Forums
5 posts
• Page 1 of 1
Parade magazine article about Penn immunotherapy
Today's edition of Parade Magazine (came in Sunday's newspaper) has an article titled The Mouse That Roared. It is about Lori Alf and her immunotherapy clinical trial that was used on her before a trial on mice. This trial was conducted by Dr. Carl H. June at the University of Pennsylvania. She has been cancer free for two years now. The article is lengthy. Perhaps the Beacon staff knows more about this.
-
brandywine - Name: brandywine
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: May 2013
- Age at diagnosis: 67
Re: Parade magazine article about Penn immunotherapy
It is our understanding that Lori was treated with the Penn CAR T-cell therapy that we described at length in an article last summer:
"CAR T-Cell Therapy For Multiple Myeloma: Promising Signs Of Efficacy," The Myeloma Beacon, June 4, 2015.
It is unfortunate that articles like this so lightly use the word "cure" when it comes to multiple myeloma. Although it is true that Lori has responded well to the Penn treatment, a number of other patients who were given the treatment were not as fortunate -- including frequent forum contribute Jan Stafl (one of our colleagues wrote about Jan's passing last year).
Although the Penn CAR T-cell therapy is promising -- just as the Mayo Clinic measles virus therapy is promising -- few myeloma specialists would call either therapy a "cure".
"CAR T-Cell Therapy For Multiple Myeloma: Promising Signs Of Efficacy," The Myeloma Beacon, June 4, 2015.
It is unfortunate that articles like this so lightly use the word "cure" when it comes to multiple myeloma. Although it is true that Lori has responded well to the Penn treatment, a number of other patients who were given the treatment were not as fortunate -- including frequent forum contribute Jan Stafl (one of our colleagues wrote about Jan's passing last year).
Although the Penn CAR T-cell therapy is promising -- just as the Mayo Clinic measles virus therapy is promising -- few myeloma specialists would call either therapy a "cure".
Re: Parade magazine article about Penn immunotherapy
This article seems to really contradict what I heard as recently as April about the latest results from the Penn study.
All the participants in the Penn study had to have had a stem cell transplant and have relapsed within a year of the transplant. As mentioned in the Beacon article
"patients could only participate in the study if they had previously undergone a stem cell transplant and their disease progressed within a year of the transplant.
"The patient who achieved a stringent complete response during the trial, for example, had previously been treated with 10 different myeloma therapies, and had progressed just six months after their first transplant."
All patients in the Penn study underwent a stem cell transplant prior to the CAR T-cell treatment. One of the measures of the CAR T cell therapy's success would be how many patients in the trial achieved a "remission inversion" – that is, had a longer time to relapse after the transplant during the trial compared to their previous transplant.
What I heard in April is that 2 of the patients treated during the Penn trial achieved remission inversions. Presumably this includes the patient mentioned in the Parade report. But it's also my understanding that both patients who achieved remission inversions have now progressed, but their disease is considered "indolent", and it is responding to additional treatment.
Do not forget that the patient who was described as "cured" in the measles vaccine trial needed radiation therapy to remove a tumor 9 months after being "cured":
https://myelomabeacon.org/forum/mayo-clinic-measles-vaccine-multiple-myeloma-t3287-20.html#p18991
I would hold off thinking anyone was close to being cured in this trial until we hear from one of the doctors at Penn that there is a patient in remission that required no subsequent therapy or we see it in a peer-reviewed paper. Hopefully there is a patient or patients that have remained in a drug-free remission from this therapy.
All the participants in the Penn study had to have had a stem cell transplant and have relapsed within a year of the transplant. As mentioned in the Beacon article
"patients could only participate in the study if they had previously undergone a stem cell transplant and their disease progressed within a year of the transplant.
"The patient who achieved a stringent complete response during the trial, for example, had previously been treated with 10 different myeloma therapies, and had progressed just six months after their first transplant."
All patients in the Penn study underwent a stem cell transplant prior to the CAR T-cell treatment. One of the measures of the CAR T cell therapy's success would be how many patients in the trial achieved a "remission inversion" – that is, had a longer time to relapse after the transplant during the trial compared to their previous transplant.
What I heard in April is that 2 of the patients treated during the Penn trial achieved remission inversions. Presumably this includes the patient mentioned in the Parade report. But it's also my understanding that both patients who achieved remission inversions have now progressed, but their disease is considered "indolent", and it is responding to additional treatment.
Do not forget that the patient who was described as "cured" in the measles vaccine trial needed radiation therapy to remove a tumor 9 months after being "cured":
https://myelomabeacon.org/forum/mayo-clinic-measles-vaccine-multiple-myeloma-t3287-20.html#p18991
I would hold off thinking anyone was close to being cured in this trial until we hear from one of the doctors at Penn that there is a patient in remission that required no subsequent therapy or we see it in a peer-reviewed paper. Hopefully there is a patient or patients that have remained in a drug-free remission from this therapy.
-
Mark11
Re: Parade magazine article about Penn immunotherapy
Unfortunately, this is pretty much the level of accuracy I'd expect from Parade Magazine. It's nice that they're trying to get the word out to a wide audience, but I hope no one has their hopes raised too high too soon.
-
Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Parade magazine article about Penn immunotherapy
Yes articles like the one in Parade lead to much misunderstanding from friends and family who hear about myeloma but don't really understand it . My sister emailed me the next day telling me myeloma can now be cured by a doctor in Pennsylvania and I should go to UPenn and ask for a shot of car T cells. Hmmm, yup, sure wish it was that easy!
-
Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
5 posts
• Page 1 of 1
Return to Treatments & Side Effects