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Hi Lou,
This is Bernies Neteller e-mail [email protected] Still it would be better for Bernie to comfirm that this account is still valid.Hi everyone
Captain is right about [email protected] – thanks!
Kristen started radiation therapy last Thursday as well as her chemotherapy. She gets sick sometimes in the morning, but keeps her spirits up anyway. She also sends her love as I told her what is happening here on the board.
We are looking into agaricus blazei mushroom, and also THC as an alternative / complimentary therapies.
Check this out conspiracy buffs:
http://www.alternet.org/story/9257http://www.newstarget.com/z002575.html – excerpt: Dr. Manuel Guzman and his research team experimented with mice and two human patients who had glioblastoma multiforme, a difficult cancer to treat, and who had not responded to chemotherapy, radiotherapy or surgery. Both patients then experienced reduced vascular endothelial growth (VEGF) in the tumor because the cannabinoids halted the VEGF production by producing Ceramide (which controls cell growth).
We had some reggae in yesterday and she was able to dance a little!
Out of all of this, I cannot believe the amount of love and spirit from everyone we know. It’s incredible. :inlove:
I have to keep this short, because we leave in 45 minutes for radiation.
Very best regards to everyone out there.
Ronda, Jeff, Dennis, Lou, Allan, ALL of you, THANKS for your support, and notes, sorry my email is messed up or I would have been responding!!
love,
BernieHey Bernie,
That is what friends are! I hope that we all can meet in person someday in the future my good friend.Hey Lou,
Can you make this thread a sticky? Thanks!I made it sticky.
I hope all goes well.
Isn’t THC legal for chemo patients in California?
Sorry to hear this Bernie. Don’t give up and good luck!!
All the best to your wife.
Freddy
Me to Cappy. I’m pissed off I haven’t made it happen sooner. All about living in the now instead of trying to get just “a little bit” more comfortable.
Thanks Dom for making this a sticky. And Kristen does get Marinol (synthetic THC) for neausea from the Temador (chemo agent) and radiation treatment. She also gets something called Kytril. We suggested the Marinol to the doctor for neausea. We did it to try to get both effects, the neausea and that it attaches to the same receptor molecule in the brain that THC does and basically does the same thing.
We are working on getting her a Proposition 215 (Compassionate Use Act) card so we can actually make tinctures and butter for cooking from the real thing.
Again thanks for the hope and prayers from all my good friends here at CAP and also from those reading the thread and wishing us good will, even though we don’t have personal interaction yet.
I feel things starting to shift here. We are finally out of the “form filling out” process where everyone in the hospital has you filling out forms and meeting with people.
SO now its just the treatment in the morning and going home (its about a 3 hour round trip drive)
Thanks so much everyone I love you all!!!
Again thanks for the countless private emails, and pms although I have not been able to reply to them all yet!
Bernie
Hi Bernie,
As soon as I get money in neteller, I’ll send over.
I’m thinking Friday..
I want to help a little even though you need A LOT!!I hope Kristen is feeling ok…still saying prayers for both of you~
Bernie, give Kristen a big hug for us! I think about her all the time
As soon as I get money in neteller, I’ll send over.
same here B. probably won’t be until after the first of the month, but I too will not forgot as soon as I get money in neteller.
Bernie, we sent a little to your neteller a few days ago, noticed you hadn’t claimed it yet, it’s from my bellsouth addy, just so you know.
Hi Bernie,
I’m new to the CAP website but thought i should respond after reading your post about your wife – I happen to be writing a book about cancer survivors (on the psychological and emotional aspects of being diagnosed) and had the opportunity to interview several brain cancer survivors (with gliomas) during the interview phase of the book.
One of these survivors (he had an “oligodendroglioma” – a rare type of glioma that is similar to glioblastoma) went to the Mayo Clinic in Rochester, Minnesota for a second opinion. This survivor was undergoing treatments (Temedar or Temodar, I think) that weren’t working. At the Mayo Clinic, he was able to get into a cutting edge clinical trial that put him into remission in December (after 4 months) and as of April 10, his scans are still clean.
Anyway, I just wanted to let you know that the Mayo Clinic in Rochester is absolutely one of the best treatment centers for Gliomas (they have access to the latest cutting edge clinical trials) and it might be a good place for a future consultation (of course, UCSF isn’t so bad either!).
In gathering interviews for brian cancer, I found a wealth of information and many support groups on MSN & Yahoo in case you are interested (if you are, just PM me!).
Anyway, hoped I could be of service.
Sincerely,
Kevin MolloyThanks Kevin – Temodar is what Kristen is taking with radiation. We won’t know how it worked until a little after radiation is over.
We are considering a hyperbaric oxygen chamber in Chico. We are also using a mushroom called agaricus blazeii.
The hyperbaric therapy is supposed to ease the side effects of the radiation and make the radiation more lethal to the tumor.
Currently she is doing “okay” … she sleeps about 18 hours a day. Hard to tell right now.
Best regards, Bernie
A special thanks to those who donated to us, that was too kind. I think I wrote everyone thank you notes and if somehow I missed someone, please nudge me. Things are still busy around here – without Kristen it’s a lot of work. I can’t wait till things get back to normal!! Thanks so much everyone, we love you all!
Bernie & Kristen
I hope everything gets better, friend.
:highflyer I came to say hi 2 guys.Hope all the webmasters doing good.
