Third Vaccine Treatment
Chemotherapy, DCVax April 22nd, 2009
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I went in for my third vaccination series yesterday. I obviously can’t say for sure what is helping, but I have more energy than I’ve had in a long time – think I mentioned this. I’m taking valcyte, thalidomide, the vaccine (DCVax-Brain) and will still be seeing results from the gamma knife (both positive as well as swelling which could result in swelling and certainly explain the seizures). One thing is for sure – I haven’t felt this good in a long time.
I have completed day 0, day 10 and day 20. My next vaccination is 8 weeks from now on May 27th. The schedule wasn’t laid out for me very clearly at first but this is when it starts spreading out. I will be having an MRI here in the next 3 weeks or so and I should have some good information at that point because the aftermath of the gamma knife surgery will have cleared up much moreso than when we had the last MRI. Interpreting the images will be much easier.
It is so great to be in a routine for now. There was so much up in the air. So, this side is ok but now I have to tackle the seizure issue and talk strategy with my Neurologist. I’m about maxed on the Keppra so we may need to look elsewhere. I have two other meds that also control this so perhaps another combo is in order. It’s somewhat of a constant job staying on everything but if I do these things and pay attention to everything – and act on what I need to do – I can ensure that the time I have with my kids and family can be fulfilling.
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That is wonderful news, Mark!
I know you and your team will get something worked out and get the seizure issues ironed out. We have faith
Thank you. As is the case with anything, it’s a matter of finding a solution or altering the existing. Thanks for your support.
This is great news!! I hope things continue to go well for you. Always remember to stay strong no matter what life brings your way. I wish you the best of luck with everything that’s going on right now. Take it one day at a time and everything will get better!
–”RaSof”
I just read your post and most of the “about me” section and just wanted to say continue to be strong. It is wonderful news that everything is going great so far. No matter what life throws your way, remember to stay as strong as you can. You can beat this! I wish you all the luck in the future and thanks so much for sharing your story with us!
Mark,
Thanks for continuing to update your blog concerning your vaccine regimen. I work in the field and have been excited to hear the “blow by blow” of your dendritic cell treatment.
I wondered if you had experienced any adverse reactions at the injection site as you’ve received your second and third treatments? Any redness or swelling there? This could be a sign of an improving immune response to the vaccine. Maybe they’ve done something else to look for a response to the vaccine? Just curious, if you’re willing to share.
I also wanted to pass along that with immunotherapies, it is common to see a period of rapid tumor growth after the start of treatment. Don’t be discouraged if this is the case. From what I’ve read and observed, most of the patients that respond will go through this phase before the immune system reels in the tumor.
Keep fightin’ the good fight…
Keith,
Thanks for your note and insight. Thus far, everything seems to be going well. I haven’t experienced any issues that would indicate a reaction to the vaccine. Your comments regarding tumor growth after starting immunotherapy are interesting. Having gamma knife surgery in March followed by this vaccine treatment makes for an interesting goose chase – I also take a few other drugs. It could be growth but could also be brain swelling resulting from the gamma knife surgery.
Whatever the case, the frequency of my seizures has increased.
Thanks Keith
Hi Mark
I’m so glad your doing well. I have a sister diagnosed with GBM and have tried to get her on the DCVax trial as thi seems very promising.
I contacted several locations and was told that the trial is on hold. I emailed Northwest Bitherapeutics, no response.
Can you give me any info? What site are you receiving your vaccine?
I was fortunate enough to get on board just before they had put it all on hold. I’m on a compassionate use path with them which is good but I’m not sure how much they have done in this area. I know they plan to. It’s too bad that we have all of this government stimulus funding going, in some cases, to what I view as questionable initiatives/objectives when there are all kinds of needs that have to be met and cannot be without that funding.
I wish I could be of assistance. My best advice, however, is to get in touch with Linda Liau (sp?) at UCLA. She runs their trial and is very on top of this.
Mark