I don't have to apologize!!!

Or edit any comments from the last three months!

That is huge.

«13

Comments

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    Dear God

    This is the self-preservation society
    This is the self-preservation society

     

    Elected Captain 

  • Evarista
    Evarista Member Posts: 332 Member
    What about the new users?

    Assume that those people who joined after the above date are no longer reachable?  Anyone looking for Lori can find her in the LLS forums, but I feel terrible about losing touch with Debbie..Such a rough week for both of these two.  Hope to see them back soon.

  • po18guy
    po18guy Member Posts: 1,297 Member
    Evarista said:

    What about the new users?

    Assume that those people who joined after the above date are no longer reachable?  Anyone looking for Lori can find her in the LLS forums, but I feel terrible about losing touch with Debbie..Such a rough week for both of these two.  Hope to see them back soon.

    Well...

    When they check in, they will see the notification and can simply begin another thread, I guess.

  • DJS628
    DJS628 Member Posts: 77
    Evarista said:

    What about the new users?

    Assume that those people who joined after the above date are no longer reachable?  Anyone looking for Lori can find her in the LLS forums, but I feel terrible about losing touch with Debbie..Such a rough week for both of these two.  Hope to see them back soon.

    Still Here!

    Hi Evarista and PoGuy and Everyone Else,

     

    I am still here.  I couldn't log on on the first 2 tries, but the third try was "the charm!"

     

    I hope Lori is doing well?  I had a pm post that I was going to respond back to, but not sure if I still can after the outage?  I will see if it's there after posting this.

     

    Thanks Evarista for thinking of me and Lori, and others, too!  :-)

     

    Po....did you get an answer from SCCA regarding CAR T Cell Immunotherapy during remission?  I will be calling over there tomorrow.  The suspense is killing me.

     

    Glad the outage is over.

     

    ---Debbie

     

    Evarista, did you get my note regarding adding to my signature the other day?

     

     

  • po18guy
    po18guy Member Posts: 1,297 Member
    DJS628 said:

    Still Here!

    Hi Evarista and PoGuy and Everyone Else,

     

    I am still here.  I couldn't log on on the first 2 tries, but the third try was "the charm!"

     

    I hope Lori is doing well?  I had a pm post that I was going to respond back to, but not sure if I still can after the outage?  I will see if it's there after posting this.

     

    Thanks Evarista for thinking of me and Lori, and others, too!  :-)

     

    Po....did you get an answer from SCCA regarding CAR T Cell Immunotherapy during remission?  I will be calling over there tomorrow.  The suspense is killing me.

     

    Glad the outage is over.

     

    ---Debbie

     

    Evarista, did you get my note regarding adding to my signature the other day?

     

     

    NOW I have to apologize

    Went to Seattle, but doctor forgot to enter my appointment into the computer, so it did not exist. I could have my blood drawn, but might not get in to see doctor. We ran some errands and went home. Frown

  • Rexmax
    Rexmax Member Posts: 55 Member
    I'm still here

    Took awhile to get back on....hopefully everyone can get back in touch 

  • PeprmntPat55
    PeprmntPat55 Member Posts: 66 Member
    edited January 2019 #8
    Weird

    So weird how stuff like that happens. Technology. You can send a man to the moon but......... and po18guy they forgot to enter your appointment into the computer???  Some days I think the universe is all out of kilter :-)

  • po18guy
    po18guy Member Posts: 1,297 Member

    Weird

    So weird how stuff like that happens. Technology. You can send a man to the moon but......... and po18guy they forgot to enter your appointment into the computer???  Some days I think the universe is all out of kilter :-)

    Well...

    You were very young in the 80s, but we were all told that computers would speed everything up. Uh-huh.

    If you're going to lie, lie BIG!

  • Evarista
    Evarista Member Posts: 332 Member
    Old timers

    If I'm not mistaken, I think this means that Cobra can rejoin the conversation!

  • Sal0101
    Sal0101 Member Posts: 136 Member
    I’m still here!

    I’m still here! I‘m following all of the Car-T conversations.  I like to try and keep current on new advances In case I would relapse again.  This site was a tremendous help to me in the past, so I’m glad it’s back up and running! 

    Sharon

  • lindary
    lindary Member Posts: 711 Member
    Hello computers!

    I've been working in IT for almost 45 years. When I started security meant having the computers in a locked area that only authorized people had access to. Keeping data safe only menat regular bacukps. Where I work we have gone from Mainframe to a mid-range de-centralized to multiple servers with data spread all over. Yesterday we had a situation where they had a scheduled downl time for one of the servers. They generated all of the paper work and sent out notices to all teams in preparation for it. All affected applications were to be stopped at at a pre-set time. They sent out a final reminder of the downtime and one of the people on our team says "but application xyz is still up". Turns out the people in charge of XYZ never bothered to read the notices so they didn't know about the downtime. All was taken care of and the planned activity was done without any problems.

    From an IT perspective I can think of several things they should have done to avoid loss of data. When I think of what almost happened in spite of the paperwork and "notifications" that are sent out before any major actions happen to a server, I'll get them IT people for this forum a break. 

    As to the Dr who forgot to put an appointment on the calendar .....Human error.

     

     

  • DJS628
    DJS628 Member Posts: 77
    What?!!

    Po,

     

    How did they not put your appointment into the computer?!!  That better not happen to me when I go; it's a long drive and over a mountain pass, too.  I'd be pretty upset.

     

    Well, I got word that my insurance did not approve the treatment (this was second time; appeal). I let my oncologist know in town and he sent me a message saying I need it now.  Maybe I need to go to litigation.  But...?

     

    I didn't tell the oncologists that I contacted other places.  Leukemia and Lymphoma Society told me that you don't get CAR T-Cell Immunotherapy if you don't have active disease.  I even contacted Dana Farber and they said the same thing to me.  So in a way I was relieved I won't get it very soon. 

     

    But how do I know that it is accepted treatment, but the insurance is lagging behind the research and information?  I am not a doctor, but I can see perhaps it's best to wait until you have active disease (but what if it doesn't recur?!! Or what if it starts growing too fast by time they can make the treatment?!!).  I don't know what to think at this moment.

    Any advice would be appreciated.  Has anyone else asked their oncologist my question about CAR-T Cell Immunotherapy?  Can it be given while the patient is still in remission?  Will it still work? 

     

    All I know is that the ASH meeting on Dec. 2nd may have new information, but I don't know any of the details?

     

    If anyone knows anything about CAR T-Cell Immunotherapy during remission, please let me know.

     

    Then again, maybe I should side with ShadyGuy....when I need it, it should be improved by then?

     

    Have  good evening,

     

    Debbie

  • DJS628
    DJS628 Member Posts: 77
    Sal0101 said:

    I’m still here!

    I’m still here! I‘m following all of the Car-T conversations.  I like to try and keep current on new advances In case I would relapse again.  This site was a tremendous help to me in the past, so I’m glad it’s back up and running! 

    Sharon

    CAR- T Cell?

    Hi Sharon,

    You said you've been following the CAR -T conversations?  Have you done research on it?  Do you know anything about it being given during remission?

    I don't know your story, but I sure hope you don't relapse!

     

    ---Debbie

  • po18guy
    po18guy Member Posts: 1,297 Member
    Ruxolitinib arrived as usual

    So, if I have been placed on forget, that is fine with me. I mean, my steroid taper can be done via phone. Still getting used to this whole no port thing. Seatbelt and guitar strap no longer chafe like cheap underwear. Doctor assured me that after my last procedure I could play guitar. "That's great!" I fired back. "I coundn't play at all before..."

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    Sal0101 said:

    I’m still here!

    I’m still here! I‘m following all of the Car-T conversations.  I like to try and keep current on new advances In case I would relapse again.  This site was a tremendous help to me in the past, so I’m glad it’s back up and running! 

    Sharon

    Wonderful

    Havn't seen you in quite some time, Sal.  Delighted to see you back again.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    Joy

    Po,

    Most likely, your joy will be short-lived...

    max

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member

    Weird

    So weird how stuff like that happens. Technology. You can send a man to the moon but......... and po18guy they forgot to enter your appointment into the computer???  Some days I think the universe is all out of kilter :-)

    Huge

    The amount of data loss was huge.  The staff is obviously more expert at thought-correction than technology; probably brought in from Facebook.

    max

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,736 Member
    DJS628 said:

    What?!!

    Po,

     

    How did they not put your appointment into the computer?!!  That better not happen to me when I go; it's a long drive and over a mountain pass, too.  I'd be pretty upset.

     

    Well, I got word that my insurance did not approve the treatment (this was second time; appeal). I let my oncologist know in town and he sent me a message saying I need it now.  Maybe I need to go to litigation.  But...?

     

    I didn't tell the oncologists that I contacted other places.  Leukemia and Lymphoma Society told me that you don't get CAR T-Cell Immunotherapy if you don't have active disease.  I even contacted Dana Farber and they said the same thing to me.  So in a way I was relieved I won't get it very soon. 

     

    But how do I know that it is accepted treatment, but the insurance is lagging behind the research and information?  I am not a doctor, but I can see perhaps it's best to wait until you have active disease (but what if it doesn't recur?!! Or what if it starts growing too fast by time they can make the treatment?!!).  I don't know what to think at this moment.

    Any advice would be appreciated.  Has anyone else asked their oncologist my question about CAR-T Cell Immunotherapy?  Can it be given while the patient is still in remission?  Will it still work? 

     

    All I know is that the ASH meeting on Dec. 2nd may have new information, but I don't know any of the details?

     

    If anyone knows anything about CAR T-Cell Immunotherapy during remission, please let me know.

     

    Then again, maybe I should side with ShadyGuy....when I need it, it should be improved by then?

     

    Have  good evening,

     

    Debbie

    Anything is believable

    Debbie,

    I had a friend dying of prostate cancer about 6 years ago.  He was treated at a huge "teaching hospital," associated with a medical school. Their cancer center had (has) all sorts of prestigious nationwide oncology certifications and awards.  It is a Level 1 trauma center, and also does SCT and routine organ transplants.

    He was late stage IV and had to go into inpatient for rehab, because all of his blood chemisty was way out of wack. His inpatient time was in the SAME hospital where the cancer center was located. The institution had gone "all digital" for records about two years prior.....

    I went to take him home after a week on the floor, and the discharge nurse and I were talking about his meds and instructions.  I asked how any of that would effect his cancer treatment. She looked at me funny, then at her laptop, and then back at me. She then said, "We have no indication here that he HAS cancer." I told her that he had been treated at her hospital for 13 years for prostate cancer, and that the cancer center was who had him admitted, due to the disease.  True story.

    About 8 months after the 9-11 attacks on the World Trade Center,  the flight school in Florida received renewed visas for the terroists who flew the jets into the Twin Towers to remain in the US. This was from INS.....  The fact would have been hidden, but the Director of the flight school took the visas to the media before the government could deny it.   Story is widely available at all mainstream news agencies.

    max

  • yesyes2
    yesyes2 Member Posts: 591
    Lost Data................

    My husband was an IT manager prior to his retirement.  I did speak to him about the current problem with this site.  If there is one thing he has taught me about maintaining a secure system it's back-up files, back-up files, back-up files.   We back-up files on our desk tops weekly, with the files being sent off site monthly.  If the IT department knew their jobs this would never have happened.  The fact that they couldn't re-establish files covering a three month period shows bad business practices.   I did some EDP auditing in another life and this is also an audit concern.  Just my opinion but they need to give a better expaination than, sorry for the inconveniance.

     

  • Rocquie
    Rocquie Member Posts: 859 Member
    yesyes2 said:

    Lost Data................

    My husband was an IT manager prior to his retirement.  I did speak to him about the current problem with this site.  If there is one thing he has taught me about maintaining a secure system it's back-up files, back-up files, back-up files.   We back-up files on our desk tops weekly, with the files being sent off site monthly.  If the IT department knew their jobs this would never have happened.  The fact that they couldn't re-establish files covering a three month period shows bad business practices.   I did some EDP auditing in another life and this is also an audit concern.  Just my opinion but they need to give a better expaination than, sorry for the inconveniance.

     

    Leslie

    I agree with you, "Sorry for the inconvenience" hasn't cut it for me either. The fact there is a definitive date--10/19/18, indicates to me that was their last system backup. This should not have happened; it is a breach of trust. 

    Rocquie