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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Apr 14 3:02pm | Replies (9325)Comment receiving replies
Heather, you are NOT going to believe this .. BUT when reading this article .. something clicked! I went back to my research on my husband's chemotherapy. If it works for CLL cancer .. WHY couldn't they come up with something for us??????? Made sense to a NON MEDICAL person like me! Katherine Here is what I found:
MY HUSBAND'S CLL CHEMOTHERAPY DRUG IMBRUVICA that he has been on for two years .. that his Oncologist has said is NOT a cure but is "life sustaining" .. a type of drug called: Immunotherapy.
Immunotherapy is a broad category of anti-cancer therapies that use the body’s immune system to fight cancer cells. These cells are different from normal cells, in that they do not die normally. Think of these rapidly-dividing cells like an out-of-control copy machine that won’t stop creating images. These abnormal cells frequently change, or “mutate,” to evade the immune system. Immunotherapy drugs are designed to alert the immune system about these mutated cells so it can locate and destroy them.
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http://www.voanews.com/a/scientists-natural-immunity-fight-infection-without-antibiotics/3307299.html
Scientists in Sweden, however, may have found an alternative to using antibiotics.
In a mouse model, the scientists trained the body’s natural immune system, called innate immunity, to disarm and destroy a bacterium that causes a kidney infection, often in children.
The innate immune system is the front line of the body's defenses, and it works in two different ways to fight infections.
The first is what researchers call a "good antibacterial defense" that targets and kills the invading pathogen. The second causes inflammation — the redness, swelling and fever that accompany an illness or injury. It's a vital part of the immune response but also can cause significant tissue damage, and in some cases it can contribute to the progress of the disease or infection.
"So the question has been: Can you find a way of treating infections by stopping the bad part of the immune defense and still keep the antibacterial defense?" said Catharina Svanborg, a professor of clinical immunology at Lund University in Sweden. "This is what we have done in our model.”
Replies to "Heather, you are NOT going to believe this .. BUT when reading this article .. something..."
Heather, just an update. Am working on getting together an "advocacy" group to continue with all the hard work you have done to try to get research labs to find new antibiotics for OUR MAC disease. You have worked SO hard . done so much research! I have kept all your notes and am waiting for an answer from one of our group that I have approached to head up a new "sub Forum" to further this effort! Hopefully if this person does not want to Mentor the new Forum .. someone else in our Forum will step up to the plate.
I will keep you posted. Members of our Forum writing to the different research labs .. telling about their own personal MAC journey .. AND requesting the various Labs to PLEASE pursue research into our MAC disease certainly MAY have an impact. Especially if we involve the American Heart Assn AND the NTM Assn in a writing campaign! I think your idea was just brilliant! Together .. in mass .. we can have an impact! Strength in numbers!! So again, thank you for the idea .. for getting it started .. and I will keep you posted! Hugs to you and to all! Katherine
Heather, I agree. However, my husband and I have traveled all over the world and have felt terribly ignorant due to the fact we speak merely one language .. English .. whereas in most countries we visit they are at LEAST bilingual! My bet is Catharina speaks/writes English better than I do so I DEFINITELT feel it would be a good idea for me to point out the life giving affect of the Imbruvica for my husband! Thanks for the idea! Hugs! Katherine (Heather, just going to email it .. but where/how did you find her email address? Could you let me know! .. You are one smartie! What are your email methods? I'd like to know! You techie, you!)
Inasmuch as this new therapy has promise, docs are now finding it has many deadly side-effects, like people's organs shutting down... Until it's better perfected, researchers are recommending limited use of it to those with end-stage cancer... as with gene therapy, and similar to early-stage cancer therapies, it's not yet ready for prime-time...
I just google the name and university name and then "email address" sometimes I get lucky soetimes not, hers was easy, have a try. let me know it you cant find it.
my pleasure, thanks to you too and keep us posted.
All you are doing is wondering, Katherine and others - but I need to get off this forum temporarily as I find it hard to find other e-mails I need to read. So, could you do that for me? And, I know I will be checking back in this summer. Very best, thank you for being my anchor through hard times. Kathryn
Hello Kathryn, I truly do understand that the volume of emails from Connect can get overwhelming at times, especially when dealing with your health. When I asked what to do .. because I was not aware .. I was told that the way you handle it is the following:
You can control your account settings here: https://connect.mayoclinic.org/account
OR you can: - Turn off all email notifications
OR you can - Select to receive only those groups and discussions you follow
Please let me know if you need further help in how to do this, but writing to me here: https://connect.mayoclinic.org/contact-a-community-moderator/ Colleen Young, Connect Director@colleenyoung
PS: You can also click unsubscribe at the bottom of any email you receive from Connect.
Hope the above helps! Come back to our Forum as you are able .. we will be here for you as you need us .. we will STILL be your anchor if hard times come! Hugs to you! Katherine
Great tips @katemn!
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wow sounds familiar alll right, I emailed Catharina but dont know it she speaks english, you may want to email her also. TB is on the urgent threat list but isnt there more people with MAC now? we should look into that and suggest it goes on the urgent list also, it would help our case alot.