Hello Everybody,
I have been off the cocktail forum for a while, because I was busy to arrange a treatment for my dad.
It seems like my dad is now going to Germany to receive dendritic celltherapy, we only need to do some blood tests, so I think we will be there within a month.
My dad did the cocktail medications and supplements for I think 2 months, also during his chemoradiation. But since he is unmethylated he doesn't want to take the chemotherapy anymore and he wants to focus on his immune system.
My dad did not finish his radiation therapy, he took about 23 treatments, so he missed 7 treatments.
His last radiation treatment was about a month ago.
The hospital told my dad that they will start a vaccine trial for recurrent gbm patients, but only for the patients who followed the STUPP protocol.
So we are now unsure what to do, my dad feels fine so he doesn't really want to continue radiation, but we are not sure if he does not finish it if they will deny him to future trials for recurrent GBM.
I saw on clinical trials.gov that the inclusion criteria for a lot of trials is that the patient has followed the stupp regimen, but I don't know how strict they are.
Because in the STUPP protocol says that you need to finish the radiation treatment in 6 weeks, but he has now a break from 4 weeks, so i don't know if that's an issue. Because otherwise there is no point for him to continue..
I hope anyone can answer my question.
Thank you.
Lycka.
Hi Lycka!
ReplyDeleteLook, I´m no doctor, but if I had the opportunity to do that trial, I´ll certainly do the remaining sessions. Even more since he´s already done 23 of them, I wouldn´t risk being excluded for that!
About the 4 weeks break he got, I think you could manage to get a certificate that says that he did 30 radio sessions, without further explaining. That should leave the trial people happy!
Best of luck for your dad!
Matias.
Hi Lycka, welcome back!
ReplyDeleteI'm not sure how strictly the Stupp protocol has to be followed in order to be eligible for trials for recurrences. The rules might vary with each different trial. I'd suggest contacting the trial investigators for the vaccine trial you mentioned and asking them directly if the patient had to have completed radiation etc.
Also keep in mind that doing the immunotherapy in Germany might exclude him from future immunotherapy trials. That would be another thing to ask the investigators at your dad's hospital about. Would be good to know what all the rules are beforehand.
I noticed that some of the trials had a requirement "no immunotherapy within 4 weeks prior to the trial". There might be some that wouldn't allow any immunotherapy at all. I am wondering about that too. I will keep looking for such trials to make sure we are not interested in them.
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DeleteThank you guys! I will look into it.
ReplyDeleteWelcome back, Lycka! I am wishing your dad much success in the dendritic cell treatment!
ReplyDeleteWhich hospital in Germany is the treatment going to held at? Who is the leading oncologist?
with best wishes,
--Guergana
Lycka, Can I ask you about the immunotherapy? Did they tell you to bring paraffin block with tumor tissue? As far I know they can use frozen tumor tissue to create those vaccines, but one person whom I know personally is getting the immunotherapy there and she told me that they created her vaccines using the paraffin block tumor tissue which seems strange to me. I emailed the clinic and asked about the tumor tissue in a paraffin block if it can be of any use but they did not answear my qustion.
ReplyDeleteThank you
Anna
Thank you! @Guergana. it is in a private clinic in Duderstadt.
ReplyDelete@Anna, Ofcourse you can ! Yes they are going to use the tumor tissue. We have tumor tissue without paraffin, so therefore I never asked if it was possible with paraffin. To be honest, I find it also a bit odd that they never asked any specifics about the tumor tissue... The DCVax treatment says they can't use tumor tissue with paraffin or other additives, but I don't know if they prepare it differently or something..
May I ask when you e-mailed them?
And who is the person who is getting the immunotherapy there? Is that person also a braincancer patient?
Thank you
Lycka.
Lycka, It is a braincancer patient but I exaggerated that I know the person. My brother is thinking about getting immunotherapy there and it is somebody from his town. I emailed the clinic few times within last few days and got some more information. They send me some pricing info and some other stuff.
DeleteThey said they have 4 types of vaccines. Unprimed, primed with tumor lysate, primed with peptides, and also vaccine for egfr 3 mutant tumors. For peptide priming they check the HLA A2 status.
DeleteHi anna!
ReplyDeleteWe have a date set now, we are going very soon.
Yes i know and they also told us that they are start making a peptide against the CMV. Also we are asking for a tetanus shot.
About the tumortissue: they emailed us that they can use both: in paraffin and not. They don't prefer the flash frozen one.
Hi Hanna/Lycka. Can I email you? If so what is your email address? We will probably go for the immunotherapy there too but still did not make a firm decision. After reading on astrocytomaoptions.com about PD1 inhibitors that it makes sense to combine those with dendric cell vaccines I have asked the doctors there if they do so. They said that yes they can combine PD1 inhibitor with the vaccine to make it more effective. PD1 inhibitors are very expensive though.
ReplyDeleteOfcourse You can ! Just leave your emailadress
Deletekanusia@yahoo.com
ReplyDeleteHi Hanna, Lycka. Can I ask if you went to the clinic in Germany? If so, how was the treatment, are you satisfied?
ReplyDelete