Avastin and Alternative GBM IV

Is there anyone here who has or knows someone who has forgone traditional radiation/chemo, for solely alternative treatments.  We have family members who believe that we should ignore radiation/chemo and get that gene therapy/ auto-immune treatment that's offered in Mexico and Canada.  But it seems like most survivors had traditional treatments, and alternative ones were solely additional?  Does anyone have anything to say on this matter?

Also, if you went through chemo/radiation, how bad was it?  My Dad is scared and has many people telling him it will take the life out of him, and he seems to be beginning to doubt his choice.

 Also, the hospital we are at told us Avastin couldn't be used for newly diagnosed GBM, that it hasn't been approved for it yet.  They said the only way we could get it was to go through a clinical trial where you are either given a placebo in addition to Temodar, or Temodar and Avastin for 8 weeks, but you don't know which you're getting.  This seems risky to us and if Avastin really does work better we don't understand why he can't get it.

On 10/18/2009 cubeinthesky wrote:

Is there anyone here who has or knows someone who has forgone traditional radiation/chemo, for solely alternative treatments.  We have family members who believe that we should ignore radiation/chemo and get that gene therapy/ auto-immune treatment that's offered in Mexico and Canada.  But it seems like most survivors had traditional treatments, and alternative ones were solely additional?  Does anyone have anything to say on this matter?

Also, if you went through chemo/radiation, how bad was it?  My Dad is scared and has many people telling him it will take the life out of him, and he seems to be beginning to doubt his choice.

 Also, the hospital we are at told us Avastin couldn't be used for newly diagnosed GBM, that it hasn't been approved for it yet.  They said the only way we could get it was to go through a clinical trial where you are either given a placebo in addition to Temodar, or Temodar and Avastin for 8 weeks, but you don't know which you're getting.  This seems risky to us and if Avastin really does work better we don't understand why he can't get it.

Oh, Cube, I worry about you and the burden of finding your father the right care for him is putting on you.  I hope that you have other family members doing as much research and asking all the right questions like you are.

From what I understand, all trials are done in conjunction with standard treatment of care (6 1/2 weeks of radiation with Temodar).  My husband did extremely well with radiation and continues on Temodar and feels fine -- no nausea or extreme exhaustion. There is fatigue but nothing alarming.  He is part of a clinical trial at Duke (which I mentioned) and receives a vaccine.  The standard treatment is considered very good (again, the radiation/chemo followed by chemo for 12 cycles -- 5 days on and 21 days off, I think -- my husband's is different because of the vaccine). I do not know anything at all about Canada or Mexico and, frankly, Mexico would make me nervous when they are making great strides here in our own country at the top brain tumor centers. Have you contacted MD Anderson, Cleveland Clinic, or Duke -- I know there are many more out there so for those of you who get frustrated with my not mentioning others, please forgive me as I know we are all passionate about where our loved ones are receiving care and hope that you will share those centers on here, as well.

You certainly do not want your dad to receive a placebo -- this is serious stuff you are dealing with and while we all want to see GBMs gone forever it should not be at the expense of your dad's life. I am a big supporter of clinical trials as long as the patient is actually receiving the drug to help cure him/her. Hard enough being a guinea pig but not knowing if you are getting the drug -- that would be torture.

Please try to take care of yourself. You are only 21 and I do not want you to burn yourself out this early in the game.  Remember, my offer still stands to talk/e-mail with your mom.  I am here for you all.

Holly

Husband dx GBM IV 2/09

I am feeling like Holly.  This is so much responsibilty for you.  I hope that your family members that are suggesting alternative treatments are doing the research that you are.  I believe they will find that no one wants to take risks with alternatives.  Most patients do however use complementary therapies. Supplements, like omega 3, miatake mushrooms pills, probiotics, Vitamin D3, melatonin etc.  Please read/google Ben Williams, a long tern survivor.  He does explain so much regarding all types of therapy.  My husband has done the 30 days rad/temador standard and handled it very well, a bit of fatigue and hair loss.  He also had stereotactic radiation for a progression and avastin plus temador.  Check out vitualtrials.com.  I think there is a trial using avastin with radiation and temador for newly diagnosed.  It may be that the avastin would be that or the placebo but he would still be getting the standard of care, radiation/temador.  Temador is oral and he would take zofran or something like it 1/2 hour prior to taking the temador.  My husband has never gotten sick from it.  I am not saying that there may be some truth to alternative treatments but who would risk it.  maybe your Dad-I dont know.  You could google the debunk site and see what is being said on these treatments too.  You are the best kid.

Hugs, Donna, Rob's wife

Dear Cube,

I'm pretty sure that Avastin WAS approved in May 2009 for brain tumors. You don't have to be on a trial to get it anymore. Andy just started on it two weeks ago.

That said, I think your father would be glad to know that most people are not severely affected by the standard radiation and chemo. It's not fun by any definition or description, but it's not painful or extremely nauseating. The radiation sometimes causes some skin irritation like a sunburn, but Andy didn't have any at all. And it also nukes the hair follicles... but who cares if you're ALIVE. The Temodar makes you tired but if you take your Zofran at the same time and take the meds at bedtime, it's not too bad. Avastin isn't chemo at all... it's an antiangiogenesis drug, so it doesn't seem to bother most people.

Hang in there!! Somehow we'll all get through this.

Sarah

mom of Andy 27 dx gbm/pnet 1/09

My Dear Cube,

Contact Duke.  They have trials for first time tumors using Avastin and the trials pay for meds.  They begin new trials all the time and if you can't get them (or Avastin) in your hospital, you can claim that you need to go out of network for treatment (that's what we had to do).  Here is link to site:

http://www.dukehealth.org/Services/BrainTumor/About

Now...about the homeopathic stuff.  I was bombarded by family who had a million different remedies, ointments, diets, crystals, etc...  While we DO meditate, pray, and eat brain-support foods, we know that God has provided amazing methods in hospitals.  You have to gently thank these folks for their loving concern and then do what you know to be right.  We believe in divine healing (and have experienced it), but God sends us talented medical folks for a reason.  Sometimes angels wear scrubs.

all love and prayers,

janni

In my survivor group we have at least 2 people who took some western medicine for GBM and a large amount of natural. www.cancercenter.com has a good record of doing both if they accept your insurance. I also will list a doctor in Mexico that does Low dose chemo along with natural and has been very effective. I am not sure how many GBM patients he has had but I do know he recently turned a breast cancer patient with mets thru her body and liver (documented) Around, and there is hardly any cancer left in her body. Low dose chemo and radiation if often a great way to take the medicine but not be overcome by it. I had an incurable cancer 5 years ago and did 10% Western and 90% alternative. It saved my life.

I was cancer free for 3.5 years and had a ?slight occurance in a sinus tumor.  The ? mark is for unkown as it could not be tested due to the intertwinng of the cranial nerves on the turmor. 10 low dose radiationto the head and 8 tumor specific to the face. 8 weeks later no tumor and no sign of cancer.

http://www.canhelp.com/ClinicsVisit.htm   GAmmill and Munoz are the low dose chemo and alternative on this page.  Remember we are all different and often Less is more!!! This is a personal decision I am just listing some ideas. All the best mms

On 10/18/2009 cubeinthesky wrote:

Is there anyone here who has or knows someone who has forgone traditional radiation/chemo, for solely alternative treatments.  We have family members who believe that we should ignore radiation/chemo and get that gene therapy/ auto-immune treatment that's offered in Mexico and Canada.  But it seems like most survivors had traditional treatments, and alternative ones were solely additional?  Does anyone have anything to say on this matter?

Also, if you went through chemo/radiation, how bad was it?  My Dad is scared and has many people telling him it will take the life out of him, and he seems to be beginning to doubt his choice.

 Also, the hospital we are at told us Avastin couldn't be used for newly diagnosed GBM, that it hasn't been approved for it yet.  They said the only way we could get it was to go through a clinical trial where you are either given a placebo in addition to Temodar, or Temodar and Avastin for 8 weeks, but you don't know which you're getting.  This seems risky to us and if Avastin really does work better we don't understand why he can't get it.

On 10/18/2009 cubeinthesky wrote:

Is there anyone here who has or knows someone who has forgone traditional radiation/chemo, for solely alternative treatments.  We have family members who believe that we should ignore radiation/chemo and get that gene therapy/ auto-immune treatment that's offered in Mexico and Canada.  But it seems like most survivors had traditional treatments, and alternative ones were solely additional?  Does anyone have anything to say on this matter?

Also, if you went through chemo/radiation, how bad was it?  My Dad is scared and has many people telling him it will take the life out of him, and he seems to be beginning to doubt his choice.

 Also, the hospital we are at told us Avastin couldn't be used for newly diagnosed GBM, that it hasn't been approved for it yet.  They said the only way we could get it was to go through a clinical trial where you are either given a placebo in addition to Temodar, or Temodar and Avastin for 8 weeks, but you don't know which you're getting.  This seems risky to us and if Avastin really does work better we don't understand why he can't get it.

Avastin has been FDA approved, but only for a recurrence of a brain tumor but not for the initial treatment.  Not sure if you could purchase it outside a trial, but it's tens of thousands of dollars, so most people would probably need a trial that would pick up the cost of it.

My husband (49 at dx, 06/2007, GBM, UW-Madison) went through surgery, followed by the radiation and Temodar, and had absolutely NO problems at all.  We were warned about side effects, but none of them seemed to happen for that initial treatment.  He was doing fine until a recurrence at 18 months, and now I think it's the steroids that are causing most of his problems.

We do have a friend who's mother is a Healing Touch practiioner who was diagnosed with a GBM in 2005, so she's had alternative therapies in addition to the standard treatment - which she too, tolerated just fine.  At 3 years, she had a small recurrence, the drugs made her ill (sorry, I don't know which one it was), so she discontinued them after the first and only month.  That was a year ago, so she's now 4 years out, not on any meds, and going strong.  I can't believe that her profession hasn't influenced her outcome. (so you may want to look into that as one of the additional alternative medicines).

Good luck on whatever you decide!

~Donna

Hi - You've had loads of information in previous responses; I just want to clear up one tiny misconception. When talking about clinical trials for cancer research, I do not believe there is ever a "placebo" arm -- you either get the trial treatment, or you get "standard of care" treatment. 

 I wish you the best in making a treatment decision for and with your  ... just realized I don't know if this question is for you or a family member/friend ... but I do wish you the best making this very difficult treatment decision.

My husband's experience with standard of care -- 30 rads with concurrent Temodar -- was that it was exhausting but with minimal side effects. He's now on Avastin with Irinotecan, and has been pretty much progression free for 3 months.

There are always trials opening up spaces; if you haven't found it yet, this link is really informative:http://clinicalstudies.info.nih.gov/

Best of luck to you  - Linda

On 10/18/2009 cubeinthesky wrote:

Is there anyone here who has or knows someone who has forgone traditional radiation/chemo, for solely alternative treatments.  We have family members who believe that we should ignore radiation/chemo and get that gene therapy/ auto-immune treatment that's offered in Mexico and Canada.  But it seems like most survivors had traditional treatments, and alternative ones were solely additional?  Does anyone have anything to say on this matter?

Also, if you went through chemo/radiation, how bad was it?  My Dad is scared and has many people telling him it will take the life out of him, and he seems to be beginning to doubt his choice.

 Also, the hospital we are at told us Avastin couldn't be used for newly diagnosed GBM, that it hasn't been approved for it yet.  They said the only way we could get it was to go through a clinical trial where you are either given a placebo in addition to Temodar, or Temodar and Avastin for 8 weeks, but you don't know which you're getting.  This seems risky to us and if Avastin really does work better we don't understand why he can't get it.

Hi there,

My sister was diagnosed 7/28/09 and finished chemo/radiation on 9/28/09. She worked the entire time and the only side effects we have noticed is a little short term memory loss and hair thinning. No nausea or extreme tiredness.

Her post treatment MRI unfortunatley shows that her tumor has grown back. That is neither here nor there...she has been offered Avastin along with Temodar after she has the second surgery on Oct 27th. when first diagnosed she was turned down for the Avastin clinical study. I would be surprised if he is turned down for the Avastin.

Keep the faith sweetie..we were scared to death about the chemo/radiation treatment as well. The whole thing is frightening..just put one foot in front of the other :)

Take care, Marilyn`s sisters

My husband went thru radiation/Temadar Jan 2009 then started the 28/7 regimen. He was ok and even drove himself for the first 5 weeks of radiation. He was never sick but the last week he was very weak and had several bad days-up until then constipation was his biggest problem but we planned early on for that and managed that issue. Unfortunely the Temadar failed him but he started Avastin only infusions in March 2009 which have been like a miracle for him. His tumor has shrunk more than 60% and any swelling in his brain has gone. He is completely off his steroids ( thank goodness ) and has a very good quality of life. Our insurance oked the Avastin even tho it is approved for recurring tumors..no problem there. He has some leg pain, rhinitis and he bruises very easily but his symptoms are manageble, as he says -better than the alternative. His MRIs have been clear except for the little kernel left of the tumor. So we have been very happy with the results. I hope this helps, as you can see many of have been down that road, we all wish you didn't have too, God bless you all and we pray for the day they find a cure for this beast.

Mrs F.,

Beverley