Stephen, Linda, Annie, David and all on this blogsite -
we would like to start planning ahead for possible vaccines treatment. I have read through the information Stephen has shared on the four German clinics. Also heard about Linda working through a local clinic in Australia to avail of the same. Two quick questions:
1. Is there a way to avail of the vaccines treatment in USA from these German clinics? Meaning is it possible to administer the injections after importing the vaccines that they prepare there? My mom can not travel in near future and therefore we are looking for options to get vaccines in USA. Has anyone arranged for it before in US?
2. I have ordered gene testing of her tumor and detailed report on 500 genes should arrive in about 2-3 weeks. Can you please point to additional research to determine right vaccine/clinic selection.
thanks!
we would like to start planning ahead for possible vaccines treatment. I have read through the information Stephen has shared on the four German clinics. Also heard about Linda working through a local clinic in Australia to avail of the same. Two quick questions:
1. Is there a way to avail of the vaccines treatment in USA from these German clinics? Meaning is it possible to administer the injections after importing the vaccines that they prepare there? My mom can not travel in near future and therefore we are looking for options to get vaccines in USA. Has anyone arranged for it before in US?
2. I have ordered gene testing of her tumor and detailed report on 500 genes should arrive in about 2-3 weeks. Can you please point to additional research to determine right vaccine/clinic selection.
thanks!
Hi Jinesh! I don't know the answer regarding the dendritic cell therapy they do in Germany - BUT - I am *very hopeful* to get my Dad on Nivolumab or Keytruda at our local oncologist's office. I have recently learned that once our insurance denies the Nivolumab, the manufacturer is pretty generous in distributing the drugs cost free if you qualify. I filled this form out and had our Onc complete his portion: http://www.bms.com/products/patient-assistance/pages/opdivo-uninsured.aspx
ReplyDeleteThe pharmacist said that she has seen people get it this way. Fingers crossed. I don't know which is better - Nivolumab or Keytruda - but she said both have been successfully ordered thru discount programs like this in their clinic. Not sure if this is common knowledge but Dr. Chamberlain did not offer this to us when I asked about Nivolumab a few months back so it may be new.
Annie
Thank you Annie. We will also explore it with our Oncologist.
ReplyDeleteI am still curious about other people's experience or knowledge of how to avail of vaccine treatment from Germany/Japan in US if possible.
Look into Dr. Chang here in NYC: https://csn.cancer.org/node/261357
DeleteAgreed. Dr Chang does collaborate with Dr. Nesselhut in Germany. http://meridianmedical.org/our-team/
DeleteBut she would likely have to make at least one initial trip to Nesselhut's clinic in Germany.
I am also curious to hear the replies u get to this. On a side question about the pd-l1 immunotherapies- if u do get this off trial would it stop or exclude patients from future trials? I just worry as we all know combining and hitting GBM from as many targets or diff avenues as possible seems to be the best possible option. As time goes on we are seeing more and more trials that are doing this. It is all our hopes that pd-l1 will b one that can b added to chemo, polio, targeted treatment, gene therapy, other immunotherapies, CarT cells, and so on. I am concerned that if we go ahead and try it now w just chemo that then when they do start combining w other things (as they have already started I think) we would b excluded cause we already used it or r using it and it would b more beneficial to use it in combination w other things and then wasted our chance. Of course, it sucks that we all even have to worry or weigh these things to begin with but as we all know, it's the reality we all face. Does any one know if I am being overly cautious or too paranoid here?? As to which is better-keytruda or Nivolumab- I swear I read something on it or that they will have updated data soon?? Or I m confused?? Lol I think they said doing the combo w both (can't remember off top of my head which 2 pd l1 it was but believe was the two used for melanoma) didn't do as well when combined together for GBM as they did w melonoma and just doing one did better then the combo. It seems it is the same as w others, where it works w some but not w others and they r looking more into to c which markers this is for. Again, I can't specifically remember which one they found that people did better when having higher of (maybe pd l1)? I can look at my notes or others can give more info as u can b tested to c before u decide whether to start now or wait for trial. Or I m wrong and need to wait to re read my notes before I respond on these threads!! I look forward to everyone's insight and thoughtful responses.
ReplyDeleteAs always, thanks and u all are always in my thoughts.
This is a valid concern Kylie.
DeleteFor example, there is a trial at Duke University testing a CMV-targeted dendritic cell vaccine with nivolumab. The combination is much more likely to work than either therapy alone. If there were any chance of getting into a trial like that, I would be hesitant to go on anti-PD1 therapy and eliminate the chances of getting into the trial.
https://clinicaltrials.gov/ct2/show/NCT02529072
The same trial also excludes patients who've had Avastin. I haven't heard any results from this trial as it just started, but it's one of my top favorite trials at the moment.
I've never heard of nivolumab + pembrolizumab (Keytruda) being combined. You're probably thinking of the nivolumab + ipilimumab (Yervoy) combination that has been used in melanoma and also tried in GBM, but was not more effective than nivolumab alone in the preliminary data. Yervoy is actually an anti-CTLA4 antibody (CTLA4 is another immune checkpoint, like PD-1/PDL1).
We have been looking into trials in Germany but I haven't gotten too far. I am new to this site. How can I get the names and any other information on the Germany clinics MY 38 yr. old son has GBM grade4
ReplyDeleteSend me an email:
Deletebraintumourreconnaissance@gmail.com
I'll add you to the Brain Tumor Library on Google Drive where I keep a document with some details of the German immunotherapy clinics.
Hi Jinesh,
ReplyDeleteRegarding your second question:
"I have ordered gene testing of her tumor and detailed report on 500 genes should arrive in about 2-3 weeks. Can you please point to additional research to determine right vaccine/clinic selection."
It depends which type of vaccine you're looking at. Tumor lysate-pulsed dendritic cell vaccines don't require genetic sequencing data. On the other hand peptide vaccines do make use of such data, and there are some companies that do whole exome (DNA) sequencing and then pick a subset of the discovered neoantigens to make a personalized peptide cocktail vaccine. I've just added another company to the German immunotherapy document, which is an example of this latter approach.
Hi Stephen -
ReplyDeleteThanks. Are these clinics in Germany providing the treatment to people without clinical trials? Are there any criteria to avail of their treatment besides money? thx
Yes vaccines in those clinics are available to anybody who can purchase them.
DeleteThis comment has been removed by the author.
ReplyDeleteMy family member is getting vaccines at unifontis. The first appointment at that clinic has to be in Germany but once they manufacture the vaccine subsequent treatments can be administered in any country that permits transport of the vaccine to that country. For example patients caregiver is being trained in Germany how to administer subsequent shots. When I was choosing the clinic I asked for advice people from storemytumor.com since they work with all those clinics. I also asked opinion of an expert. People from storemytumor.com advised me to go with unifontis. "Independent expert" advised clinical trial because those are very much controlled . German clinics are not but if there are no good clinical trial options then of all the German clinics unifontis seems to offer best treatment. What I know from people from storemytumor is that all the patients they directed to unifontis had both vaccines and diflunisal. None of the patients they know had only vaccines. They might be a good place to call for more information. Diflunisal is a treatment offered only by that clinic.
ReplyDeleteThanks Lucy. What is the total cost of treatment at Unifontis? And do you know by any chance if USA allows import of such vaccine? thanks!
DeleteHi all.my 30yr old daughter has just had her 2nd resection. Which is grade4.she had an astrocytoma in 2009 which resected.she underwent radiation and chemo.the recurred a year ago and they put her on temo.we are looking for options because we are desperate to help her before this thing takes her from us. Anybody able to offer advice on what we should be asking for or demananding from her oncology team? We live in the uk.cheers john
ReplyDeleteI'm so sorry John, this thing is just horrible. I'm concerned people may miss your message as you are within a different post -if you do a post of your own more people will see it - and they are more informed than I am and will be able to help you better.
DeleteHave you tried the Care Oncology Clinic, Harley Street? (not as expensive as it sounds). Also Kings College hospital in London has been involved in DC Vax trials.
all good wishes for a positive outcome