004, 09:52 AM
Yes, as I have said. Someitmes it is nice to see something in the works for us. It may not be for awhile, but someone is trying. Jill, if you are out there, what are your thoughts on any new treatments in the future..we will take a treatment that works and then hope for the cure. I read alot of urologists input and transcripsts on the boards and many feel there can be a break through in as little as 5 years. I hope this is true..

sleepyangel30
06-30-2004, 10:08 AM
There could be a cure sooner than we think who knows:)

darlene
06-30-2004, 08:21 PM
Thanks, marlana for the report. It's great to know that researchers have stopped believing our symptoms are all in our heads, and are looking for the real cause of IC. I hope they make quick progress in developing new, effective treatments.

lotsofgirls
07-01-2004, 03:11 AM
:thumbsup:

Sharon
07-01-2004, 03:48 AM
Very interesting article, thanks for posting it. :)

donutgirl
07-16-2004, 09:12 AM
I am actually participating in the study the Univ. of Maryland is doing on recently diagnosed IC patients. Everyone I have spoken to there has been so kind and understanding and did say that they hope to learn alot about the things in the article Marlena posted....particularly an identifier in our urine that non-ICers don't have. I actually had to send a urine sample Fedex from NC to MD...LOL...I would send 100 if it would help us. Not sure how many are in the study, but I did a 1-1/2 hr phone interview and they have ordered my medical records. I am now a number to them. :D I'm just hoping all of us improve to No. 1 soon. Have a great w/e everyone.

:kiss:
DIANE

Marlana
07-16-2004, 09:42 AM
According to what I read, they really feel that they found out what one cause of Ic is and that they found something to stop it in the labs. They just need a partner to develop a drug in the labs which can take forever sometimes with the fda and all. But this is a true milestone..

VickiB
07-16-2004, 02:44 PM
Thanks for posting this, Marlana. I like to come here and read some good, hopeful news! I suppose it's in part because we hear so little about IC out in the world, that most times I feel like there's no-one out there working on it! Like we who suffer with it are just plain too few in number to justify spending time and money on the research. I'm glad to be wrong about that, and am very hopeful that the key to this will be found.

Vicki

ICLori
07-16-2004, 11:31 PM
Hi, Vicki, believe it or not we aren't too few in number....

Recent studies have shown that 80% of women complaining of pelvic pain to gyns have IC.

And 20% of the female population in general has some form of IC, whether mild or severe.

Hopefully now that the extent of IC is known (20% of the general female population) there will be even more money devoted to IC and a good effective treatment or even a cure will be forthcoming.

Blessings, Lori

jen_dahling
07-17-2004, 05:40 AM
Very interesting! I am printing this out right now and bringing it in with the info. that Angela posted. Anyone think there is a connection?
Jen
:hi:

ICLori
07-17-2004, 06:29 AM
Yes, Jen, I wonder that myself!!

Blessings, Lori

VickiB
07-18-2004, 08:56 AM
Lori, I've read about some of the studies which say a larger number of women than previously thought may actually have IC. Having had these symptoms for at least twenty years prior to diagnosis, I do believe there has to be a significant number of people out there going undiagnosed still. Especially when you factor in those who have less access to medical care because of income, medical sevices readily available, etc.

My feelings of being so few definitely come from personal experience. Twenty-some years of sitting across from physicians who've sent me home with the reassurement there's nothing wrong with me after I related classic IC symptoms to them. In all that time I've never personally run across anyone else who said they had the same problems. -Not until finding this site. (granted, I don't bring up my bladder, out of the blue, as a topic of discussion!) Nor when the subject has come up, has anyone ever said they'd heard of IC, or even know of anyone else to have these same symptoms.

But, as awful as this sounds, I'd be very happy if a large percentage of people were suffering from ths disease. Because then, surely, we'd see more emphasis put on diagnosis, treatments, and funding of research! Like I said before, I'm more than happy to be wrong in my feelings of being so alone!

Vicki

mayray518
07-18-2004, 09:19 AM
I am also printing your post. I have met both Dr. Warren and Dr. Keay (since I live in Maryland) I am excited about this development. They are both excellent, caring doctors. I was in a trial study and the protein was found in my urine. I believe this could be an indication of IC and a great discovery.

blue
07-18-2004, 08:44 PM
Did they say what they thought the cause was?

lulu5
07-19-2004, 04:23 AM
Just wanted to say thanks again Marlana! I love reading about promising new breakthroughs! It gives me hope. My uro is working with Dr. Buffington (who studies cat bladders), and I will hopefully be one who has their adrenal glands scanned at OSU when they are ready. Thanks again!!

BethW
07-26-2004, 12:12 PM
thanks for sharing the article. I really needed some hope today. Beth