New GBM, DCvax-l is it realy good?

48 Posts | Page(s): 1 2 3 4 5  Next 

New GBM, DCvax-l is it realy good?

by M.nabil on Fri Jul 05, 2013 11:34 AM

Quote | Reply

Hi all, and greetings from egypt, 

i`m a 30 yrs old son of a 57 yrs mom who was recently Diagnosed with GBM Grade IV 

actually it was a Cyst 6X4X3 cm containing a solid 2 cm Nodule (which happened to be a tumor after surgery)

so my mom had a surgery 2 weeks ago and removed the Cyst and the Tumor. after pathology analysis we knew the sad fact, but atm we are doing Pathology test "Immunohistochemistry, Ki67" to specify the nature exactly the tumor type , our Neurologist said it might be a lower grade "Hopefully"

anyway, as a non American/ European i had to kill my self researching online papers and loads of websites/ experminets. by now i know much about GBM but some of my worries and doubts are a s follows:

1- DCvax-L Immuno therapy median survival is some 3 YEARS! is a non-harmful "not much side effects" and most importantly NATURAL body immunization is it realy tha promising?

2- Gene Therapy treatments ,Tocagen 511 and such products.

3- what is the differnece between Clinics that offer tailored Gene Therapy / Immuno Therapy and The abovementioned commercail products? and are they fo the same procedure/Quality?

P.S : I only mentioned the -Out of the Box- Expermental treatemtn that in my own opinion and little research are the future (cause they fight cancer cells with you own body .. naturally.. with minimal side effects!)

i have red about TTF and so but not to be distracted i`m atm completely for DCvax-L and trying to forsee steps necessary to it as my mom might start Radio next week .. no time to lose.

regards,

hope you are well, fighting  and in good spirit =)

RE: New GBM, DCvax-l is it realy good?

by johnlane45 on Fri Jul 05, 2013 05:27 PM

Quote | Reply

DCVax-L has had very good results in improving progression free survival and overall survival in prior trials for GBM, Ovarian and Prostate cancers. They have recently expanded GBM trial in UK at Kings College Hospital where this trial has been granted a national priority trial. They are also awaiting PEI approval in Germany and have about 24 sites awaiting approval to start enrollment of patients.

The Northwest Bio web site iswww.nwbio.comand you can check into options......good luck and hope all is well with your Mom.

John

RE: New GBM, DCvax-l is it realy good?

by M.nabil on Fri Jul 05, 2013 06:34 PM

Quote | Reply

thanks for your replay,

the problem is that King`s hospital i already contacted...they were polite and fast replaying.... but i couldn`t understand why does "Surgery naiive" prevent my mother from taking care there... (surely i wasn`t speaking of staying there for free!)

but when reading about Phase III here:http://clinicaltrials.gov/show/NCT00045968

i can see that having a Resection surgery.. doesn`t cut my mothers eligibility. (or maybe it must be done by them?)

anyway they said

"I am sorry to hear about your mother.
I am afraid that due to strict eligibility criteria, your mother is not eligible to the study as not surgery naïve."

and then he gave me contact to nwbio.. the other problem is by much reading the company doesn`t have realy much staff i did email them TWICE in the last days no replies.

now my only hope is German Hospitals if they deployed the campaign soon, else i can never relocate to the U.S as the distance and travel costs many times are a killer for us.

hope anyone has any ideas or experinces with International patients having access to the drug even if we had to pay for the regular clinical costs

cheers

RE: New GBM, DCvax-l is it realy good?

by johnlane45 on Sat Jul 06, 2013 11:11 AM

Quote | Reply

I beleive you can ask for compassionate use in Germany once they gain approval which should be very soon as target approval was July 2013. I have emailed NWBO in the past and sometimes takes a week to 10 days to get a response as I am sure they are getting many inquiries especially now that that started a new trial for all inoperable solid tumor cancers for Pancreatic, Liver, Lung, Ovarian , etc at MD Anderson in Houston.

Good luck in my honest opinion I believe you are on the right track finding the best care for your mother, I would be doing the same thing as you. You are a good son!

John

RE: New GBM, DCvax-l is it realy good?

by M.nabil on Sat Jul 06, 2013 02:00 PM

Quote | Reply

thanks alot for the update regarding thier response time,

and more thanks for the spirit lifting comments i`m kinda cleuless here and abit hesitant on what to do

today we got the Ki67 pathology confirming GBM, and neurologist forwarded us to an oncologist while also doing MRI to start radiotherapy sessions.

P.S: Neurologist knows about DCvax-L and he told me kindly that we don`t use non-FDA medication and when i insisted he told me we can`t do this at early stages we have to do the "Regular" basic therapy of radio and might follow with Chemo.

Thanks

RE: New GBM, DCvax-l is it realy good?

by SimonAl on Sat Jul 06, 2013 06:41 PM

Quote | Reply

On jul 06, 2013 2:00 M.nabil wrote:

thanks alot for the update regarding thier response time,

and more thanks for the spirit lifting comments i`m kinda cleuless here and abit hesitant on what to do

today we got the Ki67 pathology confirming GBM, and neurologist forwarded us to an oncologist while also doing MRI to start radiotherapy sessions.

P.S: Neurologist knows about DCvax-L and he told me kindly that we don`t use non-FDA medication and when i insisted he told me we can`t do this at early stages we have to do the "Regular" basic therapy of radio and might follow with Chemo.

Thanks

Hello Nabil, I've read your message. 

I am studying medicine in Germany and have finished my basic education.  Now I'm studying for specialist oncology.  Now that m exams for this term are over, and now that I've been granted two weeks of holidays, I'm reading about new treatments in cancer.  DCVax-L is one of the treatment that got my attention, so I started reading about it.

DCVax-L is indeed in the testing phase, but it is phase III, meaning that this is the final phase before authorities can approve the treatment.

 

DCVax-L has delivered some outstanding results, as there are still two people alive (and doing daily activities, sports, ...) after they were treated on DCVax-L 10years ago for GBM!!! The overall survival and progression free survival was statistically significantly higher than standard of care treatment in the earlier testing phases with a p-value of  0.0003 (meaning that there would only be a 3/10000 chance that the higher overall survival and progressions free survival were due to coincidence). 

 

The treatment is said not to be painful, doesn't have much side effects and should be rather "cheap" for a cancer treatment.  As far as I know, Kings College does compassionate use as well, meaning if you pay for the treatment, they will treat you.

Please keep me informed, because I'm interested in your story.

RE: New GBM, DCvax-l is it realy good?

by M.nabil on Sun Jul 07, 2013 10:44 AM

Quote | Reply

Well, thanks alot for your explanation cleared many points for me but in the other hand without clinical trial access, paying 110K U.S $ is a LOL amount of money :(

hopefully i find something in germany upon application that will get us to pay clinical care costs np but for the vaccine its almost impossible 

but i wanted to ask you something.... what do u know of Tailored custom "Gene Therapy" and "Immuno therapy" in private clinics??? and whats the differnce between those and stuff that made by companies like DCvax-L and Tocagen 511 (like dcvax but its based on gene therapy)

is it the same? less effiecnt? or what?

i mean if we went to a clinic for immuno therapy and they tried to get her an immune response... results will be mostly better than Traditional Radio/Chemo?

regards, and thanks for your care, and i`ll keep this post updated as far as i can with my mom`s condition.

RE: New GBM, DCvax-l is it realy good?

by SimonAl on Sun Jul 07, 2013 06:02 PM

Quote | Reply

As far as I know, there are no FDA or EMA (Europe) approved gene/immuno therapies available at the moment. 

Tailor customed gene therapy and ummuno therapy in private clinics could work, but haven't been studied as much as DCvax-L or Tocagen. Therefore I would be skeptical against these so called "customed" therapies. 

IMO it would be better to get a treatment that is in phase 3 (like DCVax-L) than a treatment which is not overviewed by a government authority.  Therefore I cannot say if these results will be better than traditional radio/chemo.  All that I know is that DCVax-L did show some significant results on overall survival and progression free survival on GBM patients with an extremely low p-value (which is good).

I understand that the treatment cost is high, but you might want to try this site to get funding for your mom:

http://www.giveforward.com/cause/raise-money-for-medical-exp

Maybe you and your mom could go to this happening: the family day of the American Brain Tumor Association, I'm sure they can help you out better than me. 

http://hope.abta.org/site/TR/ABTAEvent/ConnectionsMeetingand

http://hope.abta.org/site/PageServer?pagename=2013PatientCon

RE: New GBM, DCvax-l is it realy good?

by M.nabil on Mon Jul 08, 2013 06:37 PM

Quote | Reply

My mother did visit the oncologist today.

(She did a Post- surgery MRI 2 days ago that revealed non contrast enhancing residuals only)

The Oncologist took the damn usual way of radio sessions and also is going to give him a drug "99% its temodar i guess" 

i`m fed up he didn`t tell her of any other routes or ways or whatever costy Gene therapy or immunotherapy just join the crowd..

they are f*cking so usual as doing routine office work....

i`m waiting for nwbio pateints support replay otherwise i`ll have to apply for Compassionate use... but i must do it in U.K or Germany..

do you have any idea of who to contact provided that we will pay for the DCvax-L.  and if so where to start the whole thing in which hospital? (an avergae cost yet reputable one)

cheers,

RE: New GBM, DCvax-l is it realy good?

by M.nabil on Mon Jul 08, 2013 07:53 PM

Quote | Reply

found an answer to my worries from Nwbio website:  

Question 3: I have had my tumor previously removed. Am I a candidate for treatment? 
Answer 3: Unfortunately, no. At least some amount of tumor tissue is needed in order to manufacture the vaccine. Without such tumor tissue, DCVax®-L would not be able to be manufactured unless and until a tumor recurrence happens. Fresh tumor is required; pathology and other stored samples cannot be used at this point. 

my mom`s parafin sample are useless..

Is it possible to make a biopsy for that? or rather not rush and wait for usual Radio/Chemo and if there is any recurrence go for a DCvax-l with a fresh tissue?

48 Posts | Page(s): 1 2 3 4 5  Next 
Subscribe to this message board discussion

Latest Messages

View More

CancerCompass Survey

If you were considering traveling for cancer treatment, which headline would you find more interesting?

Get $75 for taking a research survey

We care about your feedback. Let us know how we can improve your CancerCompass experience.