I don't have to apologize!!!

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.

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.

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?

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

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

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

Po,

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

max

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

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 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.

 

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