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Surgery, radiation, temodar and WHAT ELSE?

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

Dear All,

I have so many thoughts but I will keep myself focus. This hopefully won't degenerate in some emotional post. Anybody suggested some treatment to your neuro onc and the response is " That is a good though, we should look into this."?

Maybe I should be grateful that the neuro-onc is open to my ideas. But it infuriate me that, it is not my SPECIALTY, I should not be the one finding out about cutting edge treatment, the Neuro-Onc should know!

Ok, enough about "Should". My sister should never had Brain Cancer in the first place.

We need to be our own advocate. I hate the Odds. And I know that I should not pay attention to them. But truth be told, I have to look at them since I am reading so many clinical trials. (and when the authors report the survival times in terms of month, I divide by 12 on my calculator to see how many years). Once I put the computer down, I am like the ostrige. I burry my fears deep and smile. I make my sister laugh; she makes me laugh. We enjoy the day.

What I have suggested to the neuro-oncologist so far is (adjuvant medicine on top of surgery, radiation, and temodar):

1. Melatonin (Italian studies show prolonged survival); it is over the counter. My neuro-onc said OK it is safe.

2. Poly-ICLC. Again this is very safe. They conducted clinical trials on healthy subjects (probably college students in desperate need of cash- I am very grateful). It stimulate the immune system multifactorial. Don't take my word for it. Do your own search on the internet. There are many clinical trial that either use POLY-ICLC alone or with a vaccine. It won't be covered by your insurance (those b*stards) but your neuro-onc can order it "off labeled". I was told it would be around $300 every month. I will let you know.

3. Did you guys know that there is a peptide generic vaccine for glioma? Not the personalize one that needs to be organized before surgery (so the tumor cells from the surgery are presented to dendritic cells). A few scientists created a common glioma vaccines (actually there is a couple versions out there). I think the personalized vaccine is probably going to be better. But if you are like me, I did not even know about that option until the brain tumor resection was already made. (I actually did ask, but I was told that the technology was in infancy and not proven; but then again faced with such terrible odds, I will increase my chances anyway I can). So this GAA cocktail vaccine (the peptide glioma vaccine) has a couple versions: one is offered for grade 2. So yes, if you are or your love one has a grade 2 check it out (University of Pittsburgh). One is offered for grade 4 GBM. One (or maybe it is the same one) is offered for recurrent glioma 3. There is also one if you are a child with a grade 3, then you can qualify. (after passing through a rigorous check list). So where does this leave my beautiful sister? She has a recently diagnosed grade 3 and no clinical trial for a vaccine. Makes no sense. So this is what I did tonight: I emailed the investigators of the studies and asked for an exception "off labeled". We will see what happens.

4. I mentioned that we could use my sister's reservoir for an oncolytic virus trial. Phase 1 and 2 have proven safety. Again, we will see. Being part of one clinical trial would exclude you from another. (which is good for the investigator but not for the patient). I keep that idea in the back burner.

5. and then more chemo. I noticed a few of you have a different regimen then the usual temodar, or even temodar +avastin. I wonder how that came around. We know that if you are MGMT unfavorable, then temodar won't be as efficacious. I had insisted that my sister's tumor be analysed by Carris Life. They came back with a tumor molecular analysis and sensitivity to a few chemotherapeutic drugs. The plan is that after she tolerated the temodar for 3 cycles, we add fluorouracil. (also a oral agent). It is ironic (and scary!) that I came across Carris Life by coincidence; I was reading a brain cancer survivor's blog, and he had mentioned it and I though it would be a great idea for the future. Well it looks like we are using this info now. If anyone is curious how to get molecular analysis and cytology (which is different, I had Duke do it) my best advice is to ask for it. It can be done. Just be persistent.

6. One more though: anyone heard of nanotherapy, nanoparticles?

wow the post is a lot longer than I though it would be. I guess I just rather write about science then what I am feeling. I don't want to cry tonight.

J.

mighty6
Posts: 47
Joined: Sep 2011

Julia, allow me to use the phrase my kids like to use often:
You are one of the best sisters in the entire world!
Hope that cheers you up a bit:-)

Most of Drs. (neuro-surgeon, radiation Dr.) on our medical team don't seem to follow the latest research/trials much. So we missed the enrollment window for a few promising trials. Our Neuro-onc is half on clinical, half on research, she is more aware of the new ideas, but certainly not all. She also gets a little impatient when I asked too many questions. My husband later blame me being too aggressive :-) I know good Doctors come in all size and shapes.

Thanks for your list of the treatment/supplements. I will look into it :-) We are currently taking the following:
. Dr's Best Curcumin
. Celebrex
. will be on daily Temodar (lower dosage), this is to overcome the non-favorable MGMT status, will keep you posted
. (This is for all GBM patients): one of the most promising vaccines CDX-110 phase 3 (150 sites internationally!) is on the horizon. FDA approved a few days back.

Jane

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

Dear Jane,

You did make me smile.

I am with you with the Curcumin. My sister takes it everyday. She just had a recent operation and so celebrex is out for now because of the increase risk of bleeding.

It is good news for the GBMs: this CDX-110 phase 3 looks very promising!

For people wondering about AA3: it will not work. Anaplastic astrocytoma do not carry the EGRF VIII mutation that makes this vaccine so effective.

J.

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Julia:
My daughter has Anaplastic Astrocytoma 3. She had surgery and they 89-90% of the tumor. Then she had 6 weeks of radiation combined with a 42 doses of Temodar. Then she got a port put in her chest and she has an infusion two times a month, those drugs are Avastin and Irinetecan. On the first day of her second infusion of the month, she takes Temodar for five days. We were doing 400mg. of Temodar for five days, but she isn't tolerating it well. We did 400 mg. for 5 months, this month we are doing 200 mg. a day for five days. Next month we will go back to 300 mg. a day for five days and she how she does. Her blood counts get pretty low sometimes.
We also see a Naturopath at a clinic in Alaska called Avante'. Dr. Babij, the male doctor, I cannot remember his name. He specilizes in oncology. His wife is also a doctor, so I apologize I cannot remember his first name. He has prescribed: Curapro (helps cancer patients with inflammation), maqui berry (good for the brain), Glutamine powder, Cortisol manager (to help her sleep) and melatonin (to help her sleep).
I am curious about the vacinne for children. My daughter is 18 yrs. old, I wonder if she qualifies? Who was doing the study? I wish you and your sister the best. I wish we had asked them to analyze my daughter's tumor, but we did not know to do that. I agree with your frustration that they are supposed to be specialists and guide us. I am constantly trying to look up information to see what we need to know or do. God Bless you and your sister.

Edna

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

The study for Peds is:

A Pilot Study of Glioma Associated Antigen Vaccines in Conjunction With Poly-ICLC in Pediatric Gliomas
This study is currently recruiting participants.
Verified on May 2010 by Children's Hospital of Pittsburgh

First Received on May 24, 2010. Last Updated on June 28, 2011 History of Changes
Sponsor: Children's Hospital of Pittsburgh
Collaborators: Stratum A,B and E NCI R21 CA149872
Stratum C-Brain Tumor Society
Stratum D- P01NS40923
Information provided by: Children's Hospital of Pittsburgh
ClinicalTrials.gov Identifier: NCT01130077

You can more info on clinicaltrials.gov

All the best,

Julia

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Julia:

Thank you. You are very helpful and I appreciate it. All the best to you and your sister.

Edna

KellyAK2011
Posts: 22
Joined: Oct 2011

I see Dr. Babij as well. His name is Markian. His wife is Dr. Natalie Wiggins, she also works for the clinic. He is a wonderful person. I also work for the clinic, but I am on extended leave while I receive treatment for my grade III anaplastic oligdendroglioma. I use the same supplements you are using for your daughter.

I am still in the initial stage of treatment, and had my resection on 9/27. I have 9 more fractions of radiation. I was on Temodar, but my platelets dropped so I'm on hold right now. I was able to take it 29 of the 42 days. I'm hoping I can restart it next week and get a few more days out of the combo radiation/chemo treatments. Fingers crossed!

Who was your daughters surgeon. Mine was Estrada Bernard - he is an incredible man.

I have a caringbridge site that tells my story.... caringbridge.org site name is kellywhitworthak.

I wish you the best of luck in this fight.

Blessings ~ Kelly

alutiiqmom's picture
alutiiqmom
Posts: 256
Joined: Jun 2011

Hi Kelly:

Dr. Bernard is incredible! He gave us our second opinion and his diagnosis was right on. But, we were so afraid we flew to Seattle and went to Seattle Children's Hospital because our daughter was only 17 years old when she was diagnosed. She had surgery there with Dr. Jeff Ojemann and 6 weeks of radiation at the University of Washington.
Sarah is having a hard time taking all of the supplements because she gets so sick on the chemo that I can hardly get her to take the Keppra. Sarah has a caringbridge also: sarahmatthew.
Are you interested in meeting so that you and Sarah can support each other? Lately, the hardest part for Sarah is for someone to understand her chemo and how hard it is. You can email me: edna@camai.com if you want to. She does chemo with Dr. Rabinowitz at Alaska Hematology and Oncology and their whole group of doctors and nurses are awesome. I wish you the best Kelly. Let us know if you need any support and help. God Bless you. I am sorry you are facing this diease.

KellyAK2011
Posts: 22
Joined: Oct 2011

I'm going to email you! ~K

alexa
Posts: 1
Joined: Nov 2011

There is another option available, laser thermal ablation. Is not for all tumors, but take a look http://www.rwjuh.edu/laser. It can be be used in combination with other therapies, specially after 1 or 2 craniotomies. It can also be repeated multiple times.
A.

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

Thank you! I am exited to have found one more venue, one more option to explore. It is one more thing I can store in my databank and pull out this card if ever needed! Thank you again :)

J.

KellyAK2011
Posts: 22
Joined: Oct 2011

I found your info to be consistent with my own. I don't know much about nanotherapy or nanoparticles. I do know that one company NanoVirocide, is still in their infancy. They don't say much about cancer on their company site, but I was told that they have the capability to kill cancer cells in the same fashion as the viruses - by inserting a nanoparticle that attaches to the cancer cell and then unpacks its "envelope" into the cancer cell thus killing it.

I don't think any of it has made it to human trials. Maybe I'll look into if further though. I'm just too tired at the moment.

Best wishes to your sister ~ Kelly

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