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I don't have to apologize!!!

po18guy
Posts: 984
Joined: Nov 2011

Or edit any comments from the last three months!

That is huge.

Wehavenotimeatall
Posts: 472
Joined: Aug 2017

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

 

Elected Captain 

Evarista
Posts: 249
Joined: May 2017

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
Posts: 984
Joined: Nov 2011

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

DJS628
Posts: 47
Joined: Mar 2018

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
Posts: 984
Joined: Nov 2011

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
Posts: 43
Joined: Apr 2017

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

PeprmntPat55's picture
PeprmntPat55
Posts: 52
Joined: Aug 2016

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
Posts: 984
Joined: Nov 2011

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!

PeprmntPat55's picture
PeprmntPat55
Posts: 52
Joined: Aug 2016

Well, I wasn't that young in the 80's. And young is a relative term :-)  But I do remember being told that computers would make our lives more efficient. Hogwash. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3228
Joined: May 2012

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

max

Evarista
Posts: 249
Joined: May 2017

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3228
Joined: May 2012

Good one !!

Sal0101's picture
Sal0101
Posts: 123
Joined: Sep 2015

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

DJS628
Posts: 47
Joined: Mar 2018

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3228
Joined: May 2012

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

Sal0101's picture
Sal0101
Posts: 123
Joined: Sep 2015

I’m a bit of a stalker I guess.  It’s always refreshing to read posts from the old gang, and if I can add any encouragement to the new gang I’d be happy to. 

A short, time lapse of my situation  is: Sept. 2015 aggressive DLBCL. R-Chop + IV methotrexate.  Remission Feb. 2016.  Relapse July 2016. R-ICE then auto SCT Sept 2016. 

Remission 2+ years.  I’ve had my issues since the SCT (good and bad) pneumonia x2, lung issues, stomach/bowels issues, shingles, trip to Sicily, sons wedding, outings with my daughter, and my first grandchild expected in June! Life is good!  

That still doesn’t stop me everyday from worrying about another relapse which is why I like to Read about new and upcoming research.  Of course I rely on people much smarter than me for that, which is why this site and others are important. Let’s get the conversations back up and running. 

Sharon

 

 

 

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3228
Joined: May 2012

I'm in !   Had daughter marry year ago November.  I had prostate cancer since you were regular, but that is apparently cured via surgery.  I get an annual recheck this month.

Watch this YouTube the Stacy Lawrence hit Time Marches on.  To open, highlight the link, RIGHT click, and then press "Go to......"

https://www.youtube.com/watch?v=t5wUFURYc0g

lindary's picture
lindary
Posts: 624
Joined: Mar 2015

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
Posts: 47
Joined: Mar 2018

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

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3228
Joined: May 2012

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

DJS628
Posts: 47
Joined: Mar 2018

That is just terrible, Max! Being treated for 13 years and no record he had cancer?!!  I would think maybe they had the wrong name for your friend?    Technology is great, huh?

 

And the 9-11 attacks...renewing visas for the terrorists who flew into the twin towers.  There have been so many other similar stories.  Someone released from jail or prison, and they repeat the same awful crime again just days after their release.  The world is getting pretty bad.

 

---Debbie

 

po18guy
Posts: 984
Joined: Nov 2011

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..."

lindary's picture
lindary
Posts: 624
Joined: Mar 2015

It has been about 4 months since my port was removed. There are still times I put my hand where it was and expecting to feel it there. 

po18guy
Posts: 984
Joined: Nov 2011

It seems surreal to be flat chested, if you know what I mean. I was so utterly used to it that it is indeed odd to have it gone.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3228
Joined: May 2012

Po,

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

max

po18guy
Posts: 984
Joined: Nov 2011

Peter Rivera, singer and drummer of Rare Earth: "I ain't got time for sorrow, and I ain't got time for hate, no, no, I'm using up my time for feelin' fine every day..."

From I just want to celebrate.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3228
Joined: May 2012

I went and saw Rare Earth in concert in about 1973.  The lead guitarist was so skinny that when he stood sideways you couldn't see him on the stage.  Head rush !, thinking back to those times....

po18guy
Posts: 984
Joined: Nov 2011

Still is kinda slim. A really good, realy unknown guitar player. Drummer/lead singer Peter Rivera (easier to pronoucnce that Hoorelbeke) now lives in Spokane. I got a pair of autographed drumsticks from him for $10. At the end of a song, he would toss his sticks out into the audience. At the California Jam in 1974, with 450,000 in the audience, he had to toss dozens of them. BTW, Pete still has the pipes. I bought a classic Rare Eaerth CD and his new CD "It is what it is" from his website.

Bill1958's picture
Bill1958
Posts: 57
Joined: Feb 2018

and so true po18guy.  And really leaving no time for sorrow and hate, is a good way to get rid of them.  And it adds time for much better things.  Cool, thanks for the words!

DJS628
Posts: 47
Joined: Mar 2018

Max,

 

I hope you aren't telling Po that he will soon have his port back in and have to have more treatment?  Let's be nice and support each other.

---Debbie

po18guy
Posts: 984
Joined: Nov 2011

I am certain that was not his sentiment. Howeer, I do consider myself "between cancers" due to my history. Maybe not with this new super-immune system I have, but you never know.

DJS628
Posts: 47
Joined: Mar 2018

Po,

 

Maybe by now you have bionic powers, or rather, a bionic immune system?  Do you remember "The Bionic Woman?"  Heh-heh!  Here's to you!

 

---Debbie

po18guy
Posts: 984
Joined: Nov 2011

Not close - only "closer"...but after 6 millions dollars has been invested in my sorry corpse, and the ravages of time have taken their toll, my pecs are looking less and less like Steve's and more and more like Lindsay Wagner's.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3228
Joined: May 2012

I'm more of a Mama June/Honey Booboo look in the midriff, although skinny everywhere else.  I had a Neil Patrick Harris build my whole life, until the "Dad Bod" years caught up with me.

Sorry, if those are mental images you never wanted to ponder !

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3228
Joined: May 2012

Debbie,

My comment was a humorous one to Po's comment above that he was not currently having to apologize or avoid the censors, due to the huge data loss....

For some reason my comment did not situate directly under his comment, which it should do any time you click on the "Reply" function of someone's post.  But, I guess if three months' data can drift off, so can an individual reply.  Sorry if there was any ambiguity.

max

po18guy
Posts: 984
Joined: Nov 2011

...at apologizing. There are times that my warped sense of humor is not appreciated. There are times when something may be taken wrongly. There are times when i'm just plain rude.

Oh, for anyone with a similar sense of humor, here is a cover of one of Elvis' songs that is a memorable version.

https://www.youtube.com/watch?v=sJKg4TXf6PQ

 

 

Wisteria83
Posts: 162
Joined: Feb 2017

Thanks for the link...that was freakin' hilarious.  Miss Sam.  He was...unique.

DJS628
Posts: 47
Joined: Mar 2018

Max,

 

Thanks for clarifying that one!  Yeah, Po posted he was full of joy, having his port removed, then I saw your post about his joy will be short-lived.  My immediate thought: that was NOT very nice! So I had to ask eventhough I thought, nah, he wouldn't mean that, would he?  How cruel!

 

Have a good day!  It's snowing here! I thought spring was coming soon?  Looking pretty out there!

 

---Debbie

 

yesyes2
Posts: 581
Joined: Jul 2009

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's picture
Rocquie
Posts: 828
Joined: Mar 2013

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

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3228
Joined: May 2012

Massive, massive breaches at Facebook, Amazon, Discover, AT&T, the Social Security Administration.  

"Our improved, digital world."   

po18guy
Posts: 984
Joined: Nov 2011

Joy always returns, but steroids (now for 3 1/2 years) do their best to destreoy it. A necessary evil, they are. True medical progress will be made once a reasonable, less toxic alternative to steroids is formulated. 

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