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Car T-Cell

yesyes2
Posts: 586
Joined: Jul 2009

There will be a talk with Q&A put on by the Leukemia & Lymphoma Society on Tuesday January 22, 2019.  The title is Car T-Cell Therapy in Children and Adults with Blood Cancers.  Thought some of our members might be interested.

Have a Happy New Year with lots of good test results. 

 

Http://www.lls.education/blog/

Evarista
Posts: 250
Joined: May 2017

...for posting this, YesYes.  I am going to pass this on to Lori via private message.  She's on the LLS site and may know about it already.  Will definitely try to tune in as well.

ShadyGuy's picture
ShadyGuy
Posts: 355
Joined: Jan 2017
ShadyGuy's picture
ShadyGuy
Posts: 355
Joined: Jan 2017

to register you must give name, address, date of birth and a bunch of other very personal info with no privacy policy provided. That makes me nervous. For one thing it is NOT a secure https:// connection therefore it is open to being read all along its trip to lls.  Who knows how this info is distributed Or who has access to it either clandestinely or by intent. This is how a phishing scheme Site works.

Rocquie's picture
Rocquie
Posts: 826
Joined: Mar 2013

Shady, I have been a member of the LLS for about 6 years. I even received a stipend from them in the beginning, arranged through Duke University Medical Center. I have never experienced or suspected any invasion of privacy from my membership. I have never been solicited for donations. As far as I can tell they have never compromised my mailing or email address in any way. They probably use the information they gather for grant proposals. 

I attend a local monthly support group sponsorsed by them. I have participated in their "Light the Night" walks to build awareness and raise funds for research and support of patients.  I find participation in such events a way to express my gratitude for the love and care I have received as a patient. 

Cheers,

Rocquie

 

ShadyGuy's picture
ShadyGuy
Posts: 355
Joined: Jan 2017

I am sure they are great people. Guess I am just too much of a Geek. As we say here in the mountains “once bitten twice afraid”. I have had credit cards compromised and even my supposedly “secure” paid email service hacked. After the Department of Personnel Management (government) hack a few years back I received a letter saying all my clearance documents were stolen probably by the Chinese. Some of that data is beyond private. One of the main weaknesses in small orgs like LLS is usually in the contractor they buy software and support from. All it takes is one bad apple. Please believe me I am not questioning the excellent work or character of the lls. Still I just do not send personal data over an unsecure connection.

Evarista
Posts: 250
Joined: May 2017

Hi Shady.  I am another person who has joined various things at LLS.org without issue.  I understand your concern, of course, but I have to say that they never send me anything, either by email or snail mail.  The exception is those things that I have signed up for specifically to have contact, such as the Light The Night annual fundraiser.

I have also found that I need to register separately for different "components" of LLS activites, such as Groups and Llive Chats.  For the chats, I can go in either as a registrant or as a guest.

For the CAR-T seminar, it looked to me as though the only real entry that you would need to make is email address.  But waiting for the podcast should work too!

yesyes2
Posts: 586
Joined: Jul 2009

I have never had a problem with the  Leukemia & Lymphoma Society and have been using their services 2008.  It's not a phishing scheme.  Other then age I have always been asked for name, address, phone number and email address on all lecture enrollments.  What I receive in the future are notifications of future talks.  If you feel it's not a good idea for you than I don't think you should sign up.  Several weeks after the lecture it is available as a pod cast and I don't think you need to give any information to listen to the pod.

.

 

ShadyGuy's picture
ShadyGuy
Posts: 355
Joined: Jan 2017

i will wait for the podcast. Its a non secure connection. I am sure they are fine but others may not be.

Boatman24
Posts: 1
Joined: Dec 2018

I have been through the treatment with Seattle Cancer Care Alliance. This started back in June of 2017. As of today I am cancer free. The treatment for me was some what easy. Did have a issue with neutropenia twice. And a cold type issues. Had to stay close to the facility for a month and half. This was mostly a out patient treatment. In August 2017 they told me I was cancer free!! No side effects at this time. 

To anyone that is going to try this is to ask questions, how long have they been doing this, results and what has been the issues with patients during the treatment. Once the cancer is gone i would say you should get back to a normal life. 

I myself having issue with my bone marrow not producing and need blood and platelets one a week. This was caused by the previous chemo treaments. I will ask if anyone else might be going through this. 

I will try to answer any questions as they come about. Keep up the good work and believe. We will win this battle! 

ShadyGuy's picture
ShadyGuy
Posts: 355
Joined: Jan 2017

Low platelets, low RBC, misshapened blood cells and various other blood irregularities due to bone marrow issues. It was probably caused by the chemo I finished in July and my ongoing Rituxan treatments as I have not had CAR-T.  CAR-T may well be in my future. Here’s hoping it will go away with time and I will not need the CAR-T. Good luck with your health. You may want to continue this topic in a new thread.

I am assuming you are satisfied with the CAR-T results. Would you recommend it other than as a last resort? Anything you would caution a potential CAR-T patient about?

ShadyGuy's picture
ShadyGuy
Posts: 355
Joined: Jan 2017

however I still do not provide personal or health info on a unsecure connection. Just me I guess. I tried not putting in address or date of birth and it said they are required information. i am too sick to deal with it so maybe I will register by phone. 

“ Just being paranoid doesn’t mean they are not really out to get you”(sic)

Woody Allen

Have a great New Years eve. I have a bottle of 18 year old Glenlivet for mine!

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