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CAR T-Cell Immunotherapy Information Needed

DJS628
Posts: 48
Joined: Mar 2018

Hello Everyone,

 

I started a discussion on CAR T-Cell Immunotherapy treatment before the big outage.  I need to know if it can be given while you are in remission or only if you have actual active disease?

I was diagnosed with Diffuse Large B-Cell Lymphoma, stage 1, localized disease (right inguinal lymph node) in Sept. 2015.  I had the standard treatment of 3 rounds of R-Chop 21 days apart, followed by 15 radiation treatments in Jan. 2016.

I was in remission for almost 2 years (was told if it does come back, it usually comes back during the first 2 years).  I had a recurrence in July 2017, this time in the left inguinal lymph node.  That time, I received 3 rounds of R-Chop 21 days apart.  Then I had BEAM conditioning treatment in Dec. 2017, followed by an autologous stem cell transplant in Jan. 2018. 

I had my second relapse in Sept. 2018, close to 9 months after my transplant.  This time, it was almost in the same location as in July.

 

Both oncologists (my home town one and the one that did the transplant) believe I need the CAR T-Cell Immunotherapy soon, but my insurance denied it since I do not have active disease.  When you read up on the treatment (Kymria and Yescarta), it says it's indicated for patients who have had a recurrence or refractive disease or after failing two earlier treatments. 

 

Both oncologists say I have a very high chance of recurrence since I've had the treatments I've had and since I had a recurrence so soon after my transplant. 

 

If anyone knows the answer or can help me understand, please do so.  I do know that when it was under clinical trials, you couldn't have treatment if you were in remission.  But now, it's FDA approved, so I need to know if it's still the case (that you have to have active disease).

 

For now, I am going to be closely monitored in case of recurrence.  I'll have an ultra sound on the 15th to check the site it was at in Sept., then lab work and the oncologist will check my lymph nodes.  A "Watch and wait" thing.

 

I sure wish they'd come up with a cure for all cancers! 

 

Thanks for reading,

 

Debbie

 

P.S.

September is Lymphoma Awareness Month (when I was first diagnosed and when the last recurrence happened--uggg!).

 

P.S.P.S.

Are there any monitors on this site who are oncologists that chime in on some discussions?

 

 

po18guy
Posts: 1011
Joined: Nov 2011

That there is precious little data out there. On another forum, a wife is posting regarding her husband's experience on day 3 of CAR-T (ZUMA 3). There is virtually zero track record against her husband's leukemia. The further one's journey deviates from the 'treat it and forget it' course, the blurrier and less distinct everything becomes.  Sometimes, we must simply accept our new role as trailblazers.

There is substantial clear evidence that CAR-T can be effective, as it is expensive and many insurance companies are paying for it. As to insurance denials, doctors possess the needed experience in filing effective appeals to such decisions. 

DJS628
Posts: 48
Joined: Mar 2018

Hi Po.

 

Yes, or rather, no....there isn't enough information on CAR T-Cell Immunotherapy.  I hope those who receive this treatment are successful trailblazers. 

 

What did you mean by "zero track record against her husband's leukemia?" 

From reading my denial from my insurance company, I think they didn't appeal the first decision; they just put in another referral.  But if no one can tell me the effectiveness while in remission, I am ok with the decision for now.

 

---Debbie

ShadyGuy
Posts: 428
Joined: Jan 2017

In my opinion (everybody has one) as far as ethics and legal issues go, your physician would be free to prescribe CAR-T. The real challenge would be getting an insurance company or even Medicare to pay for the procedure for someone who is in remission. As Po said before the crash, there are degrees of remission. Is the cancer gone or still present and just inactive? Best of luck and good wishes as you proceed. 

DJS628
Posts: 48
Joined: Mar 2018

Hi Shady,

 

I wish someone had the answer!  My town oncologist wrote to me:  "every doctor that knows your case agree you need CAR T-Cell Immunotherpy."  I'm not sure who all these doctors are?!!  I know he is one of them, and then another oncologist who knew me/treated me when I got my transplant agrees.

 

There is no information out there (that I know of?) about the effectiveness during remission.  I'd like to know if your t cells would keep working like they are supposed to so that when/if the cancer comes back, they would attack them? 

 

Next Friday I will have an ultra-sound on the area where it relapsed last.  Hopefully, we will know what that spot is doing now.  I'm in limbo.....not really wanting to go through rough treatment again, but also scared of how it may be if I wait until it does return.  Then I go into denial---maybe it won't come back?

 

Oh, my!

 

Thank you for the best wishes; I wish the same for you!

 

Good night!

 

---Debbie

po18guy
Posts: 1011
Joined: Nov 2011

A 13 minute video from Hematology Times, featuring Dr Carl June:

https://www.youtube.com/watch?v=8PC1H1l5gHM

dewdrs
Posts: 5
Joined: Feb 2019

po18guy,

Confirms a lot of what I have previously read but in one video short and sweet for easy consumption!

dewdrs

DJS628
Posts: 48
Joined: Mar 2018

Po,

 

That was a very informative video; thank you for sharing it.

I heard you may be snowed in?  How much snow do you have?    I love the snow!  It's pretty, but it's too bad it doesn't stay off the streets!  Ugg!  Be careful out there and stay warm!

 

---Debbie

 

po18guy
Posts: 1011
Joined: Nov 2011

You are very welcome. We are all on the learning curve here. 6 months from now, doctor will probably have to make a new video, due to changes and discoveries. Speaking of learning curves, we have been taking the curves rather cafefully. This morning it was 11" and we picked up another inch this evening, so we are sitting at one foot.

DJS628
Posts: 48
Joined: Mar 2018

Hi Po.

 

Yeah, that is great that they keep making improvements, coming up with new treatments and technology and all that stuff.  I am sure you are right about them having to make a new video in 6 months...maybe sooner?  Hmm?  Will watch that video again soon, along with another one someone sent me off the LLS site.  There is more for me to read on the LLS site, too.

 

Oh, wow!  A foot of snow in Seattle?!!  I remember it snowed Christmas eve. (just half an inch maybe?) and watching people trying to drive up a hill and sliding back down.  That was from a window at Pete's Gross House.  People aren't used to driving in the snow there..and the hills!  Stay in and stay warm when you can.  While out and about, be careful and watch out for the other guy!

We got about 6 inches of snow today.  My back is saying "Ouch!" from shoveling it, but it felt good to be able to say that I was able to do it this year.

Have a good week and may the snow stop falling soon.  Spring!  Where are you?

 

---Debbie

ShadyGuy
Posts: 428
Joined: Jan 2017

Thsts not really so much snow. But in a massive urban area like Seattle I can see how it might wreak havok.

https://www.weather.gov/crh/snowfall

DJS628
Posts: 48
Joined: Mar 2018

Shady,

 

You don't think a foot of snow is very much?!!  It's way too much in Seattle since they aren't used to it and there are so many steep hills to drive on.

 

You must live where you get a lot of snow? 

 

---Debbie

ShadyGuy
Posts: 428
Joined: Jan 2017

We got about 10 feet per year. In 1993 a friend came to stay with us because he “lost” his house in North Dakota. They could not even find the road it was on. In the small town of Cleveland NY the lake effect snow was so deep my sister had to enter and leave her house through a second floor window. Her car was buried for two months. When I lived in Nova Scotia we had a hatch on the roof so we could shovel the snow off. No, in absolute terms 11 inches isn’t much snow at all. In Seattle there are lots of “snowflakes“ all year. They run the place. I guess in their minds 11” of snow is just another thing that makes them “special”. Bright side is the homeless can build igloos to live in and Starbucks has home delivery so they should do well. I live in much less snowy places now but we have had two snowfalls over 1 foot this year. Fortunately it melted quickly which is what I expect will happen in Seattle. Rain tends to do that.

yesyes2
Posts: 590
Joined: Jul 2009

 Shady I like what you have to say usually.  However I find you calling people from Seattle "snowflakes" derogatory, insulting and upsetting.  When not refuring to actual snow it's not usually used in a positive or meaningful way.  It's a political hotbutton word now days. 

For reference I do not live in Seattle, never have, but moved from Minnesota in 1973 to San Francisco.  A few inchs of snow there can shut the city down and create hazardes road conditions.  West coast people do not have snow tires or supplies for snow.  Your lucky if you have gloves.  San Francisco has a lot of old homes that also don't have central heating systems but rely on space heaters of gas ranges.  Anyway the above remark was unappreciated.  What has Seattle ever done to you?  Shady I'm not in a sparring match just couldn't let the remark go.

 

 

 

 

  

 

 

 

 

 

 

 

 

 

 

 

 

 

 

DJS628
Posts: 48
Joined: Mar 2018

Shady,

So you are used to lots of snow.  It makes a big difference if the area gets a lot usually or not.  Seattle isn't used to a lot of snow, and there are very steep hills every where.  It makes things very difficult to get around.  I hope it warms up and it melts quickly without a lot of flooding for people.

 

When an area gets an unusual snow storm like that, some times the town has to "shut down" for a while.  Schools, stores, etc.  You're lucky you are used to a lot of snow and have the means to drive in it?

 

Not sure about your comment about flakes all year.  It does get a lot of rain drops instead!

 

And the poor homeless!  I didn't think of them when Po said there was a foot of snow on the ground.  That would be terrible to have to be out in it like that.  People were finding birds, cats and dogs frozen around here.  I feel so bad for them!  People should know better and bring them inside in this kind of weather.

 

We got up around 46 degrees today, so a lot of our snow melted, thank goodness.  I hope spring comes soon!

 

Good night!

 

---Debbie

ShadyGuy
Posts: 428
Joined: Jan 2017

Yes, in todays jargon, it is a politically incorrect term. The meaning of "snowflake" you refer to is a recent one referring to college students who melt in the face of change or adversity. I was referring to a different meaning. When I was living in Minnesota I would go often to Arizona. The people there would comment that "every winter you people drop in here like snowflakes". My family in Seattle area complain that most of the City officials there are people who "dropped in" from California and "forgot to go home". It struck me as funny - kinda like Minnesota snowflakes in reverse. It was a simple joke not meant to offend. When we went to Florida from Minnesota we were called "Snow birds". I felt that was an insult to birds, especially cranes and warblers. Not so much Turkeys and geese. Sorry to offend you. But I must say you apparently are easy to offend. Don't worry, be happy. Smiiileeeee! I will strive to never offend you again. I agree that this board is no place for politics.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

It is interesting (and rare) to study the history of "Nice."  Historically, politeness was of no relevance to anyone. The observation that some fact or action "offended" someone else would have not even been understood until recent decades; no one would have a clue as to what significance that might pose.  Historical examples are Jesus, who routinely enraged his listeners (I say this as a conservative Christian myself).  Socrates, the father of Western philosopy and political thought, was put to death for his blatant offenses against Greek aristocracy.   Most of the great men of history were crass, abrasive. The women also.  Tolstoy, the Russian writer.  The poet John Milton and a thousand other examples: being "nice" was not a concept they were even aware of.

The regard for "manners" entered Western culture through, and during, Victorian England.  Along with this came the regard for etiquette and respectable behavior.  It was an entirely new view of human interaction. A massive number of academic works recount this, in Victorian England History, which is a major branch of Western history in most university departments.  "Niceness" has of course since become normative throughout Western nations, but much less so throughout the Middle East, Asia, and Africa.

As recently as when I went through college, the "Liberals" were the advocates of Free Speech: they demanded that people be able to say whatever, whenever and wherever they wished.  This was the very definition of freedom and democracy.  It is no accident that the First Amendment came, eh, first.

So too in logic and reasoning: the core of these ancient disciplines was to distinguish valid thinking verses invalid; sound reasoning verses psychosis.  "Attitude" or "liking" something (or not) is still wholly irrelevant and even a distraction in determining whether something is cogent or reasonable.  And, feelings will remain wholly of no significance in formal logic.  It is just that logic has been usurped and displaced by emotions, which are fickel, transient, capricious.  "Offense" itself has become a default blungeoning weapon against anyone whose views differ from the person taking offense; it is itself the ultimate "code word" and "trigger."  I find the adolescent resort to offense offensive myself -- deeply offensive, since it renders the conversation juvenile and insipid.

Reasoning has been turned on its head, and the University today is the least tolerant place in society.  "Offense" today has suppressed many of the greatest minds and scientific accomplishments of the last two centures, because the scientists or writers have since been deemed contrary to currently dictatorial viewpoints.

My view here is that if an opinion is rationally articulated, relevant to the Lymphoma experience, not manifestly UNTRUE and not obscene or vulgar, then it should be welcome.  Adults used to be adults, but that golden age may never return.    I read what I find informative, and avoid those few writers with whom I routinely disagree, and it is a system that works great !  I have never flagged any individual here during my years and 3,000 posts, and my blood pressure stays on a nice, healty plateau.

max

ShadyGuy
Posts: 428
Joined: Jan 2017

Max, maybe its just evolution. Free speech stimulates social evolution in many directions. Thats why universities and dictators are so anti free speech. They like things to move only in a certain direction. Unlike you I am at most agnostic. Still we tend to agree on the issue of free speech. Having traveled for a living and visited over 60 countries I can tell you that our belief in free speech is not universally shared. Its becoming that way here.  I was taken aside in Egypt and told that when I made a statement it was only polite and expected for me say “Allah willing” A phrase that, in Arabic, is used constantly.  You are expected to use that phrase. For example “i am going home tomorrow, Allah willing”. Kinda like “good Lord willing and the creek don’t rise” except its not meant in jest. I won’t bore with any more stories. I think we could have a spirited converstaion but not on here. We could disagree and walk away friends. Remember that race of human/android hybrids on the old Star Wars Next Generation tv series? Their main message was “Resistance is futile, you will comply”. Sound familiar?

Cheers. Now back to cancer. I am having serious issues .....  again.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3328
Joined: May 2012

Shady,

We could disagree and walk away friends.....   We already have, and I am appreciative of such.   

I was a work-study grading papers for a former philosophy professor of mine many decades ago. She was stunningly beautiful and brilliant, but so far to the left that there was nothing, and no one, to her left in her field.   One evening I was turning in some work to her and we got in to a little discussion about the "other elements" among faculty in the department, who were all good friends with me also.  She then volunteered an observation, saying, You have the most skill at having friendships with radically diverse, even incompatable personalities that I have ever witnessed.     She was NOT saying that I pretended or faked stuff around others, but that it was an admirable, esteemable skill that she deeply admired.   I still regard it as one of the highest compliments I've ever received off-the-cuff.    I've been likened to the Diedrich character on Barney Miller, which I agree with, except that it's never made me any money; quite the opposite. 

I listened to a sermon once from a gifted minister.  He said that "you very seldom meet anyone in life who is totally honest, who won't white-lie to get along.  He then added that "...such people are usually somewhat odd-balls, socially not well received. And I have noticed that they are usually very under-employed, even within the clergy."    I went up to him on the way out afterward, and said "You told the story of my life today !"  He got a wry grin and nodded...

Your friend,

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