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nightingale
Member since May-21-07
4 posts
May-21-07, 09:52 PM (PST)
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"Glioblastoma"
 
   Dear forum members,
I am from Germany and, as probably all of you, ordered DCA from www.buydca.com. My father was diagnosed with a glioblastoma (stage 4) in December 2006. He suffered from hemiparesis (right side) and sometimes also aphasia, but back then we could cope with the symptomes very well by administering Dexamethasone (about 20mg/day). The tumor could not be removed at all due to its location (right in the motocortex), so the surgeons just took a biopsy.
We started a radiotherapy and chemotherapy (Temodal) in January and my father did not suffer from side effects too much, which we were glad about. He started to have seizures from time to time, though. Right after the 4-5 weeks of radiotherapy and the first cycle of Temodal, his symptoms got worse and we were not able to ease them with dexamethasone. He had anothe MRI 5 weeks after the last day of radiography and Temodal and it showed that neither one had had any impact on the tumor - it had grown about 2-3 times as big as it was in the beginning (1cm diameter in December). So we stopped any further therapy in February.
Since March, he has been needing a wheelchair and a lot of help with everything (food, personal hygiene etc.). Then, later in March, he also started to sleep a lot, and finally he slept almost all day, had severe problems with his memory and consciousness. Altogether, his general condition got worse and worse very, very rapidly.
Then we finally received the DCA and started with 1g/day (.5g in the morning and .5g in the evening). That was on April 20th. After one week, he got a lot better, one can say almost over night. He stayed up all day (just two short naps), was able to have guests, talk with them, he was able to follow in conversations, watch a movie on TV (without falling asleep after a few minutes) and he can move his right arm a little bit (which was impossible before).
First, we could not believe it, but now his condition has been stable for more than 3 weeks and is still improving a little. We can take him out in his wheelchair and he is very interested in his environment and does not get tired at all. He is so to speak as usual, apart from the hemiparesis, of course. But his general condition is very good.
His doctor also feels that he has improved a lot over the past 4 weeks. He does not know that we take the DCA, but we are probably going to tell him about it next time he comes.

My father showed side effects in the third week of DCA, which included numbness and tickling in both hands. We stopped DCA for 4 days then and started again at the same dosage and the side effects have not occurred again so far.

My father is 58 and has no other disorders that might effect the DCA (such as liver problems etc.). He has never smoked, if that is of any concern.

We are looking for other patients using DCA with glioblastomas. Please feel free to contact us either in this chat room or via email. We will be happy to exchange experiences and information.

Best wishes,
nightingale


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Glioblastoma [View All], nightingale, 09:52 PM, May-21-07, (0)  
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Jesus Bortoni
Member since Feb-8-07
5 posts
May-22-07, 03:39 AM (PST)
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1. "RE: Glioblastoma"
In response to message #0
 
   Jesus Bortoni
That is wonderful news. Please continue to update us with as much info as possible. My prayers to you and your father.
Jesus Bortoni


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John A
Member since Mar-18-07
113 posts
May-22-07, 04:58 AM (PST)
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2. "RE: Glioblastoma"
In response to message #0
 
   Hello Nightingale,

That is wonderful news and confirms that the small DCA molecule can effectively cross the difficult Blood-Brain Barrier which will encourage other patients with inoperable brain tumours especially those children out there.

Is your father on any special diet, pH management or supplements including Ascorbic acid (Vitamin C) which is also effective at crossing the Blood- Brain barrier in the important oxidised form. ?


Thank you and please keep in touch.

John A.
Research Chemist

John A


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nightingale
Member since May-21-07
4 posts
May-28-07, 06:54 PM (PST)
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4. "RE: Glioblastoma"
In response to message #2
 
   >
>
>Is your father on any special diet, pH management or
>supplements including Ascorbic acid (Vitamin C) which is
>also effective at crossing the Blood- Brain barrier in the
>important oxidised form. ?
>
>
>John A.
>Research Chemist


Hi again and sorry fpr not replying immediately,
we have not had any changes withing the past couple of days. My father is still quite well, on the weekend he was able to stay out in his wheelchair for more than 1.5 hours without being tired at all and meet with friends. Now is starting to learn how to move his wheelchair on his own, which is difficult since he cannot move his right leg and arm (arm just a little bit, but not enough to use it for movement or anything like that).
He is still taking 1g DCA per day and we still have not had any side effects again.

Jesus, thank you for your reply and thoughts.

Antonio, thank you for replying and sharing your experiences. How is your father now?

John, my father does not take any supplements at all and is not on a special diet. He is taking dexamethasone (14mg/day, reduced from 16mg last week) and boswellia serrata at 1600mg/day, which is also known as H15 or Indian frankincense (I am ot sure if that is the correct English expression, sorry) for reducing the oedema. Additionally, he is taking meds for stomach protection (with the cortisone) and againgst the seizures.
Would you recommend anything else? We were thinking about B-vitamines. What about the antioxidants? I read your post about the combination with DCA and that it does not neccessarily reduce tumor growth - but I am not sure what it would be like in our case.
What about vitamine C?
We were also thinking about increasing the amount of DCA because my father is not having any problems with it at all.

Anybody who has can help us with that, please let us know your experiences with supplements or dosages.

Thanks a lot!

Julia


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areyesgo
Member since Mar-19-07
9 posts
May-23-07, 04:14 AM (PST)
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3. "RE: Glioblastoma"
In response to message #0
 
   Hi friend:
We are in Spain and my father was diagnosed with a gliblastoma multiform, I just copied and pasted my posts below so you can read our experience. I would like to be in touch to exchange information,

Antonio


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areyesgo
Member since Mar-19-07
7 posts May-03-07, 05:34 AM (PST)

"Another Glioblastoma + DCA experience in Spain"

Dear forum friends:
My father (79) was diagoned with a Blioblastoma Multiform 4 last December 23rd, the toumour was exellently remvoved by his neuro-surgeon on December 29th, Gliadel was placed in the tumour bed.
On January 19th he was done a Contrast Tac that showed no tumour tissue left, we do know that there are always some cancerous cells remaining since surgery in these cases can only clean the brain surface.
He began radiation and chemotherapy (Temodal) on February 26th and finished both on April 16th. On April 17th he began NaDCA at 15mg/KG/day (he weighs 70 kg) + antioxidants supplements (Muchas gracias Sandra por tu ayuda). After the first week, and due to his weak condition we reduced dose down to 12.5 mg/kg/day and increased the suppplements and decided that one ay a week he should be off medication, he is old and his metabolism is not fast anymore. He experienced a drop in his glucose level after 10 days on DCA which has been worked out introducing two small meals, one between breakfast and lunch and another between lunch and supper.
On April 30th he was done another CT that showed just the scar of the radiation and no cancerous tissue, but we know there´s always some cells remaining. His excellent oncologist prescribed a hemogram for next week and will prescribe a Magnetic Resoncance Image in two or three weeks to confirm.
He will keep on DCA at lowest dosage (10mg/kg/day)to make sure what we believe DCA does and to keep him safe from possible DCA side effects.
Right now my father still feels very weak but a bit better day by day and we hope that he will be able to recover from radio and chemo side effects.
He will begin his second Temodal Cycle at the end of May for 5 days (he will be off DCA for those 5 days), and it seems that Temodal sinergises well with Tagamet, so we will try that too, Luckyly his caring medical team is open to suggestions.

We recieved a lot of help from Sandra and the DCAsite.com people so if there´s any information anyone would need I am glad to share.
Excuse my English please.


Areyesgo


Antonio


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joe2007
Member since May-9-07
2 posts May-09-07, 10:10 PM (PST)

1. "RE: Another Glioblastoma + DCA experience in Spain"
In response to message #0

Antonio,
It's always good to hear good news!. I just wanted to ask you how did you administered the DCA. Was it powder or pills? Thank you


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areyesgo
Member since Mar-19-07
7 posts May-10-07, 04:13 AM (PST)

2. "RE: Another Glioblastoma + DCA experience in Spain"
In response to message #1

Hi Joe 2007:
My father is taking NaDCA in capsules, mixed with a little lactose as an excipient.

Antonio


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joe2007
Member since May-9-07
2 posts May-10-07, 01:56 PM (PST)

3. "RE: Another Glioblastoma + DCA experience in Spain"
In response to message #2

Antonio,
Thank you for replying. My brother is also fighting GBM IV. I really wish there were a space on this site dedicated to each type of cancer to better monitor their progress, support and suggestions. I've purchased the DCA from the website but I really don't understand the difference between NaDCA and DCA.

Best regards

Joe


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Sandra
Member since Feb-27-07
294 posts May-10-07, 05:11 PM (PST)

4. "RE: Another Glioblastoma + DCA experience in Spain"
In response to message #3

Hi Joe,
What you've purchased from buyDCA is actually NaDCA. DCA itself is an acid (which would burn your throat if you consumed it) and this acid is buffered with sodium to raise the pH to a more neutral form. We've all just been calling NaDCA by the name DCA for purpose of discussion of this forum. Hope this clarifies things for you.

Take care,
Sandra


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areyesgo
Member since Mar-19-07
7 posts May-10-07, 08:35 PM (PST)

5. "RE: Another Glioblastoma + DCA experience in Spain"
In response to message #3

Dear Joe:
Wish you and your brother the very best in this wrestling.
Sandra did excellently reply your question, it is NaDCA ( salt)what you have as medication.
My father is also having some anti-oxidants and supplemnts (lipoic acid, vitamine C, Omega 3,6,9, CoQ10, sylimarine, Vit. B1 B6 B12, Vit. E, red grape skin extract....).
Good luck and I am sure he will make it !!!!.

Antonio


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m on December 23rd 2006.

Antonio


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Andrea
Member since Jun-29-07
1 posts
Jun-29-07, 04:19 PM (PST)
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5. "RE: Glioblastoma"
In response to message #3
 
   Hello,

Sounds like there have been impressive results with the DCA. Does anyone know if it is ok to take Poly MVA, artemisinin, low dose naltrexone, glutathione, and other supplements with it? Also is it ok to do chemo - Avastin and CPT-11 with it, and any other meds, are there any restrictions? My boyfriend is taking all of the above with a few more supplements and meds.

Thank you!
Andrea


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oracle
Member since Mar-17-07
197 posts
Aug-06-07, 03:15 PM (PST)
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9. "RE: Glioblastoma - DCA and Taxol etc"
In response to message #5
 
MY wife is on all the standard Chemo's and a new nan particle system abraxane all the while taking DCA and its been a good ride so far. No side effects at all - we think it improves effects if anything.

God Bless and Keep The Faith Your Doing Awesome!

Oracle


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oracle
Member since Mar-17-07
197 posts
Aug-06-07, 03:16 PM (PST)
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10. "RE: Glioblastoma DCA and Avastin"
In response to message #5
 
Sorry left this out - she is taking avastin every two weeks and once again all is really great so far.

God Bless

Oracle


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sandor
Member since Dec-2-07
4 posts
Dec-02-07, 06:46 PM (PST)
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21. "RE: Glioblastoma"
In response to message #3
 
   Hello Antonio,

I have read your last message from May. Do you have any news or new results of the treatment of your father?

Please let us know.

Best regards
Sandor


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Sandramoderator
Member since Feb-27-07
887 posts
Dec-03-07, 07:18 PM (PST)
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23. "RE: Glioblastoma"
In response to message #21
 
>Hello Antonio,
>
>I have read your last message from May. Do you have any news
>or new results of the treatment of your father?
>
>Please let us know.
>
>Best regards
>Sandor

Sandor,

Antonio and I wrote fairly often and I'm sorry to be the one to tell you, but Antonio doesn't follow the forum much anymore. His father, who was 80, passed away Oct 12th from pneumonia, unrelated to DCA. He had complications from radiation therapy 'radio leucoencefalopaty post RT' (something his surgeon had advised against at his age, but his oncologist went ahead with anyway).

Take care,
Sandra



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sandor
Member since Dec-2-07
4 posts
Dec-04-07, 08:48 AM (PST)
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24. "RE: Glioblastoma"
In response to message #23
 
   Dear Sandra,

Thanks for your kind message. I feel sorry for Antonio and his father.
But I keep on looking for good news. If anybody has some, please put them on the forum.

Best regards
Sandor


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crono5
Member since Aug-2-07
136 posts
Aug-05-07, 12:37 PM (PST)
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6. "RE: Glioblastoma"
In response to message #0
 
Hello.
My dad Stanislaw, has been diagnosed with and is undergoing treatment for a malignant brain tumor at a hospital in rural Poland. His doctors have told him not to expect to survive longer than six months. In January of this year, my Dad , who is 61-years-old, experienced significant paresis of the left side of his body, intermittent loss of consciousness, and loss of bladder and bowel control. A CT performed on January 10th showed an extensive tumor in the right, front portion of the brain that, morphologically, appeared to be a “butterfly glioma” measuring 7 x 3 cm, with an extensive area of edema in the right portion of the brain (frontal-temporal-parietal area, from the base to the top layer). The CT also showed “smoothing” of the right lobes and “shallowing” of the left lobes as well as pressure in the frontal corners of both sides of the brain and the other portions of the right side but no change in the brain stem, cerebellum and fourth ventricle. Surgery was performed on my Dad on January 16th that his records describe as being “Craniotomia frontalis dex. Exstirpatio tumoris fere totalis.” His surgeons told him that complete removal of the tumor (which they term a "glioblastoma multiforma") was impossible. My Dad's recovery from his surgery was uneventful but he thereafter experienced bowel and bladder incontinence and displayed emotional overreactions in everyday situations. Between March 22 and March 30 he was hospitalized for treatment that is described in his records only as "radioterapia SHORT." His next such treatment was scheduled for April 23rd. On approximately April 10th, however,my Dad displayed symptoms that were characterized as "epilepsy" and was prescribed Clonazepam and Amizepin by his personal physician, who referred him for follow-up CT and EEG examinations, both of which took place on April 17th. That CT showed enlargement of the portion of the tumor that remained after the patient's craniotomy. Following those examinations, my Dad's Clonzepam treatment was discontinued and his dosage of Amizepin increased. His treatment with Dexamethason, which he has been receiving since his surgery, was continued and, at my request, he was prescribed Coaxil to treat his depression. During the past monts, my Dad experienced at least six additional episode of “epilepsy.” I have put my low sugar diet, without of any meat, fats and stuff like that. Mostly fruits and veg. But unfortunatly after radioterapy condition of my Dad, was getting worsen. Few day'a ago, i have heard about an antibiotic therapy that initiates apoptosis. when sherching on the net, i have found info about the DCA. I have read in march about the DCA, but i loose the url. Know i furtunatly found it. Tommorow or day after tommorow i shhoudl recive DCA. I'll be giveing you breaf summary about progress of the therapy. My target is to get together bouth therapy - The DCa Therapy and the therapy with a common antibiotic - doxycycline. According to: http://www.nysun.com/article/59523
and:
http://news-service.stanford.edu/news/2004/october13/med-felsher-1013.html
http://www.sciencenews.org/articles/20041016/fob8.asp
I think that it mait work.

http://apoptoza.info
http://nadzieja-glejak.pun.pl
http://glejak.pl/forum


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rtshinn
Member since Mar-7-07
137 posts
Aug-05-07, 04:32 PM (PST)
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7. "RE: Glioblastoma"
In response to message #6
 
   I hope you are right.
I noticed that the studies quoted qere from 2004. Has there been any follow up since?


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crono5
Member since Aug-2-07
136 posts
Aug-05-07, 07:45 PM (PST)
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8. "RE: Glioblastoma"
In response to message #7
 
No, i did'nt found nothing new on that, but few day's ago i found quite interesting news:
http://abclocal.go.com/kgo/story?section=edell&id=5525939


There's also other interesting thing about Siomycin A:

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=7287582&dopt=AbstractPlus
http://cancerres.aacrjournals.org/cgi/content/abstract/66/19/9731
http://www.level1diet.com/research/id/471033
http://www.ncbi.nlm.nih.gov/sites/entrez?term=17018632&cmd=search&db=pubmed
http://www.rxpgnews.com/antibiotics/Antibiotic_inhibits_cancer_gene_activity_5025_5025.shtml
http://www.drugresearcher.com/news/ng.asp?id=70978-cancer-siomycin-a-side-effects
http://www.emaxhealth.com/51/7692.html
http://diss.kib.ki.se/2005/91-7140-202-0/thesis.pdf

P.S.
In poland we have a forum about the Glioblastoma:
http://aj-press.home.pl/glejak/phpBB2/index.php

http://apoptoza.info
http://nadzieja-glejak.pun.pl
http://glejak.pl/forum


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rtshinn
Member since Mar-7-07
137 posts
Aug-06-07, 04:06 PM (PST)
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11. "RE: Glioblastoma"
In response to message #8
 
   Yes, I saw other articles about the Myc gene suppression using antibiotics.
Looks very promising.


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crono5
Member since Aug-2-07
136 posts
Aug-26-07, 10:52 AM (PST)
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18. "RE: Glioblastoma"
In response to message #7
 
I looked closer on that art about that drug, and heh i missed one point -- that lab guys changed the enzyme in mices to make the switch work, so back to drawning board..

http://apoptoza.info
http://nadzieja-glejak.pun.pl
http://glejak.pl/forum


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crono5
Member since Aug-2-07
136 posts
Aug-06-07, 04:46 PM (PST)
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12. "RE: Glioblastoma"
In response to message #6
 
Hello.
I have recived NADCA. Its:
SODIUM DICHLOROACETATE MIN. 96%
ethyl alcohol, wather ~4%
I would like to know is it ok if it's only 96%?

http://apoptoza.info
http://nadzieja-glejak.pun.pl
http://glejak.pl/forum


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crono5
Member since Aug-2-07
136 posts
Aug-20-07, 08:17 AM (PST)
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15. "RE: Glioblastoma"
In response to message #12
 
Hello.
On 13'th of august i've receved 99% NaDCA from USA. Soon i will be startingb the treatment. But first the bacteria infection of His urinary bladder must be cured.

http://apoptoza.info
http://nadzieja-glejak.pun.pl
http://glejak.pl/forum


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billn
Member since Apr-27-07
146 posts
Aug-20-07, 11:07 AM (PST)
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16. "RE: Glioblastoma"
In response to message #15
 
WHERE did you get the DCA from?

Billn


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crono5
Member since Aug-2-07
136 posts
Aug-26-07, 10:49 AM (PST)
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17. "RE: Glioblastoma"
In response to message #16
 
I got it form poland & USA

http://apoptoza.info
http://nadzieja-glejak.pun.pl
http://glejak.pl/forum


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silvia
Member since Aug-8-07
5 posts
Aug-08-07, 02:34 PM (PST)
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13. "RE: Glioblastoma"
In response to message #0
 
   dear forum members
i 'am from italy ,i need your help because my boyfriend was diagnosed "GLIOBLASTOMA".
i want some information about DCA,experience and effects etc.
sorry but i don't speak english.
ho bisogno di sapere se il dca sta facendo effetto e se puo' essere somministrato con il cortisone o il mannitolo.
C'e' qualche altro farmaco che puo' aiutare il dca in questa cura?vi prego e' urgente.

PS se qualcuno ha questo tipo di tumore mi faccia sapere se sta funzionando bene

Grazie Silvia


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adminadmin
Member since Feb-7-07
239 posts
Aug-08-07, 07:27 PM (PST)
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14. "RE: Glioblastoma"
In response to message #13
 
   LAST EDITED ON Aug-08-07 AT 07:27 PM (PST)
 
Silvia,

This site is a wealth of information, the answer to the question you ask already lies here. You will have to take the time to read through the site.

Here are ideas for you:

1. You can translate theDCAsite to Italian using the Google link icon on the forum home page.
2. You can read all the posts from the last month because we have had many testimonials/results. You can breeze past the ones that do not apply.
3. You can read the testimonial part of the forum.
4. You can find out the side-effects by going here http://www.thedcasite.com/dca_safety.html or looking in the forum.

Thank you, good luck & best wishes,

Heather, Forum Moderator


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sandor
Member since Dec-2-07
4 posts
Dec-03-07, 08:10 AM (PST)
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22. "RE: Glioblastoma"
In response to message #14
 
   Hello Heather,

Do you have any recent information?

My father, 84 years old and until recently in very good physical and intellectual condition, was diagnosed in August of having glioblastoma. He is very week now and the communication with him is getting more and more difficult.

I am missing the results of the above illness stories. Are there durable positive results or rather negative ones? Why are the discussions ending?

I am looking forward to your kind comments.
Thank you!
Sandor


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valentinak86
Member since Sep-4-10
1 posts
Sep-04-10, 11:38 AM (PST)
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25. "RE: Glioblastoma"
In response to message #13
 
   >dear forum members
>i 'am from italy ,i need your help because my boyfriend was
>diagnosed "GLIOBLASTOMA".
>i want some information about DCA,experience and effects
>etc.
>sorry but i don't speak english.
>ho bisogno di sapere se il dca sta facendo effetto e se
>puo' essere somministrato con il cortisone o il mannitolo.
>C'e' qualche altro farmaco che puo' aiutare il dca in questa
>cura?vi prego e' urgente.
>
>PS se qualcuno ha questo tipo di tumore mi faccia sapere se
>sta funzionando bene
>
>Grazie Silvia

Ti ho mandato un messaggio privato Silvia con tutto quello che sono riuscita a trovare.


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valentinak86
Member since Sep-4-10
1 posts
Sep-04-10, 11:38 AM (PST)
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26. "RE: Glioblastoma"
In response to message #13
 
   >dear forum members
>i 'am from italy ,i need your help because my boyfriend was
>diagnosed "GLIOBLASTOMA".
>i want some information about DCA,experience and effects
>etc.
>sorry but i don't speak english.
>ho bisogno di sapere se il dca sta facendo effetto e se
>puo' essere somministrato con il cortisone o il mannitolo.
>C'e' qualche altro farmaco che puo' aiutare il dca in questa
>cura?vi prego e' urgente.
>
>PS se qualcuno ha questo tipo di tumore mi faccia sapere se
>sta funzionando bene
>
>Grazie Silvia


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Cshepp
Member since Nov-18-07
15 posts
Nov-22-07, 07:24 AM (PST)
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19. "RE: Glioblastoma"
In response to message #0
 
   Nightingale... do you have any updates? My father is 57 with a GBM IV as well, day 14 of DCA. Please let me know how it is going.

Thanks!


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sandor
Member since Dec-2-07
4 posts
Dec-02-07, 02:14 PM (PST)
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20. "RE: Glioblastoma"
In response to message #0
 
   Hello Nightingale,

How is your father doing? I have not found any new message from you. I hope he is doing better!

Best regards
Sandor


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