My dad is in China. He was diagnosed with IgG lambda Stage IIIA multiple myeloma in May. He just finished his 4th cycle of treatment with Velcade, cyclophosphamide, and dexamethasone (VCD)
His specialist recommends that he undergo an autologous stem cell transplant (ASCT), and his stem cell harvest is scheduled for the next month or two.
However, my parents heard from their friend who had a stem cell transplant in 2014. The friend was diagnosed IgD multiple myeloma. He did not have any good from the transplant, but suffered all the side effects.
There is also an opportunity available for CAR T-cell trial in China. We are kind of making a choice: autologous stem cell transplant, or CAR T-cell trial?
Does anyone have any thoughts on the decision that might help us? It would be greatly appreciated.
Below are the results after the 3rd cycle VCD therapy:
Plasma cell percentage down from 30% original, 1% after second therapy, and 0.5% after the third.
IgG level dropped from 78 g/L to current 16.8 g/L.
IFE still positive with IgG lambda.
After this cycle, we are considering going forward with an autologous stem cell transplant. Fingers crossed.
My dad feels good now, but very bad diarrhea after 2nd cycle of treatment. not too much side effect, only loss of appetite during the therapy.
I am translating the medical information from Chinese to English. Might not be very clear.
My father has 1q21 gain from FISH test.
Great thanks to everyone at this forum. We are getting heaps of information and getting encouraged with kind people here.
Kind regards
Wei
Forums
Re: CAR T-cell therapy trial or ASCT?
Hi Wei,
I am not a doctor, so couldn't give advice about your father's treatment plans. I just wanted to say that, as far as I know, to have a CAR T-cell therapy, that would also involve having an autologous stem cell transplant ahead of time. You should check the details of the CAR T-cell therapy clinical trial to verify that though.
Best wishes to you and your father.
I am not a doctor, so couldn't give advice about your father's treatment plans. I just wanted to say that, as far as I know, to have a CAR T-cell therapy, that would also involve having an autologous stem cell transplant ahead of time. You should check the details of the CAR T-cell therapy clinical trial to verify that though.
Best wishes to you and your father.
-
Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: CAR T-cell therapy trial or ASCT?
Hi Wei,
I am not familiar with how therapies are reimbursed in China. I mention that because I do not know if an autologous transplant would be an option for your father at a later time or not.
My initial reaction would be to seriously consider the CAR T-cell trial. It is well established with allogeneic transplant, another form of immunotherapy, that it has the best chance of working early in disease course. A patient is also healthier to deal with the potential side effects when doing the therapy early as opposed to later, after being exposed to long-term drug use and multiple relapses.
Since your father is using cyclophosphamide as part of his induction, he is getting the benefit of alkylator therapy. An autologous transplant is usually a high dose of melphalan, another alkylator.
We do not know what the potential long term side effects of BCMA CAR T-cell therapy are. Based on what I had read, the BCMA CAR T cells can kill all your plasma cells. A healthy functioning immune system needs plasma cells to function properly. I would ask the doctor about that potential side effect and weigh the potential of not having the chance of having a normal functioning immune system versus the chance of having long-term disease control. That is something your family would have to weigh based on what you are told. Based on a study I had read they have some patients that are a year out or so, so they could give you the best idea of how much of an issue that could potentially be.
Best of luck moving forward. Keep us up to date on how things go. I would be very interested in reading the experience of a patient that uses BCMA CAR T cell therapy as part of their initial therapy.
Mark
I am not familiar with how therapies are reimbursed in China. I mention that because I do not know if an autologous transplant would be an option for your father at a later time or not.
My initial reaction would be to seriously consider the CAR T-cell trial. It is well established with allogeneic transplant, another form of immunotherapy, that it has the best chance of working early in disease course. A patient is also healthier to deal with the potential side effects when doing the therapy early as opposed to later, after being exposed to long-term drug use and multiple relapses.
Since your father is using cyclophosphamide as part of his induction, he is getting the benefit of alkylator therapy. An autologous transplant is usually a high dose of melphalan, another alkylator.
We do not know what the potential long term side effects of BCMA CAR T-cell therapy are. Based on what I had read, the BCMA CAR T cells can kill all your plasma cells. A healthy functioning immune system needs plasma cells to function properly. I would ask the doctor about that potential side effect and weigh the potential of not having the chance of having a normal functioning immune system versus the chance of having long-term disease control. That is something your family would have to weigh based on what you are told. Based on a study I had read they have some patients that are a year out or so, so they could give you the best idea of how much of an issue that could potentially be.
Best of luck moving forward. Keep us up to date on how things go. I would be very interested in reading the experience of a patient that uses BCMA CAR T cell therapy as part of their initial therapy.
Mark
-
Mark11
Re: CAR T-cell therapy trial or ASCT?
I am also not a doctor of any kind, but it seems to me that the CAR-T cell therapy is not yet advanced enough in myeloma to warrant choosing it over a stem cell transplant. The stem cell transplant procedure is well established and there are plenty of hospitals with a lot of experience in them. The side effects are very individualized and may be very difficult but may be quite minimal as well. As with any myeloma therapy, there is no guarantee that it will work but it does provide good remissions in many people. The side effects of CAR-T cell therapy can also be very difficult or even life threatening. While the approach is extremely exciting, the results that I've seen have generally not seemed that good yet (although I'd be interested to hear what others have seen in this regard).
Of course, each patient is different and your father may have good reason to want the CAR-T cell therapy. I would be cautious in discarding the stem cell transplant approach, though.
Of course, each patient is different and your father may have good reason to want the CAR-T cell therapy. I would be cautious in discarding the stem cell transplant approach, though.
-
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: CAR T-cell therapy trial or ASCT?
If this is an anti-BCMA CAR T-cell therapy trial, my understanding is that the results with anti-BCMA CAR T-cells have been excellent in terms of the percentage of those responding to the treatment, duration of remission, and limited side effects. There are some study results that have been published recently that you may want to review in making your decision.
-
lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: CAR T-cell therapy trial or ASCT?
Hello Wei,
Before you and your family expend a lot of energy choosing between the two options you've described, you may want to make certain that your father can participate in the CAR T-cell therapy trial.
The reason I suggest doing so is because, as far as I can tell, the only CAR T-cell trials for multiple myeloma patients currently ongoing in China are for heavily pre-treated and/or relapsed patients.
I found four trials in China involving CAR T-cell therapy and including multiple myeloma patients. I've listed them below and included key text from the trial inclusion criteria:
https://clinicaltrials.gov/ct2/show/NCT01886976
For "Male and female subjects with CD138 positive multiple myeloma in patients with no available curative treatment options (such as autologous or allogeneic SCT) who have limited prognosis (several months to < 2 year survival) with currently available therapies will be enrolled."
https://clinicaltrials.gov/ct2/show/NCT02954445
Patients must have "relapsed or refractory disease". Also, "According to current traditional therapies, there must be no available alternative curative therapies and subjects must be either ineligible for allogeneic stem cell transplant (SCT), have refused SCT, or have disease activity that prohibits SCT at this time."
https://clinicaltrials.gov/ct2/show/NCT03196414
For "patients with no available curative treatment options (such as autologous or allogeneic SCT); relapsed and/or refractory multiple myeloma; relapsed after prior autologous or allogeneic SCT"
https://clinicaltrials.gov/ct2/show/NCT03093168
For "Patients [who have] previously received at least 3 different prior treatment regimens for multiple myeloma, including alkylating agent, protein inhibitors, and immunomodulator, and have disease progression in the past 60 days."
If the CAR T-cell trial your father would be eligible for is not one of these four trials, I think many people here would appreciate your sharing more information about the trial.
Cheers!
Before you and your family expend a lot of energy choosing between the two options you've described, you may want to make certain that your father can participate in the CAR T-cell therapy trial.
The reason I suggest doing so is because, as far as I can tell, the only CAR T-cell trials for multiple myeloma patients currently ongoing in China are for heavily pre-treated and/or relapsed patients.
I found four trials in China involving CAR T-cell therapy and including multiple myeloma patients. I've listed them below and included key text from the trial inclusion criteria:
https://clinicaltrials.gov/ct2/show/NCT01886976
For "Male and female subjects with CD138 positive multiple myeloma in patients with no available curative treatment options (such as autologous or allogeneic SCT) who have limited prognosis (several months to < 2 year survival) with currently available therapies will be enrolled."
https://clinicaltrials.gov/ct2/show/NCT02954445
Patients must have "relapsed or refractory disease". Also, "According to current traditional therapies, there must be no available alternative curative therapies and subjects must be either ineligible for allogeneic stem cell transplant (SCT), have refused SCT, or have disease activity that prohibits SCT at this time."
https://clinicaltrials.gov/ct2/show/NCT03196414
For "patients with no available curative treatment options (such as autologous or allogeneic SCT); relapsed and/or refractory multiple myeloma; relapsed after prior autologous or allogeneic SCT"
https://clinicaltrials.gov/ct2/show/NCT03093168
For "Patients [who have] previously received at least 3 different prior treatment regimens for multiple myeloma, including alkylating agent, protein inhibitors, and immunomodulator, and have disease progression in the past 60 days."
If the CAR T-cell trial your father would be eligible for is not one of these four trials, I think many people here would appreciate your sharing more information about the trial.
Cheers!
Re: CAR T-cell therapy trial or ASCT?
There was a short news story that came out today about a U.S. patient that is participating in the third CAR T-cell therapy trial that Ian listed above (link to trial information). Here's a reference and link to the article:
"Jiangsu hospital cures US man’s cancer with experimental cell therapy", Global Times, Sep 3, 2017 (link to full text of article)
And here's a few key paragraphs:
"A hospital in East China's Jiangsu Province recently cured a US patient of a form of cancer that starts in the bone marrow, marking the first time a foreign patient has received this particular form of experimental therapy in a Chinese institution.
Californian Craig Chase, 56, came to China on July 19 to receive CAR-T treatment for his myeloma cancer at Nanjing's Jiangsu Province Hospital and was discharged in late August, according to a Wednesday report from provincial news portal jschina.com.cn ...
Chase learned about the clinical trial of the experimental treatment in June and decided to volunteer after receiving conventional treatment for his cancer for three years to no avail, the report read.
The hospital will continue to track his condition even while he is in the US, the report said, explaining that Chase is the sixth patient to be successfully treated with CAR-T therapy in the hospital ...
Chen Lijuan, one of the doctors that treated Chase, said that accepting the treatment was very brave as CAR-T therapy is still in the clinical stage and is not yet mature.
Although the news article published today says that the patient was 'cured' by the CAR T-cell therapy, the original Chinese-language article with information about the case does not use that word. This link has an English translation of the article.
Here are key excerpts from the translation of the original Chinese-language article mentioned in the above article:
"Craig Chase, 56, was diagnosed with refractory myeloma in July 2014 and received 5 chemotherapy at a local cancer hospital, but the treatment was not satisfactory. He then went to the University of California, San Francisco, affiliated hospital to make a more intensive chemotherapy, but the examination showed that his disease further deteriorated. Mr. Chase, who did not want to give up on this, [learned in June 2017 from reports from the ASCO 2017 meeting] that China is carrying out the treatment of multiple myeloma cell therapy, Mr. Chase and His attending physician found a Chinese staff member who expressed the desire to try this new treatment method. The staff member then contacted Professor Li Jianyong, Director of Hematology Department of Jiangsu Provincial People's Hospital. "If he is willing to participate in experimental treatment, welcome him to come to China!" Professor Li Jianyong immediately arranged hematology more than myeloma treatment group of Chen Lijuan chief physician and Chase to contact.
On July 19, Mr. Chase and his wife first came to China, and after admission to the Hematology Hospital of Jiangsu Provincial People's Hospital, Mr. Chase began receiving cell collection. Hospital experts together with the cooperation of the drug company will collect good cells, through a special treatment for Mr. Chase collected T cells fitted with targeted antibodies ...
On August 11, Mr. Chase re-admitted to the hospital to receive CAR-T cell transfusion therapy. The first week after cell transfusion, Mr. Chase's physical condition was basically stable. August 16, Mr. Chase appeared three days of high fever. August 18 at noon on Friday, Chase dyspnea, decreased pulse, heart rate, body more joint pain, blood tests suggest that the cytokines are normal when the 3000 times. "In fact, the cytokine storm is a kind of help signal sent by the immune system, the purpose is to let the immune system all of a sudden firepower to attack the tumor cells, but also left a lot of joint damage, such as patients will The occurrence of similar to septic shock or vascular injury, inflammation, fever, body pain, etc., very dangerous. "Professor Chen Lijuan said.
Professor Li Jianyong several times with the medical group to communicate: "to ensure the safety of patients under the premise of life, try not to terminate CAR-T treatment." Professor Chen Lijuan led Xu Ji deputy chief physician, and Zhu Han doctors and other medical staff, The hospital, 24 hours to guard Mr. Chase, for his various symptomatic emergency treatment, until August 21 Mr. Chase's condition gradually stabilized. After the life and death game Mr. Chase, weight loss of 10 pounds, but not change the humor, see Professor Chen Lijuan in order to treat his swollen ankle, specially from the Provincial Hospital to buy herbs to help him dress, he will joke Said: "Herbal smell smells like an appetizer for Italian cuisine."
This link is to the original Chinese-language article that is the source of the translated excerpt above:
http://jsnews.jschina.com.cn/shms/201709/t20170903_1005034.shtml
"Jiangsu hospital cures US man’s cancer with experimental cell therapy", Global Times, Sep 3, 2017 (link to full text of article)
And here's a few key paragraphs:
"A hospital in East China's Jiangsu Province recently cured a US patient of a form of cancer that starts in the bone marrow, marking the first time a foreign patient has received this particular form of experimental therapy in a Chinese institution.
Californian Craig Chase, 56, came to China on July 19 to receive CAR-T treatment for his myeloma cancer at Nanjing's Jiangsu Province Hospital and was discharged in late August, according to a Wednesday report from provincial news portal jschina.com.cn ...
Chase learned about the clinical trial of the experimental treatment in June and decided to volunteer after receiving conventional treatment for his cancer for three years to no avail, the report read.
The hospital will continue to track his condition even while he is in the US, the report said, explaining that Chase is the sixth patient to be successfully treated with CAR-T therapy in the hospital ...
Chen Lijuan, one of the doctors that treated Chase, said that accepting the treatment was very brave as CAR-T therapy is still in the clinical stage and is not yet mature.
Although the news article published today says that the patient was 'cured' by the CAR T-cell therapy, the original Chinese-language article with information about the case does not use that word. This link has an English translation of the article.
Here are key excerpts from the translation of the original Chinese-language article mentioned in the above article:
"Craig Chase, 56, was diagnosed with refractory myeloma in July 2014 and received 5 chemotherapy at a local cancer hospital, but the treatment was not satisfactory. He then went to the University of California, San Francisco, affiliated hospital to make a more intensive chemotherapy, but the examination showed that his disease further deteriorated. Mr. Chase, who did not want to give up on this, [learned in June 2017 from reports from the ASCO 2017 meeting] that China is carrying out the treatment of multiple myeloma cell therapy, Mr. Chase and His attending physician found a Chinese staff member who expressed the desire to try this new treatment method. The staff member then contacted Professor Li Jianyong, Director of Hematology Department of Jiangsu Provincial People's Hospital. "If he is willing to participate in experimental treatment, welcome him to come to China!" Professor Li Jianyong immediately arranged hematology more than myeloma treatment group of Chen Lijuan chief physician and Chase to contact.
On July 19, Mr. Chase and his wife first came to China, and after admission to the Hematology Hospital of Jiangsu Provincial People's Hospital, Mr. Chase began receiving cell collection. Hospital experts together with the cooperation of the drug company will collect good cells, through a special treatment for Mr. Chase collected T cells fitted with targeted antibodies ...
On August 11, Mr. Chase re-admitted to the hospital to receive CAR-T cell transfusion therapy. The first week after cell transfusion, Mr. Chase's physical condition was basically stable. August 16, Mr. Chase appeared three days of high fever. August 18 at noon on Friday, Chase dyspnea, decreased pulse, heart rate, body more joint pain, blood tests suggest that the cytokines are normal when the 3000 times. "In fact, the cytokine storm is a kind of help signal sent by the immune system, the purpose is to let the immune system all of a sudden firepower to attack the tumor cells, but also left a lot of joint damage, such as patients will The occurrence of similar to septic shock or vascular injury, inflammation, fever, body pain, etc., very dangerous. "Professor Chen Lijuan said.
Professor Li Jianyong several times with the medical group to communicate: "to ensure the safety of patients under the premise of life, try not to terminate CAR-T treatment." Professor Chen Lijuan led Xu Ji deputy chief physician, and Zhu Han doctors and other medical staff, The hospital, 24 hours to guard Mr. Chase, for his various symptomatic emergency treatment, until August 21 Mr. Chase's condition gradually stabilized. After the life and death game Mr. Chase, weight loss of 10 pounds, but not change the humor, see Professor Chen Lijuan in order to treat his swollen ankle, specially from the Provincial Hospital to buy herbs to help him dress, he will joke Said: "Herbal smell smells like an appetizer for Italian cuisine."
This link is to the original Chinese-language article that is the source of the translated excerpt above:
http://jsnews.jschina.com.cn/shms/201709/t20170903_1005034.shtml
-
JimNY
Re: CAR T-cell therapy trial or ASCT?
I am on the (long) waiting list at the Mayo Clinic for a CAR T-cell trial. I understand that early results are very promising, but like the patient's experience in China, it is a very intense treatment with some needing ICU care.
-
jjc
Re: CAR T-cell therapy trial or ASCT?
When I was diagnosed in 1995 with Stage 3 multiple myeloma, my choice was an autologous stem cell transplant (actually tandem) or an allogeneic stem cell transplant with my compatible sibling. I felt at that time, given the high mortality rate from the allo, that I'd do the auto simply because the auto was easier and safer.
The Chinese presented some great results (albeit few patients) at the recent June 2017 ASCO. My own opinion is that with all the other treatment options available, I'd choose these various options, including auto, first before the CAR T-cell therapy until there's more experience understanding longer-term progression free survival with CAR-T therapy and managing side-effects (cytokine storm) with CAR-T.
By the way, my remission from the autologous option only lasted 1.5 years, while another friend had an auto a year later and hasn't had any treatment since. Yes, I did ultimately have the allogeneic transplant in 1998. Quite difficult.
Jack
The Chinese presented some great results (albeit few patients) at the recent June 2017 ASCO. My own opinion is that with all the other treatment options available, I'd choose these various options, including auto, first before the CAR T-cell therapy until there's more experience understanding longer-term progression free survival with CAR-T therapy and managing side-effects (cytokine storm) with CAR-T.
By the way, my remission from the autologous option only lasted 1.5 years, while another friend had an auto a year later and hasn't had any treatment since. Yes, I did ultimately have the allogeneic transplant in 1998. Quite difficult.
Jack
-
Jack Aiello
Re: CAR T-cell therapy trial or ASCT?
Great thanks with everyone here.
I have talked with the doctor in the clinical trial. it is only for the relapsed patient.
I also had some discussions with the patients who had the trial more than a year.
It seems that the results are very encouraging and the side effect is manageable.
After one year, they are still in stringent complete response (sCR).
I think we will still go through the stem cell harvest, but may not do the transplant now, may wait to see how the CAR T-cell therapy goes.
I think the CAR T-cell therapy will open a new page of multiple myeloma treatment.
I have talked with the doctor in the clinical trial. it is only for the relapsed patient.
I also had some discussions with the patients who had the trial more than a year.
It seems that the results are very encouraging and the side effect is manageable.
After one year, they are still in stringent complete response (sCR).
I think we will still go through the stem cell harvest, but may not do the transplant now, may wait to see how the CAR T-cell therapy goes.
I think the CAR T-cell therapy will open a new page of multiple myeloma treatment.
14 posts
• Page 1 of 2 • 1, 2
Return to Treatments & Side Effects