PSC partners funding for CCA research

[Guest guest]

The loss of Joe and Mark within weeks of each other, as well as

Quinn and unfortunately many others, sadly illustrates that

cholangiocarcinoma is one of the most frightening aspects of this

disease, and a fear that we all share. It is otherwise a rare cancer,

meaning that there isn't much research focus or funding. It is an

insidious cancer, in that it may grow for some time before it is

detected. The existing cancer markers and imaging techniques are not

reliable in detecting it early enough to qualify for the Mayo clinic's

chemo and transplant protocol. My gastroenterologist has said it is

most often detected in patients with advanced disease- my

interpretation is that this is when the physicians look the hardest,

sometimes at the point of transplant.

I'd like to propose that one of our scientific focuses could be on

funding research on methods for early detection of CCA, particularly

in PSC patients where inflammation can confound the interpretation of

CA19-9 levels. I will not be able to attend the conference, but would

like to suggest that our scientific board consider this topic for a

future research focus if funds allow us to expand from our current

levels, as well as to suggest it to the Foundation?

Martha (MA)

UC 1979, PSC, 1992

[Guest guest]

-----Original

Message-----

I'd like to propose that one of our scientific focuses could be

on funding research

on methods for early detection of CCA, as well as to suggest it to the

Foundation?

The Foundation

is funding research in this area.

One of my biggest concerns

(among many) is the number of people who have PSC who are never informed of all

the facts. We hear it time after

time – “the doc said; you have PSC and will need a transplant, but that’s

all he told me”.

“IF”

someone knows the whys and how’s of PSC, they can keep an eye open, be

aware of all the pit falls and stay on top of their health as best they can. They at least have a

fighting chance. After

last years Conference, some people said, “they talked too much about

cancer” or “we really felt depressed after hearing them talk about

cancer so much”. Even now, there are people who don’t

want to talk about cancer, death or rPSC, they don’t

even want to read or think about anything bad happening. They say “we know the risks, why

talk about it”? Why? Because we owe it to those who have

passed from this awful disease, to do everything in our power to stop it! We owe it to them to reach out to

everyone who has PSC and inform them of the risks. To let them know they aren’t

alone, that we are here and will fight along side of them. We need to tell the world about PSC- Partners,

http://www.pscpartners.org the

Foundation http://www.pscfoundation.org/

and our partner in the UK PSC Support ( http://www..demon.co.uk/

) so people can have total access to all the latest information.

Have you made a

contribution to PSC Partners? Why

not? A few years ago I asked

everyone to send in a dollar – thinking that if everyone did, we have a

tidy sum (we have over a thousand members!) People posted that it wasn’t right

for me to say that, I didn’t know how poor people might be. So get

ready to be mad at me again!

If you haven’t

made a contribution to PSC Partners, do it now! There are no more excuses like, “are

they for real”, “what will my money be spent

on” “how can I trust them”. I understand not everyone can do the “walk”, or has a bunch to send in, I know that, we’re

all in the same medical expense boat.

But….can you send in a dollar? Maybe a dollar a month?

EVERY little bit you can send in helps

and clearly says – NO MORE, YOU AREN’T TAKING ONE MORE MEMBER OF

THIS GROUP OR ONE MORE PERSON WITH PSC!

Please make a donation

now:

PSC

Partners Seeking a Cure

5237 So. Kenton Way

Englewood, CO 80111

Thanks for letting me

rant, sorry this is long, I know we’re all hurting.

TOGETHER IN THE FIGHT,

WHATEVER IT TAKES.

[Guest guest]

AMEN

BARB!!! Your post made me angry at PSC not you. How can we just sit

back and wait for someone to take an interest…we need to be the loud

voices and show we mean business. I think about how much money is raised

for breast cancer, autism, etc. and think if we ALL who are affected in some

way to PSC would just do something (it doesn’t have to be big or costly)

to raise awareness to this dreadful disease, then one day we won’t have

to hear “PSC…what is that?” I know the numbers aren’t

the same as those diseases, but if we ALL fight…mothers, fathers,

sisters, brothers, aunts, uncles, and all the rest…WE CAN BE HEARD!

Thank you for your post…I think it

is great to get angry at PSC and want to fight it with all we have!

Together in the fight…Whatever it

takes!!!

Joanne (mom of Todd, 21, PSC 01, Crohns 02,

Tx twice 03, rPSC 05, Type 1 Diabetes 06, and living life to the fullest with

itching 07)

[Guest guest]

Barb,

Just this morning I was emailing Joanne to see if we should let the

group know that they can help by contributing to

our Virtual Walk even if they are not walking.

I'm walking , Ricky, Joanne H.. Joanne G., Deb, Tim , Reggie,

are a few of the members that could add your name to their shirt for

any amount.

Or as Barb said , just send it to Partners as part of our March

fundraiser.

It is better for a lot of people to do some than for a few to do a lot.

Any contribution is a strike at PSC.

We are stepping in the right direction, we are starting to get

attention.

Keep yelling.

Thanks Barb,

Lee

[Guest guest]

Martha,

Your suggestion for another focus for PSC Partners' support of future

research is an excellent one. I'll pass this on to the Scientific Medical

Advisory Committee for consideration. Keep the ideas coming!

Ricky

PSC partners funding for CCA research

> The loss of Joe and Mark within weeks of each other, as well as

> Quinn and unfortunately many others, sadly illustrates that

> cholangiocarcinoma is one of the most frightening aspects of this

> disease> I'd like to propose that one of our scientific focuses could be

> on

> funding research on methods for early detection of CCA, particularly

> in PSC patients where inflammation can confound the interpretation of

> CA19-9 levels. I will not be able to attend the conference, but would

> like to suggest that our scientific board consider this topic for a

> future research focus if funds allow us to expand from our current

> levels, as well as to suggest it to the Foundation?

>

> Martha (MA)

> UC 1979, PSC, 1992

>

>

>

>

>

[Guest guest]

Hi Martha;

As I understand it, one of the main objectives of the STOPSC registry

(funded by the Foundation, and recently by PSC Partners

Seeking a Cure) is: " To identify risk factors and biomarkers for the

development of cholangiocarcinoma. "

https://web.emmes.com/study/psc/about/about.html

The last time I talked with Dr. Dennis Black he was planning to

prepare an NIH proposal to try to get funding for STOPSC from

the " NIH - Development of Disease Biomarkers " program:

http://grants.nih.gov/grants/guide/pa-files/PA-05-098.html

specifically in order to identify more reliable biomarkers for early

detection of cholangiocarcinoma in PSC.

I don't know whether this grant proposal was successful. I sincerely

hope that it was funded, and that this will propel the CCA research

forward. Certainly this topic is of major interest to the

Foundation and STOPSC.

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

> I'd like to propose that one of our scientific focuses could be on

funding research on methods for early detection of CCA, particularly

in PSC patients where inflammation can confound the interpretation

of CA19-9 levels. I will not be able to attend the conference, but

would like to suggest that our scientific board consider this topic

for a future research focus if funds allow us to expand from our

current levels, as well as to suggest it to the Foundation?

[Guest guest]

,

Thanks for directing us to the STOPSC registry website. Could you

explain a bit more about how it works to support research beyond

collecting data on patients?

I noticed they didn't have your PSC literature website on the links

page. This type of focused website could be useful to researchers in a

different way than a PubMed search is.

Martha (MA)

> Hi Martha;

>

> As I understand it, one of the main objectives of the STOPSC registry

> (funded by the Foundation, and recently by PSC Partners

> Seeking a Cure) is: " To identify risk factors and biomarkers for the

> development of cholangiocarcinoma. "

[Guest guest]

I have to agree that cancer is the dreaded gremlin that no one wants to talk about but as I have found out the hard way it is definitely the issue that needs addressing. After my husband died and I prepared for his memorial service, I was looking for more information to have on PSC to raise the awareness among my circle of friends. In trying to describe the disease in a way that the layman might understand I would talk about Walter Payton the football player and his announcement of having PSC and needing a liver transplant but dying of cancer before that occurred. When he first made his announcement my husband and I both thought, great now someone famous can finally bring this disease into the limelight much like Fox has done for Parkinsons. That didn't happen and even more disappointing to me now is that if you go to Walter Paytons website there is barely even a mention of PSC, his foundation has

been set up for cancer research. Yes cancer killed him but it most assuredly was a result of the PSC much like my husbands. The biggest thing I want to say to all of you out there still fighting this disease is fight!!! In that I mean don't let your drs become so focused on the liver and transplantation that they lose sight of the whole patient. This is what I feel was the final undoing for my husband and I am kicking myself now for not listening to my inner voice and his inner voice that kept telling us there was more going on in his body than his liver not draining properly and we didn't speak up more. I know nothing can be done for him now by looking back and saying maybe we should have done this or that but I am saying it to everyone here now to hopefully keep you or your loved one from going through the months of misery that we did. My husband in how horrible he felt, how hopeless he felt, how upset he

was at what he was putting me through. He was in pain and he was worried about what a burden to me he had become. That all my time was being taken up caring for him that I barely had time for our daughter. Back in January after he came out of ICU if the big picture would have been looked at there and we would have known then that he had cancer and not transplantable then certainly the time that he did have left could have been spent in a much better way than feeling like you were someones science experiment. This is also the reason that I donated his body in the hopes that not another person would have to go through what he went through. Ok I've vented enough. This has not been one of my better days as I have missed him so very much. Though my husband is gone his disease will forever be a part of my life and I keep my fingers crossed that neither of our children will develop it

either. Hettinger

Sucker-punch spam with award-winning protection. Try the free Yahoo! Mail Beta.

[Guest guest]

>

> I have to agree that cancer is the dreaded gremlin that no one wants

to talk about but as I have found out the hard way it is definitely

the issue that needs addressing.

> The biggest thing I want to say to all of you out there still

fighting this disease is fight!!!

....I am kicking myself now for not listening to my inner voice...

> Hettinger

-

Thank you SO MUCH for continuing to speak up and encourage each of us

to fight PSC and the misery that the disease can cause. Your entire

post included so many important issues - PSC, cholangiocarcinoma,

transplant, and the pain and suffering that accompanies the symptoms

PSC causes.

Thank you for your strength as you are in the midst of your own grief

and loss. I am so sorry that today was a really difficult day. As

many others have said in much better words than I, you are truly in

our thoughts. I wish words could take away or soften those really bad

times. I wish there was a way that when someone hurts so bad, we

could send a powerful hug your way, just to be there with you.

One last request; if possible, please try to not berate yourself for

things you wish could have been handled differently. In the midst of

serious illness, you and your husband were doing every thing you

possibly could at the time. Even as you wish you had done more or

differently, if possible, remind yourself that you did the very best

you could at that time. And remember you did everything with love and

his best interests as the focus of your decisions.

Take care.

Joanne

(, Ca; mom of , 16, PSC/UC 2-06; JRA 1998)

[Guest guest]

I KNOW HOW YOU FEEL. WHAT IS PSC FOLKS ASK? I WOULD SAY WALTER PAYTON DIED OF IT.. FOLKS WOULD SAY I THOUGHT IT WAS CANCER... AND WHEN I HEARD HIS WIFE TALK ABOUT WALTERS FOUNDATION THOUGHT GREAT ITS WILL HELP US FOR PSC RESEARCH...NO IT WAS FOR CANCER..PLEASE NOBODY GET ME WRONG CANCER IS A (______) DISEASE AND THEY TO NEED HELP...BUT PSC NEEDS SO MUCH RESEARCH DONE. JEANNE Hettinger wrote: I have to agree that cancer is the dreaded gremlin that no one wants to talk about but as I have found out the hard way it is definitely the issue that needs addressing. After my husband died and I prepared for his memorial service, I was looking for more information to have on PSC to raise the awareness among my circle of friends. In trying to describe the disease in a way that the layman might understand I would talk about Walter Payton the football player and his announcement of having PSC and needing a liver transplant but dying of cancer before that occurred. When he first made his announcement my husband and I both thought, great now someone famous can finally bring this disease into the limelight much like Fox has done for Parkinsons. That didn't happen and even more disappointing to me now is that if you go to Walter Paytons website there is barely even a mention of PSC,

his foundation has been set up for cancer research. Yes cancer killed him but it most assuredly was a result of the PSC much like my husbands. The biggest thing I want to say to all of you out there still fighting this disease is fight!!! In that I mean don't let your drs become so focused on the liver and transplantation that they lose sight of the whole patient. This is what I feel was the final undoing for my husband and I am kicking myself now for not listening to my inner voice and his inner voice that kept telling us there was more going on in his body than his liver not draining properly and we didn't speak up more. I know nothing can be done for him now by looking back and saying maybe we should have done this or that but I am saying it to everyone here now to hopefully keep you or your loved one from going through the months of misery that we did. My husband in how horrible he felt, how hopeless he

felt, how upset he was at what he was putting me through. He was in pain and he was worried about what a burden to me he had become. That all my time was being taken up caring for him that I barely had time for our daughter. Back in January after he came out of ICU if the big picture would have been looked at there and we would have known then that he had cancer and not transplantable then certainly the time that he did have left could have been spent in a much better way than feeling like you were someones science experiment. This is also the reason that I donated his body in the hopes that not another person would have to go through what he went through. Ok I've vented enough. This has not been one of my better days as I have missed him so very much. Though my husband is gone his disease will forever be a part of my life and I keep my fingers crossed that neither of our children

will develop it either. Hettinger Sucker-punch spam with award-winning protection.Try the free Yahoo! Mail Beta.

[Guest guest]

Hi Martha;

Sorry for not responding sooner. Although it is quite early days for

the STOPSC registry, I think that what they will be trying to

accomplish is something similar to what is being accomplished with

the psoriatic arthritis and psoriasis registries:

Gladman DD, Ritchlin C, Helliwell PS. Psoriatic arthritis clinical

registries and genomics. Ann Rheum Dis. 2005 Mar;64 Suppl 2:ii103-5.

PMID: 15708920.

http://ard.bmj.com/cgi/content/full/64/suppl_2/ii103

Elder JT. Psoriasis clinical registries, genetics, and genomics.

Ann Rheum Dis. 2005 Mar;64 Suppl 2:ii106-7. MID: 15708921.

http://ard.bmj.com/cgi/content/full/64/suppl_2/ii106

These registries offer the opportunity to follow a large number of

patients over a long period of time, identify genetic (and

environmental) risk factors for disease initiation and progression,

help find clues as to pathogenesis, and coordinate clinical trials of

emerging therapies.

It's very costly to set up and maintain a registry, but the

family has been very generous in getting the STOPSC registry started.

We should all want to see this effort succeed, and PSC Partners

Seeking a Cure funding of the registry makes good sense. Perhaps in

the future, when the registry gets well established, we could be

involved in their patient education efforts? Right now the STOPSC

registry is funded soley by families afflicted by PSC (i.e. the

s, and PSC Partners Seeking a Cure). The hope is that NIH will

eventually contribute funds to maintain it.

I'm sure that the researchers involved with STOPSC are already

familiar with the literature. The PSC Literature site was mostly

developed for the benefit of patients and caregivers.

Best regards,

Dave R.

> , Thanks for directing us to the STOPSC registry website.

Could you explain a bit more about how it works to support research

beyond collecting data on patients?

> I noticed they didn't have your PSC literature website on the links

page. This type of focused website could be useful to researchers in

a different way than a PubMed search is.

[Guest guest]

, I too want to thank you for sharing your thoughts about Mark's

care and experience with CCA. I deeply appreciate your care for others

with PSC even as you have lost your dear spouse. I agree with Ivor in

calling for a best practice guide to PSC care for physicians. Maybe

the article just posted is a good start. Unfortunately it's not

on my library's journal list.

Curr Treat Options Gastroenterol. 2007 Mar;10(2):111-9.

Treatment of primary sclerosing cholangitis.

Rost D, Kulaksiz H, Stiehl A

> The biggest thing I want to say to all of you out there still

fighting this disease is fight!!! In that I mean don't let your drs

become so focused on the liver and transplantation that they lose

sight of the whole patient.

[Guest guest]

While it shouldn't ease your conscience if you can donate to PSC

Partners but are sitting on the fence, this year I'm making the

minimum donation that Barb suggested to PSC Partners for EVERY single

member of the PSC support board, as of tonight, in honor of all who

have fought and are fighting and will fight cholangiocarcinoma. I

encourage anyone who can donate to do so, but feel free to speak out

here no matter what your financial situation may be.

Martha (MA)

> Have you made a contribution to PSC Partners? Why not? A few years ago

> I asked everyone to send in a dollar - thinking that if everyone did, we

> have a tidy sum (we have over a thousand members!)

> Please make a donation now:

>

> PSC Partners Seeking a Cure

> 5237 So. Kenton Way

> Englewood, CO 80111