Thank you for posting this video. In addition to the part about the measles trial in treating multiple myeloma, the section on the altered T-cell treatment is what is now being trialed at the Abramson Cancer Center in Philadelphia with people with myeloma. It is very early in the myeloma trial. I think that only 4 people, maybe 5 now, have received this treatment.
All of this is very exciting to me. It just blows my mind how these tiny particles in our bodies and the viruses that are being manipulated may possibly be the path to curing many cancers.
Nancy in Phila
Forums
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Mayo Clinic measles vaccine study
A comment on the HBO piece. While I found the look at the personal struggles of the patients / families moving, a piece like this in my opinion should have experts in the field who are not directly involved with the therapies being discussed.
A good example of why you have to look at these type of shows with some skepticism is to note what Carl June states at around 29:50 that HIV allows CTL019 to "easily" distinguish between leukemia cells and normal cells. CTL019 destroys all CD19+ cells, healthy or cancerous. From a peer reviewed journal article that Dr. June is co-author of from 2014:
If CTL019 could "easily" distinguish cancer cells from healthy cells, that would not happen. I also have never heard a doctor refer to healthy B cells that help fight infection as a "foe".
CAR T cells are a potentially great therapy, as they show tremendous responses for relapsed ALL patients. I for one hope they make more strides with CAR T cells and other immunotherapies, as I would prefer to use those types of therapies compared to drugs if I should relapse. I know from personal experience the great benefits that immunotherapy can provide a blood cancer patient.
That said, I think pieces like this should at least mention the known downsides / challenges of the therapies as well as the benefits.
Mark
A good example of why you have to look at these type of shows with some skepticism is to note what Carl June states at around 29:50 that HIV allows CTL019 to "easily" distinguish between leukemia cells and normal cells. CTL019 destroys all CD19+ cells, healthy or cancerous. From a peer reviewed journal article that Dr. June is co-author of from 2014:
"B-cell aplasia is an expected on-target result of CD19-directed therapies and has served as useful surrogate to determine the persistence and effectiveness of CD19-directed CAR T cells. Fortunately, B-cell aplasia is a manageable disorder; patients may be infused with γ-globulin as replacement therapy, though this could become an expensive and difficult treatment to implement across all diseases that may be eventually treated with CAR T cells. Persistent B-cell aplasia could also result in an increased risk of infection even with replacement therapy. In an ideal setting, the CAR T cells would persist long enough to mediate definitive control of disease but then allow for recovery of normal B-cell and plasma cell recovery such that patients could be revaccinated."
Source: MV Maus et al, "Antibody-modified T cells: CARs take the front seat for hematologic malignancies," Blood, Apr 24, 2014 (link to full text)
If CTL019 could "easily" distinguish cancer cells from healthy cells, that would not happen. I also have never heard a doctor refer to healthy B cells that help fight infection as a "foe".
CAR T cells are a potentially great therapy, as they show tremendous responses for relapsed ALL patients. I for one hope they make more strides with CAR T cells and other immunotherapies, as I would prefer to use those types of therapies compared to drugs if I should relapse. I know from personal experience the great benefits that immunotherapy can provide a blood cancer patient.
That said, I think pieces like this should at least mention the known downsides / challenges of the therapies as well as the benefits.
Mark
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Mark11
Re: Mayo Clinic measles vaccine study
They never showed how the 2 patients made out with the measles vaccine at Mayo. We were at Penn today, talking to someone during my daughter's appointment, who said a patient went to Mayo for the measles therapy but it did not work.
I have also heard about the CAR T-cell therapy not working for some.
They are working very hard to find therapies that will cure, but myeloma is such a complex disease. Still it keeps us hopeful.
I have also heard about the CAR T-cell therapy not working for some.
They are working very hard to find therapies that will cure, but myeloma is such a complex disease. Still it keeps us hopeful.
Re: Mayo Clinic measles vaccine study
Hi TerriJ,
You wrote, "I have also heard about the CAR T-cell therapy not working for some."
No therapy works for every patient. I have been putting up some links in another thread when I see them with respect to CAR T cells. In the pediatric ALL patients, there are 16 out of 30 that remain in remission from CTL019 as of the time of publication of last years ASH abstracts. As I mentioned in the thread about CAR T cells,
"At first, the treatment provoked 27 complete remissions, but that number is now down to 16 for various reasons that are detailed in the abstract."
Great research, and the therapy appears to be a successful "bridge" to potentially curative allo transplant for ALL patients.
I doubt there will be a "one shot miracle cure" for myeloma patients any time soon. Blood cancer patients that are cured currently are cured with combination chemotherapy or combination chemotherapy combined with immunotherapy that is applied as part of their upfront therapy. The goal is to cure more patients and that will likely happen slowly as they better utilize the therapies we have and combine them with new therapies moving forward.
In myeloma, in my opinion, we have just taken the first step. We can now get a good percentage of patients into CR. Now comes the hard part - finding a therapy/combination of therapies to keep myeloma patients in CR. The current "standard of care" strategy of lenalidomide [Revlimid] "until disease progression" needs major improvement, in my opinion.
Mark
You wrote, "I have also heard about the CAR T-cell therapy not working for some."
No therapy works for every patient. I have been putting up some links in another thread when I see them with respect to CAR T cells. In the pediatric ALL patients, there are 16 out of 30 that remain in remission from CTL019 as of the time of publication of last years ASH abstracts. As I mentioned in the thread about CAR T cells,
"At first, the treatment provoked 27 complete remissions, but that number is now down to 16 for various reasons that are detailed in the abstract."
Great research, and the therapy appears to be a successful "bridge" to potentially curative allo transplant for ALL patients.
I doubt there will be a "one shot miracle cure" for myeloma patients any time soon. Blood cancer patients that are cured currently are cured with combination chemotherapy or combination chemotherapy combined with immunotherapy that is applied as part of their upfront therapy. The goal is to cure more patients and that will likely happen slowly as they better utilize the therapies we have and combine them with new therapies moving forward.
In myeloma, in my opinion, we have just taken the first step. We can now get a good percentage of patients into CR. Now comes the hard part - finding a therapy/combination of therapies to keep myeloma patients in CR. The current "standard of care" strategy of lenalidomide [Revlimid] "until disease progression" needs major improvement, in my opinion.
Mark
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Mark11
Re: Mayo Clinic measles vaccine study
I have enjoyed reading all these posts and find that I have an urgent question for all you "experts" out there! I had an allo BMT almost 2 years ago, and have been doing very well although still have minimal residual disease. I've been taking pomalyst by itself to stimulate the immune system. Now it is time to re-immunize,and I'm wondering whether I should forego the measles vaccination "just in case". My doctor thinks protection from measles is of greater concern right now. I have to decide within the next couple of weeks! Any advice/thoughts would be greatly appreciated!
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Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Mayo Clinic measles vaccine study
Hi Dana,
A few things to consider:
You can't get just a measles vaccine. You have to get a 3-way MMR (Measles/Mumps/Rubella) vaccine.
Why not get your titers checked for MMR to see if you even need to get vaccinated (it's not a given that any earlier immunity has been eliminated). A set of MMR titers is a pretty quick and cheap test to have done.
Also, at least one organization recommends being off immunosuppressive treatment for a year before getting re-vaccinated. See: https://www.fredhutch.org/en/treatment/long-term-follow-up/FAQs/vaccination.html
"...It is also important that patients NOT receive the measles, mumps, and rubella (MMR) vaccine until two years post-transplant and at least one year after discontinuing immunosuppressive therapy".
To be clear, Pomalyst is an immuosuppressant.
Lastly, I guess you need to be asking what the real chances of you contracting measles are. Unless you are hanging out at a child daycare center in a city that might be known for not vaccinating their kids (i.e. Boulder, CO where about 18% of kindergartners are not vaccinated), the chances of you coming in contact with someone with measles are extremely slim. At least that is what my GP and local onc recently told me before I got my MMR vaccine as a SMM patient. I want to underscore that others may disagree with this statement and that I am simply repeating what my own doctors told me in Colorado. (BTW, I went ahead and did get vaccinated as a SMM patient...see https://myelomabeacon.org/forum/mmr-vaccine-smoldering-multiple-myeloma-t4899.html )
Hope this helps.
A few things to consider:
You can't get just a measles vaccine. You have to get a 3-way MMR (Measles/Mumps/Rubella) vaccine.
Why not get your titers checked for MMR to see if you even need to get vaccinated (it's not a given that any earlier immunity has been eliminated). A set of MMR titers is a pretty quick and cheap test to have done.
Also, at least one organization recommends being off immunosuppressive treatment for a year before getting re-vaccinated. See: https://www.fredhutch.org/en/treatment/long-term-follow-up/FAQs/vaccination.html
"...It is also important that patients NOT receive the measles, mumps, and rubella (MMR) vaccine until two years post-transplant and at least one year after discontinuing immunosuppressive therapy".
To be clear, Pomalyst is an immuosuppressant.
Lastly, I guess you need to be asking what the real chances of you contracting measles are. Unless you are hanging out at a child daycare center in a city that might be known for not vaccinating their kids (i.e. Boulder, CO where about 18% of kindergartners are not vaccinated), the chances of you coming in contact with someone with measles are extremely slim. At least that is what my GP and local onc recently told me before I got my MMR vaccine as a SMM patient. I want to underscore that others may disagree with this statement and that I am simply repeating what my own doctors told me in Colorado. (BTW, I went ahead and did get vaccinated as a SMM patient...see https://myelomabeacon.org/forum/mmr-vaccine-smoldering-multiple-myeloma-t4899.html )
Hope this helps.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Mayo Clinic measles vaccine study
I agree with Multibilly that getting titers done for whether you have antibodies to the MMR viruses is a good path to follow. Supposedly with an allo transplant you would have the antibodies that your donor had.
Nancy in Phila
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Mayo Clinic measles vaccine study
Thank you for the suggestions.
A titer is a good idea because, if I already have some immunity, then the decision is out of my hands! I just am not sure whether the risk of not being immunized is worth it, or whether I should risk it in case the measles therapy from Mayo ever becomes an option for me.
Multibilly, my doctor at Johns Hopkins said they like to immunize at 2 years as long as there is no GVH to speak of. And I am one of those risk-taking patients who travels a lot, so I understand her desire to get me covered.
Thanks again!
A titer is a good idea because, if I already have some immunity, then the decision is out of my hands! I just am not sure whether the risk of not being immunized is worth it, or whether I should risk it in case the measles therapy from Mayo ever becomes an option for me.
Multibilly, my doctor at Johns Hopkins said they like to immunize at 2 years as long as there is no GVH to speak of. And I am one of those risk-taking patients who travels a lot, so I understand her desire to get me covered.
Thanks again!
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Dana - Name: Dana
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2009
- Age at diagnosis: 43
Re: Mayo Clinic measles vaccine study
Does anyone have an update on the Mayo Clinic measles vaccine study? My husband is now 2 years post ASCT, and is due to have the MMR vaccination this month. I seem to recall that if you get the vaccine, you would not potentially qualify for this study, should the need arise (currently, he is stable).
What's the latest thinking regarding the measles vaccination approach?
Many thanks,
Sandy
What's the latest thinking regarding the measles vaccination approach?
Many thanks,
Sandy
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SandyC63 - Name: SandyC
- Who do you know with myeloma?: My Husband
- When were you/they diagnosed?: 2012
- Age at diagnosis: 51
Re: Mayo Clinic measles vaccine study
I realize this is hear-say. I know I read some place (and cannot find it), that even if multiple myeloma patients have had the measle shot they still may not have the immunity that would prevent them from qualifying for the treatment. I wish I could find it.
My husband is undergoing transplant and that will be one of the questions I ask with the shots he needs to get.
My biggest fear is we make a treatment decision now that prevents him from qualifying for a curative treatment down the road.
My husband is undergoing transplant and that will be one of the questions I ask with the shots he needs to get.
My biggest fear is we make a treatment decision now that prevents him from qualifying for a curative treatment down the road.
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