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Thread: Astrocytoma Diffuse WHO II grade,Is gene targeted therapy the right one?

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    Astrocytoma Diffuse WHO II grade,Is gene targeted therapy the right one?

    My name is Carolina.

    I am 30 years old and live in Poland.

    Until May 2011 I was very happy with my life and full of ideas for the future. I planned to get married and start a family.

    In May 2011 I was diagnosed with a tumor in the left hemisphere of the brain. Biopsy showed that the tumor is astrocytoma diffuse WHO grade II.
    From that moment my life has been turned upside down.

    I have visited numerous doctors in Poland and they all stated that the surgery to remove the tumor is impossible, because of its sensitive location and could result in permanent disability or death.

    In June 2011 I was offered two options: radiation therapy or observation until disease progression. The opinions of doctors about radiation therapy are not clear and it is a controversial issue. Doctors believe, that in my situation radiation will not help and may even cause harm and disease progression. Because of my well-being for the moment and stabilization of the disease within the past nine months, I decided to surrender to observation.
    Nobody knows when the disease may begin to get worse...In January 14th I had another MRI and tumor did not grow since May 2011.
    There is a chance for me to start treatment at the Burzynski Clinic in Houston, TX.
    Did any of you hear about this clinic??

    After analyzing my medical records I was qualified, by Burzynski Clinic, for non-invasive gene targeted therapy, which is very expensive.
    My friends are helping me a lot, they started money fundraising so I can afford this therapy at Burzynski Clinic...

    Do you guys know something about this clinic? Any experience???

    Please help because I just don't know what to do...where to start the treatment, where is the best place I should go...

    I would like to start the treatment in the USA I believe there are better doctors (possibilities) here and , I have a friend in California , so she can help me there...I don't have a lot of money, so I wish to stay at my friend's house so I won't spend money on hotels etc. Just the flight ticket will cost me a lot aprox.$1600!!!crazy!!

    Please let me know what are your suggestions.....Thank you ind advance for all your responses...

    Carolina

  2. #2
    Moderator Top User jpearson's Avatar
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    Carolina,

    Im sorry you find yourself in this situation. Brain tumors effect everyone differenly. And treatments and side effects everyone differentlypproved . feeling your life is upside down right now is normal. Keep positive thoughts and keep those futire plans going. The nice thing about a grade 2 is that it is usualyy slow growning.

    As far as the burz clinic, he has no FDA approved clinical trials. No Proven history of anything he does actually treating or curing patients. How ever they are really good at taking lots of money. Most on this site deem him a quack and a fraud. I feeel that you will get great info out of others on this site as well.

    best of luck to you and hit us up with any questions you have

    josh

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    Thank you Josh for a quick reply.

    It is a very hard decision for me what to do now...."wait and watch" or start a treatment, if start a treatment then the question is what kind of treatment?? Doctors said that radiation may makes thing worse so I'm so confused and completely don't know what to do....

  4. #4
    Administrator Top User Didee's Avatar
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    Hello. I am so sorry that you are having these worries. This must be such a very hard decision.
    I would like to suggest that you have a look in our Complementary therapies board.

    http://www.cancerforums.net/forums/3...tary-Therapies

    For articles on Burzinsky. I would also like to suggest that you google for reviews on him by the medical field.
    Aussie, age 57
    1987 CIN 111. Cervix lasered, no further problems.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011.
    Scan Feb 2012 .still in remission.
    Still NED Nov 2012. On to yearly bloods now.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

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  5. #5
    Administrator Top User Didee's Avatar
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    Actually I will move your thread there as the Burzinski topic is an alternative medicine and others will be able to help you hopefully with your decision.
    Aussie, age 57
    1987 CIN 111. Cervix lasered, no further problems.

    Dx Peripheral T Cell Lymphoma stage 2B bulky, aggressive Dec/09.
    6 chop14 and Neulasta.
    Clean PET April/10, 18 rads 36gy mop up. All done May 2010
    Iffy scan Nov. 2011.
    Scan Feb 2012 .still in remission.
    Still NED Nov 2012. On to yearly bloods now.

    May/2012. U/sound, thyroid scan, FNB. Benign adenoma. A lump in otherwords, nodule if you wish to be specific.

    CancerForums User Policy

    http://www.cancerforums.net/threads/...picture-policy

    Out of all the things I have lost, I miss my mind the most.

  6. #6
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    Let's be clear: Burzynski is a fraud. A sham. Do not waste your money or most of all your life on that scum. I hope I'm not being too subtle about this.

    There are however very highly regarded cancer centers here - Dana Faber (in Boston), Sloan-Ketting (in New York), and MD Anderson (in Houston) come to mind. I would see about a consultation there. Also you may not need to actually GO there, although that would be ideal. Contact them and ask if you could simply send your data (CT scans etc) and have a consultation by phone. Not sure if they would agree to do it, but given your limited money, it's worth asking. In fact I wish we had tried this more; when you think about it there really is no need for you to see them in person. It's not like they're giving you a physical. You can get blood tests, etc locally.

    I'm so sorry you are dealing with this. I wish you the very best!!

  7. #7
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    Dear Carolina,

    I'm sorry to hear about your diagnosis. It sounds as though you are doing well so far, and given the possible side-effects of radiation I think your doctors were right to decide against it at this time. Radiation can usually only be done once, so save the big guns till you need them.

    "Gene-targeted therapy" sounds cool, and in the future it may actually exist and be available for treating patients. It isn't now, and Dr. Burzynski is, well, lying.

    Dr. Burzynski's treatments have not been approved by the FDA despite over 30 years of "studies". He's never even reported on his studies in peer-reviewed journals. He also charges money for his "studies", while legitimate studies are free. If you've spent a lot of time reading about brain cancer, then you'll notice that the survival statistics in his brochure have huge gaps in them.

    Check out www.burzynskiscam.com for starters.

    If you really want to get into it, read the Respectful Insolence blog, which has a lot to say about Burzynski. A sample:

    http://tinyurl.com/7q7x2hy

    By the way, it's likely your post will attract commenters saying how wonderful Burzynski is and attacking those of us who say he isn't.

    California is a long way from Texas anyway, so staying at your friend's house wouldn't work-- but depending on where in California your friend lives, she may be close to a good brain tumor center. However, treatment would be expensive, unless you enroll in a free study. For more info on what studies are available, go to www.clinicaltrials.gov and do a search on diffuse astrocytoma. (The results will be worldwide, not just U.S.)

    And may I say-- your English is amazing.

  8. #8
    Senior User irishgirl's Avatar
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    First of all, I am sorry you are in this situation. With all of this medical advise can come some personal advise too if thatís what is needed.

    I was diagnosed in Dec 2010 with a brain tumor and after the resection in Feb 2011 it was found to be grade II Astrocytoma. The difference is mine was in the R frontal cortex and (the got all they could see) resection was preformed. During my initial appointment when I first found out about he tumor they thought it was a low-grade and I was given a watch and wait option. 5 days later my dad was diagnosed with a brain tumor and was advised to get surgery right away; his tumor was GBM IV. After that I decided I did not want to watch and waitóI wanted it out. I was blessed to have the tumor in a accessible location and also a gifted Neuro Surgeon (NS) where I lived. I did travel to a large NS center in Dallas, TX though to get a second opinion just to be sure. When they echoed the thoughts of the NS where I lived I decided to stay with the closer one.

    I know money is a huge concern and that does make everything more complicated. Sometimes a doctor can send your records to another doctor and get a second opinion that way. If it were me I would want another opinion from a NS at one of the large surgery centers in the US. Joe7 mentioned some of them. UT Southwestern in Dallas is also very good. Duke in NC is where Ted Kennedy (high profile political figure) had his surgery.

    I do not know anything about the Burzynski Clinic but I would be very cautious about non-research study tested methods. I know hos difficult it is to do nothing. They know my tumor will come back. They donít know when or how bad but they know it will come back. So I am now on a watch and wait status again. Itís very difficult and frustrating. As jpearson said a grade II is slow growing so that is a positive note in this situation which has turned your world upside down and Iím sure inside out. I too had plans and felt like they were pointless after my diagnosis; especially after losing my dad just 4 months after his diagnosis. My Neuro Oncologist (which I highly recommend you see one if you havenít already) tells me constantly hos different my tumor is from my dadís and that you cannot compare the two.

    When someone is diagnosis with a GBM IV all bets are off and they hit it with everything they have: radiation and chemo because the risks of the treatments will almost always out way those of the tumor. In the surgical sense surgeons typically arenít willing to sacrifice quality of life to remove the entire tumor; however some more experienced surgeons are willing to do more than inexperienced ones. This is why everyone on this site will tell you to get multiple opinions from top surgeonsóremoving at least some of the tumor is beneficial.

    Different doctors treat grade II brain tumor differently. Some will be on a watch and wait path and others will do chemo. I do not hear of many people doing radiation for a grade II for a few reasons: radiation can cause damage as they have to way the risks with the benefits and you only get one shot at radiation treatment. Tumors grow and will come backóoften at higher gradóso typically they like to save that option for when you really need it.

    Again I know this watch-and-wait-stuff is for the birds but my NO has convinced me it is the best course of action. I am involved in a research study that tracks (through high powered MRIís) the metabolite 2HG which is produced by IDH1 which is a gene mutation found in 70% of low-grade gliomas. A pharmaceutical company has just begun research to development a drug that will block 2HG which they think will prevent the tumor from growing. Cancer research is putting a lot of time into cancer metabolismótrying to figure out what the cancer is feeding off of so they can starve it to prevent growth. My NO is very excited about this research and is convinced by the time my tumor needs treatment there will be better treatment availableóthis could be true for you too.

    Like I said I donít know anything about the Burzynski Clinicóit sounds like others know more about it and are not convinced itís legit. Either way you go I beg you to do more research before you spend so much money on somethingóanything. I would also encourage you send your records to some neuro surgery hospitals in the states just to be sure about no possible resection. And finally if you arenít talking to a NEURO oncologist I think you shouldómine has been the most convincing and knowledgeable person I have talk to during all of this.

    As far as going ahead with you plans you should. I am still battling this everyday. I have started to make some plans but getting married it still scary for me. I also donít think I will be having children. I think one of the hardest things is it like being handed a death sentence but not being given the date. Itís strange because we all know we could die in a car crash this afternoon but someone this brain cancer thing seems more real. With that said you could have a very long time to live as they donít know when the tumor will start progressing so donít waste your life thinking you wonít have one with this tumor. That is really easily said and others have said it to me. I am not completely able to live my life without always thinking about the tumor but it is getting better. A dad doesnít go by that I donít think about it but hours go by now so that is an improvement. I can only hope it gets better. When I am due up for a follow-up MRI (every 3 months) I think about it more. I always think oh good I have a MRI I can see that I am fineóbut really I kind of freak out about it until I see the results. I think that is normal. Most here will say on a basic level they are living from MRI to MRI. That seems sad but we are living. I try to do the things I enjoy every day and make at least some plans. I do feel trapped by this diagnosis sometimes and Iím still working through that.

    Sorry this went on for so long, just wanted to give you everything I had in the matter. I know you have some tough decisions ahead of you so please seek support here, from your friends, or elsewhere during this time.

  9. #9
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    Thank you guys for your help, I much appreciate that!
    My friend from California contacted Brain Tumor Support Group in Newport Beach, they have some doctors available and they will review my medical records and let me know what they think, what's their opinion.I also will contact the hospitals that Joe7 recommended to me -thx Joe! I will also try to get a consultation via email with Mayo Clinic and Johns Hopkins I found out that they are number one in the USA in treating patient with brain tumors...I'm starting to think that Burzynski is not a good choice here...it would be very sad if all the money I'm hoping to collect will get wasted...
    @irishgirl-thank you for your support and I'm very very sorry that you lost your father and I wish you the best!!!!sometimes watch and wait is the best we can do....

  10. #10
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    Carolina, I'm glad you've made that decision about the Burzynski Clinic. Wasting money is exactly what that clinic does.

    I forgot to mention: if you do end up coming to the US, many cities have a Hope Lodge, run by the American Cancer Society, where cancer patients are housed free during treatment.

    We stayed at Hope Lodge during my sister's radiation treatments. There were many people from other countries there. There was a kitchen for us to prepare meals. At the lodge we stayed at brain tumor patients were required to bring a companion with them, I assume because of the possibility of seizures. (I don't know how strictly this was enforced.)

    It was all arranged for us by the social worker at the cancer center. The people you talk to at whatever cancer center will know if a Hope Lodge is available and how to get you in.

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    GBMsibling-Thank you for a great advice!Hope Lodge sounds like a great possibility for me if I'll find a treatment available for me in other state than California....thank you once again...

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    I'm glad we could direct you away from spending time and money on Burzynski. I don't have very many nice things to say about that man, so I will spare you the diatribe.

    I don't have much to add at this point (you guys beat me to it!) but I'll second GBMSibling's recommendation for the Respectful Insolence blog. Orac does good work.
    31-year-old agnostic survivor of low-grade oligo-astrocytoma, diagnosed 6/17/11.
    I maintain the Ramblings of a Traitorous Mind blog as a chronicle of my battle with cancer and my related reflections.

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    Hello Cherie,

    My friends are using Fundrazr app to help me collect the money for the treatment,but thank you for your reply to my post.

    I hope your little child is doing well. Best wishes for you!

    Carolina

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    CarolinaD,

    I am sorry to hear about your brain tumor, but happy to hear you are looking into reputable brain tumor centers. UCSF (in CA), Duke (in NC), Sloan Kettering (in NY), and MD Anderson (in TX), all have excellent brain tumor programs. Although your surgeons said your tumor was inoperable, that may not be entirely correct. The ability to surgically resect without causing permanent disability is directly related to the ability of the neurosurgeon. No neurosurgeon is capable of completely resecting a grade 2 astrocytoma because of the diffuse, infiltrative nature of these tumors. Nonetheless, even an incomplete or partial resection will result in cytoreduction (a decrease in the size of the tumor and number of tumor cells in the brain) and is clearly associated with increased median overall survival of patients with grade 2 astrocytomas. I would begin by FIRST looking for a neurosurgeon who has extensive experience resecting tumors in the same location as yours. I believe you said your tumor was located in left frontal lobe. If correct and you are right handed, then this area of your brain controls language processing. Neurosurgeons at UCSF (especially Drs. Sanai and Berger) have developed sophisticated intraoperative mapping procedures that allow for more extensive resection of astrocytomas in and around language centers. SECOND - there is no convincing evidence that up front radiation therapy of a grade 2 astrocytoma improves survival. There is, however, evidence that early radiation treatment results in cognitive problems. Best to leave the radiation until later and only if and when the grade 2 tumor progresses to a higher grade (3 or 4). THIRD - at least 50% to as many as 80% of grade 2 astrocytomas carry a mutation in the isocitrate dehydrogenase 1 gene (IDH1) that is clearly associated with a much more favorable prognosis. Your tumor samples should be tested for the IDH1 mutant. If you test positive for the IDH1 mutation, then chemotherapy is probably NOT a good option for you AT THIS TIME. The chemotherapy drug that is used for treating astrocytomas is temozolomide (or temodar or TMZ). TMZ is clearly associated with secondary cancers such as treatment-related leukemias and lymphomas that usually appear 3 to 5 years after TMZ treatment, but can appear as early as 6 months after TMZ. TMZ is also a MUTAGEN that has been associated with transformation to a higher grade (in other words it can convert a low grade astrocytoma to a higher grade astrocytoma). Given that the median overall survival for grade 2 astrocytoma is about 5 years while doing nothing (i.e. watch and wait) and longer for those that are IDH1 mutants, I would also recommend holding off on chemotherapy (certainly TMZ) at this time. Hope this helps. LMG

 
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