Bummer...I knew a former A-6 BN that went to sleep off the cat and woke
up in sick bay - that was the event that lead to his eventual diagnosis
of cystic fibrosis. He was one seriously smart guy...lost him to the
disease a few years back.
My disease isn't as severe, and I take 9 Colazal a day to keep it in
check. Can't recall the last time I ate a pain killer, so I may be able
to fly again...I've done some s****t jumping, too, and used to jump with
an assortment of Navy Test Jumpers (but not as one of them) and SF guys
at play. Hat's off to you for your Navy service.
I've been hearing a bit about work with adult stem cells, and that's why
I asked. Hearing some positive feedback on that front (not necessarily
with IBD) so maybe this therapy is just in it's "infancy" and something
could come in time. It's the fact that the gene is "in your blood" and
not alterable that made me ask about this being a therapy vice a
"cure"...was pretty sure it wouldn't/couldn't "cure" for that reason.
Does sound promising, thanks.
--
- Rufus
xUSNFlyer wrote:
> The Crohn's ended my Navy career, however, I was lucky enough to have
> had almost 10 years and the did a medical board and chose to retire me.
> But that was 12 years ago and when I first retired/discovered I had
> Crohn's I was mad at everyone and everything as I couldn't have a second
> career, but as my mother told me when I was young, "if life gives you
> lemons, make lemonade". I couldn't keep flying even as a civilian as
> the FAA doesn't look real kindly on the 390mg of morphine I have to take
> daily.
>
> But concerning your own stem cells, from what the study says and the RN
> told me they are not "yours" as unless you have some saved (frozen) when
> you were born, that NOD2 gene is already in your blood. The simplest
> way I can explain it is that they have stem cells that are healthy and
> when given to a Crohn's patient, they go and try to take the place of
> the stem cells that are attacking the intestine.
>
> I might be a father this fall and I am going to have some of his stem
> cells preserved for future use. It is expensive, but I am 100%
> convinced that this stem cells study will either become a simple
> treatment for Crohn's or ideally some type of cure, hence why I am going
> to have some of his natural stem cells available for treatment some
> day. For the last 2 years I have had to watch my father battle brain
> cancer, a very rare type and had it been caught earlier he could of some
> sort of stem cell wash, but by the time we got to one of the top
> Oncologist in Lymphoma, his memory was too far gone.
>
> If anyone is interested in the clinical trials that are entering Phase
> III, please email me and we can correspond privately. Or you can call
> the company on the link "anon" put in a previous message in this thread.
> According to the RN I spoke with, should this gets FDA approval, Topeka,
> Kansas (Cotton O'Neil Digestive Center) will be the HQ for future R&D
> and treatment. I just wish I could tell you that this is the answer,
> though hopefully I will be able to tell you that at some point in the
> future as it is very promising.
>
> Ken
>
>
> "Rufus" <not@[EMAIL PROTECTED]
> wrote in message
> news:o_X9k.231679$yE1.202818@[EMAIL PROTECTED]
>> Yes, thanks. Would also like to know if they prepare the infusion
>> from stem cells derived from the patients own tissue - that would be
>> the ultimate. Please keep us up to date on the progress of this study.
>>
>>
>> ...hope your disease didn't/doesn't stop you from flying. I have a
>> private ticket myself, and want to start up again.
>>
>> --
>> - Rufus
>>
>> xUSNFlyer wrote:
>>> Rufus,
>>>
>>> From what I have read and what the RN told me if it is approved it
>>> will be a treatment, but as with virtually everything else it would
>>> depend on the individual and severity of their Crohn's. The RN said
>>> that you might need an injection of the stem cells every 6 months or
>>> maybe a year. I wish the data from the Phase 2 study that anon
>>> referenced was available, but they are now accepting applications for
>>> Phase 3 and it is on the "Fast Track" for FDA approval. For myself,
>>> I would prefer an injection or infusion once a year instead of my
>>> current regimen of 100mg of Immuran and 1gram of Pentasa daily. The
>>> RN I spoke with that though this is just a treatment now, she feels
>>> that it could lead to replacing the NOD-2 gene (the one that causes
>>> Crohn's) through stem cells.
>>>
>>> Hope this helps.
>>>
>>> Ken
>>>
>>>
>>>
>>> "Rufus" <not@[EMAIL PROTECTED]
> wrote in message
>>> news:%KR9k.231260$yE1.156323@[EMAIL PROTECTED]
>>>> This would be another therapy, right? Not a "cure"?..
>>>>
>>>> --
>>>> - Rufus
>>>>
>>>> anon wrote:
>>>>> For some reason, my original post of this article came with an
>>>>> attachment, so I am reposting it--this time, without any
>>>>> attachments, I hope.
>>>>> Newsday.com
>>>>> Researchers to test stem cells to treat Crohn's
>>>>> BY DELTHIA RICKS
>>>>>
>>>>> delthia.ricks@[EMAIL PROTECTED]
>>>>>
>>>>> June 18, 2008
>>>>>
>>>>> Stem cells may force Crohn's disease into retreat, say Long Island
>>>>> medical investigators who are embarking on a pioneering analysis
>>>>> that targets patients who've failed other therapies.
>>>>>
>>>>> Cases of Crohn's disease have skyrocketed since World War II,
>>>>> jumping tenfold in the United States and raising questions about
>>>>> the disease's genetics and demography. It is one of two disorders -
>>>>> the other is ulcerative colitis - that are known as inflammatory
>>>>> bowel diseases. Before the 20th century there was no recorded
>>>>> evidence of either.
>>>>>
>>>>> Dr. Robert Richards, director of clinical research in the
>>>>> gastroenterology division at Stony Brook University Medical Center,
>>>>> is embarking on a clinical study involving the infusion of adult
>>>>> stem cells, which he and other researchers theorize may force the
>>>>> condition into retreat. His analysis is part of a multicenter trial
>>>>> nationwide, focusing on patients with moderate to severe forms of
>>>>> the disease.
>>>>>
>>>>> Patients had "basically tried all of the medications that are out
>>>>> there for Crohn's and have not done well or have become intolerant
>>>>> to [standard] treatment," Richards said.
>>>>>
>>>>> The stem cells are drawn from the bone marrow of adult donors and
>>>>> processed into an infusible preparation. Because stem cells are
>>>>> essentially blank slates capable of morphing into any kind of cell,
>>>>> researchers believe that when infused into the intestinal tract,
>>>>> they will help remodel cells there and relieve symptoms.
>>>>>
>>>>> Inflammation caused by Crohn's disease can occur anywhere along the
>>>>> tract from the mouth to the anus. Symptoms may wax and wane but the
>>>>> inflammation can lead to scarring, which dramatically disrupts
>>>>> intestinal function. Some people are racked with painful diarrhea
>>>>> tinged with blood.
>>>>>
>>>>> Current therapies include anti-inflammatory drugs and antibiotics.
>>>>> Additional treatments include those that quell the activity of
>>>>> certain parts of the immune system. Among the theories explaining
>>>>> the cause of Crohn's is that it is triggered by turncoat cells, so
>>>>> that the body is at war with itself.
>>>>>
>>>>> Two weeks ago the Food and Drug Administration announced an
>>>>> investigation into three drugs that tamp down the immune system,
>>>>> following 30 re****ts of children and young adults who developed
>>>>> cancer.
>>>>>
>>>>> Edda Ramsdell, executive director of Long Island's division of the
>>>>> Crohn's and Colitis Foundation of America, said the stem cell
>>>>> research could provide a new avenue. "This is exciting but there
>>>>> probably isn't a single answer. People react differently to
>>>>> treatments," she said.
>>>>>
>>>>> Dr. R. Balfour Sartor of the University of North Carolina,
>>>>> scientific adviser to the foundation, said it's always im****tant to
>>>>> explore new therapies, including stem cells. "I am frustrated by
>>>>> the lack of current medical and even surgical cures of this
>>>>> disease," said Sartor, who will speak next month on Long Island
>>>>> about his new dietary theory.
>>>>>
>>>>> Richards' stem cell study will run for a year. Patients will range
>>>>> between 18 and 70.
>>>>>
>>>>> CROHN'S DISEASE EXPLAINED
>>>>>
>>>>> Crohn's tends to run in families, and susceptibility genes have
>>>>> been identified. People of Ashkenazi Jewish descent have a higher
>>>>> incidence compared with other ethnic groups. The disorder is not
>>>>> especially prevalent among Sephardic Jews.
>>>>>
>>>>> First described in 1930 by Dr. Burrill Crohn of Mt. Sinai Hospital
>>>>> in Manhattan. Before the 20th century there was no recorded
>>>>> evidence of Crohn's or ulcerative colitis, both inflammatory bowel
>>>>> diseases. Generally, colitis is viewed as serious, but not as
>>>>> devastating as Crohn's.
>>>>>
>>>>> Crohn's is diagnosed more often in industrialized countries where
>>>>> sugar consumption is very high, and less so in underdeveloped
>>>>> countries, though scientists note an increase worldwide. Some
>>>>> scientists think excessive sugar consumption may affect the
>>>>> genetically susceptible to Crohn's by altering the balance of
>>>>> bacteria that inhabit the intestinal tract.
>>>>>
>>>>> Long Island is dispro****tionately affected by people with Crohn's
>>>>> disease, based on genetics and demographics. The Crohn's and
>>>>> Colitis Foundation of America estimates 30,000 Long Islanders have
>>>>> Crohn's disease, or ulcerative colitis. Nationwide, more than 1
>>>>> million people have an inflammatory bowel disease.
>>>>>
>>>>> Copyright © 2008, Newsday Inc.
>>>>>
>
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