Thursday, April 19, 2012

Sleepless in Hamburg

Just a short entry out of sleeplessness. Went to bed and could not sleep. For the last six weeks my girlfriend has been here with me, now she is back in San Diego. A good reason for a sleepless night? Actually, thinking of work. How boring, you could say, but not if you think about that I am working in science. The bad (and also good) thing about this line of work: it eats you alive, you can think about the story you are working on 24/7. It never stops being interesting. And there is always the hope it might lead to something really useful. Something like: Find the key factor in cancer, the "magic vulnerability". Off note, all current science points to the fact this might not exist. Every cancer we look at is different, and will probably need its unique treatment.
Every time science comes up with something novel, exciting and hopeful, in clinical trials it does not work that well. Last keywords: angiogenesis inhibitors, Tyrosine kinase inhibitors (some of which actually do work very well, but they do not cure, just keep growth of cells  in check-> Gleevec, the blockbuster drug for CML, chronic myeloid leukemia).
My current new favorite toy/focus of interest: "Histone Chaperones" These are factors which regulate chromatin, which is the form how our DNA is packaged, and plays a critical role in how genes are turned on and off. And those Histone chaperones regulate the incorporation of histone variants into regions  of  chromatin, thereby regulating whole genomic regions, rather than individual genes. Unfortunately, I do not see, how these factors will be "Druggable". But now I do feel tired. Goodnight. Sorry, not a very revealing entry.

18 comments:

  1. Thank you so much for writing this blog. My 22-year-old brother was diagnosed 2 months ago with AA and just finished his 6 weeks of Temador and radiation. It is so nice to hear that you are so many years out and doing great as we are of course terrified of the stats. A couple questions if you wouldn't mind: How long did you stay on Temador and did you take the supplements (tea/oil) at the same time as the Temador? Did you have any concerns about possible decreased efficacy of the Temador with any supplements? I want little bro to take anything that has a chance of helping, but concerned about possibly lessening chemo's role. Any advice/thoughts would be greatly appreciated. Thank you much. --Rebecca, rebeccajangula@gmail.com

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  2. Rebecca, they do one cycle (5 days), two weeks break, another cycle (5 days). For howb long? Its hard to tell whats right. I myself did 15 cycles altogether, when I felt that I have increasing aversion against the drug, and since classic recommendation is a minimum 12 (but again, nobody knows whats right, there simply might not be a "right"), that was when I decided to stop. it is not an easy decision , because, even if it makes you feel bad at leats its something that you do AGAINST IT: But doingTemodar-cycles forever is not good too, so I "listened to my body"(kind of). Concerning supplements, you are right. It depends on the chemo type though, antioxidants should reduce the efficacy of irradiation, or DNA damaging agents, like Cisplatin. so not recommended to mix. Temodar is an alkylating agent and I am not sure if that activity is affected by antioxidants. I personally did not take any during the time. At least not regularly. I typically have some multivitamins sitting on the shelf somewhere and I might have popped one now and then, but definetly not often (for exactly the reason you mention). What I did though (no idea if this is something "real" or just a placebo): I had a cup of an amazon herbal tea per day: "una de gato", or "cats claw" you should be able to get it online. I got the stuff from a Brazilian friend. Wikipedia tells it might be not completely off the rational: http://en.wikipedia.org/wiki/Uncaria_tomentosa#Medicinal_uses
    You will see they talk about "different chemotypes" so I do not know if this was actually helping or just hocus-pocus. But then, as I always say:
    "I need all the protection I can get" everything that might help is welcome. and if its only psychological, fine! Better than nothing!
    One more thing: for a while (first 9 monthes, roundabout) I also had about a teaspoon daily of "High Omega-3 Flaxseed oil" (Trader Joes) I stopped that after it gave me indigestion, probably because I overdid it. Besides that I led a remarkably normal life. I even went to parties and dinners (not as often though.) I think trying to stay happy and leding a normal life is very important too. especially trying to stay happy and a positive person. I know, that can be hard at times. But only when life is worthwhile you know what you are fighting for. And the fight is just to carry on and on and on. :-)
    One last (but not least) thing: Good, caring, patient(!) friends are important!! That gives a lot of strength and is very much needed!

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  3. Sorry, more precisely: the tea and the oil I took at the same time as Temodar, I just stayed away from antioxidants during the cycle.

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  4. Hi Thomas,

    Just want to let you know that I also appreciate you keeping this blog going. I check up on it every now and then and like it when there's a new post here. Wishing you a great summer!

    All the best,
    Ingrid up north (now survivor of craniotomy nr 2)

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  5. Ingrid-up-north, thank you so much for your kind words. Its a great feeling for me that I became a positive (and alive!) voice in that "graveyard" of Google results on an "Anaplastic astrocytoma survivor"-search. I promise I'll keep it going just for the sake of how I felt when I was searching online and there was not much at all!!

    You take care and be good!!

    Thomas :-)

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  6. Hi Thomas, just wanted to say awesome blog, please keep updating your progress! It gives me hope for my girlfriend (who was diagnosed with AA Grade 3 back in 2007).

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  7. Still here, just no news, but I will make an entry soon: my girlfriend moved in. Big changes! But thats not really cancer-specific, just "Life in general". But its good to be there, after my deep dive into the cancer-life! Plus , honestly, once having been there, I will never be as I was before again. But thats just natural, I guess.
    Anyway thank all you for writing. This makes me keep this blog up. I hope for many years to come!

    Thomas :-)

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  8. Hi Thomass!
    My name is Erica Olson and I am a student at Wartburg College in Waverly, Iowa. I am currently enrolled in a neurobiology class and am writing a paper on different types of astrocytoma. My professor had us select a blog that we felt would help us better understand the topic we chose, and I have selected your blog! I was wondering if you could possibly send me more information about the treatment you received and how exactly you were able to get rid of the tumor, as well as the diagnosis process you went through. I totally understand if you are uncomfortable talking about it, but I didn't think it would hurt to ask!
    ~ Erica (erica.olson@wartburg.edu)

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  9. Hello! I am a fellow anaplastic astrocytoma person who had surgery for her tumor to be removed about three weeks ago. I have been keeping a blog as well to document my rebel tumor. (http://pinkyandthebrainsurgery.blogspot.com/) I am also a science person, I have two degrees in microbiology and education, and now teach middle schoolers the awesomness of science. It was truly wonderful to read your blog and see the effect the tumor has had on a fellow science-AA nerd. Thanks for the blog and I'll hope for your continued success!

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  10. Thank you for posting Thomas! My husband is 7 months post surgery and radiation for an AA3. He's now on a 12 month Temodar cycle. We are seeing doctors in a learning institution (University of Washington ) as well. Your story is very heartfelt and inspiring to our family. Please update as you have time. Merry Christmas!
    Terra
    terraoliver@hotmail.com

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  12. Hi Thomas! My sister also has brain cancer. I just got the email today that the pathology lab at John Hopkins as confirmed that the tumor was classified as AA3. I just wanted to say thank you so much for writing this blog... I started immediately researching some more information about Imetelstat and AA3 today and read the stat about most patients live 2-5 years after diagnosis. I am taking your blog as a sign that my 13 year old sister will beat these odds, because I am an american and right now I am on a student exchange in Hamburg, and you´ve been so successful in beating this awful disease! Much love.

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  13. Hi, my brother just has had surgery of.. we do not know what exactly but for sure malignant brain cancer. i hope on Low - Grade Astrocytoma, it could be AA as well, but plase, please, please God, not multifocal glioblastoma. Now we have to wait ..

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  14. Hi,

    I have a quick question about your blog, would you mind emailing me when you get a chance?

    Thanks,

    Cameron

    cameronvsj(at)gmail.com

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    Replies
    1. Hi, Cameron, I sent you an email from my work address.
      Hope to hear from you!

      Take care,

      Thomas :-)

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  15. Hope all is well with you! Wishing you a good summer ;-)

    Ingrid (checking in on your blog every now and then)

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  16. Thank you, Ingrid. Still here, still fine. The question , wheterv to image or not, is still lingering over me. At this stage its almost a more philosophical than a medical issue. Finally Hamburg has generated nice, warm sunshine and I am using my bike every day. Life's good.

    Hope my blog is of some help!
    Take care,

    Thomas :-)

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  17. I appreciate all of the information that you have shared. Thank you for the hard work!
    A glioma is a type of tumor that starts in the brain or spine. Gliomas arise from glial cells, which act as a supportive cell in the central nervous system. Gliomas are the second most common type of tumor after meningiomas.

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