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help rere disease (Read 4957 times)
peter
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help rere disease
02/28/13 at 11:02:40
 
for rare disease day


patients trying to share medical information with people on the other side of the world


my story will not help but the medical information that i share might it will not be understood


by patients or ME but if doctors see it then they will understand and maybe help them help us


but it must be the truth


that is what i have been trying to do is it  right or wrong i do not know
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Lisa
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Re: help rere disease
Reply #1 - 03/01/13 at 07:55:54
 
Good for you Peter!!   This is all any one of us can do - raise AWARENESS!!!


Keep up the good work!!!   I'm proud of you for I know it's very challenging for you!!!


Hugs!!!
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Donīt forget, there is so much more to life than being sick!
 
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peter
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Re: help rere disease
Reply #2 - 03/19/13 at 15:05:38
 

hi lisa this is why there has been so much fuss

A massive amount of medical research on mast cell disease why
Graft-versus-leukemia (GVL) is a major component of the overall beneficial effects of allogeneic bone marrow transplantation

The infusion of ex vivo activated and expanded CD4(+)CD25(+)  effective graft-versus-leukemia response. ... in CD4+CD25+ regulatory T-cell activity to suppress alloimmune responses.

Beneficial alloimmune responses  on hematopoietic tumor cells resulting in graft versus leukemia (GVL) and contribute to the eradication of cancer

this is why i came good after cd25+ mast cells ented my bone marrow
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Lisa
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Re: help rere disease
Reply #3 - 03/23/13 at 04:44:59
 
Wow!   This is REALLY, REALLY interesting Peter!!!!!!!!!!   Interesting Indeed!!!!!!


Smiley
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peter
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Re: help rere disease
Reply #4 - 03/23/13 at 13:59:36
 
Ha lisa wow was the very aggressive mast cell cscroma on my chest and the big brown fish scales on my forehead 2009

witch diserpired my doc sead there were about 7 other casers in the world O survived

they found an all immune t-b-nk-mast cell ex ex response after the BMB with tryptase going up which saved my life

but if i told you this in 2009 no one would believe me  

we were used as ginny pigs and i new so few could not stop it so i got other people to help as you did

thank you all
un-believerbull i no but is the truth
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Lisa
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Re: help rere disease
Reply #5 - 03/23/13 at 15:06:09
 
Wow, Peter, that's quite a testamony!!!!!   Now I'm beginning to gain understanding as to you and why you have gained such insight.  You humble me, brother, since at first I could not understand what you were saying and had stood hard as to how mastocytosis could not be connected to other things.  I still sting with shame when I remember our encounter!  I'm so glad that you have forgiven my ignorance and been gracious with me!!  I stand in awe of you!!!


For those who may be having a bit of trouble following Peter and what he is trying to say, this is an article which may help you gain insight.

Peter has been saying for several years now, prior to recent research that has been seriously indicating that mast cell disorders may be the underlying connection with various diseases which heretofore were believed to be totally disconnected to one another.  It took me TIME and suspicions regarding my own case and that of my family to force me to take a larger look at MC research, going beyond that of mere mastocytosis to that of looking at diseases on a genetic/cellular basis.  Peter had formulate these very theories without having that benefit which I had.  Hats off to you, Peter, for having such a large vision of this!!!

Lisa



Bone Marrow Transplant. 1990 Sep;6(3):155-61.

The graft-versus-leukemia (GVL) phenomenon: is GVL separable from GVHD?

Slavin S, Ackerstein A, Naparstek E, Or R, Weiss L.


Source

Department of Bone Marrow Transplantation & Cancer Immunobiology, Hadassah University Hospital, Jerusalem, Israel.


Abstract


Graft-versus-leukemia (GVL) is a major component of the overall beneficial effects of allogeneic bone marrow transplantation (BMT) in the treatment of leukemia. Although several clinical trials have suggested a direct relationship between GVL effects and acute and chronic graft-versus-host disease (GVHD), it is not yet known whether GVL can be separated from GVHD. However, several investigations in murine models of human leukemia indicate that the two may be at least partially separable. Moreover, analysis of clinical data from the International Bone Marrow Transplant Registry suggest that allogeneic BMT may be more advantageous than syngeneic BMT, regardless of the GVHD. Likewise, T lymphocyte depletion is associated with an increased incidence of relapse, independently of GVHD. Recent investigations in murine leukemia suggest that GVL-like effects may be inducible following syngeneic BMT by recombinant cytokines with no overt GVHD. Taken together, current data in experimental animals and man suggest that GVL may be at least partially separable from GVHD. Hence, further understanding of effector and target cells of GVL as well as our ability to induce antitumor effector cells, especially those that are MHC nonrestricted, may lead to new approaches for potentiating anti-tumor effector mechanisms without inducing severe, clinically overt GVHD. Successful attempts in these directions may also lead to improved results following autologous BMT as a result of activation of GVL-like effects by recombinant cytokines that are capable of activating effector cells with anti-leukemic activity in vivo, such as recombinant human IL2, alpha interferon or perhaps a synergistic combination of factors.

http://www.ncbi.nlm.nih.gov/pubmed/2252954
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peter
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Re: help rere disease
Reply #6 - 06/10/13 at 18:26:58
 
ha lisa do you no what the difference is from Graft versus host disorder and BONE MARROW INFITRATION OF mast cells or clonal cd25+ mast cells
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Riverwn
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Re: help rere disease
Reply #7 - 06/14/13 at 10:46:01
 
I think writing about our experience is a great idea to help those who come after us. Many of us dont have that ability but there is something you can do. I have quite a few expert DRs who treat conditions that arent usually mast cell but ARE affected by it. I have told my DRs that they are welcome to write about me (Most DRs want to publish for their careers). I also give them permission to use my medical records and name.  My Optometrist is writing a paper about how Mastocytosis affects eyes. Im hoping all of our experiences might help a cure.
Crossing my Fingers,
Ramona
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Re: help rere disease
Reply #8 - 06/15/13 at 02:22:43
 
Ramona I would be really interested in what your eye doctor has to say in regard to mastocytosis effecting your eyes..
my friend Olive and I have talked about how especially early morning our eye sight is not as clear but improves some as the days so on...
redbird
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peter
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Re: help rere disease
Reply #9 - 06/22/13 at 21:11:09
 
Hi looks like i might be coming over to viset  if i get to see your dr akin any one for fishing
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DeborahW, Founder
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Re: help rere disease
Reply #10 - 06/23/13 at 14:38:10
 
That is great news Peter!!! I hope you get in to see him!
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Feel well!
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