Wednesday, 29 March 2017

Nivolumab Opdivo infusion and increased seizures?

I was going to ask a question in this post but decided to start a new one instead.

Here's our latest situation:

  • My wife has been on Optune for the past seven months, averaging about 69% monthly compliance (two months were 0, the rest were above 85%).
  • We started nivo 11 weeks ago.
  • Prior to starting her first infusion, there was a new growth, which prompted the nivo in the first place.
  • After the third infusion, there was a second new growth.
  • My wife just had her fifth nivo infusion this past Monday, March 27th.
  • Today, Wednesday, March 28th, she had two light focal seizures - she was conscious the entire time.
  • Note that we are not on Avastin nor or Dexa as she doesn't have enough edema to warrant it; at least according to her last two MRIs.

My question:

Are increased seizures a common occurrence when using nivo?

I've not been able to find anything very compelling on the topic.

Saturday, 25 March 2017

Look for Lomustine and Procarbazine

Hi all,

In china i can not find these two drugs, anyone have experience purchase them online? I found the price various a lot on different site. Don' t know which site is reliable


Tuesday, 21 March 2017


I know this is a cocktail group but since there are so many well informed people here I thought I would ask. Since my surgery in November 2010 I have been having auras on average every nine days. We've tried Keppra then Keppra with Vimpat then Depakote and now  Lamictal and  Lamictal extended release. I still have them every nine days. I've been tracking them for about five years and they are most common during exercise or strenuous activity. I have gone as long as 10 weeks but that was a one time occurrence and I don't know what was different during that time. That was several years ago. Does anyone else have auras and if so are they more common at certain times? I find it strange that I have them so common because people with full seizures don't seem to have them that frequently. This has really affected my quality of life. I hope to be a long time surviver and would love to get control of these. It is to the point where I am slipping into despair over it. Any help appreciated.

Sunday, 19 March 2017

What now? Help!!!


Our 5 year old daughter's GBM has returned.  Last month we travelled to Tubingen Germany to begin a customized peptide vaccine treatment for her.  During the course of the treatment injection 'boosting phase' she began to complain of her back hurting.  The co-injections prescribed by the vaccine protocol are Leukine which has a side-effect of "bone pain".  We thought her back pain was this but her symptoms worsened quickly towards the end of our visit to Germany and upon returning to the USA requested a spine MRI which revealed large tumors in her spine.  This came as a crushing blow to us since she had been NED since having a total resection a year ago.

She has begun radiation on her spine along with steroids which has improved her mobility.  Another brain MRI revealed very small growth in her head in the brain base and on the optical nerves.  A subsequent head MRI 16 days later shows very little growth in the head lesions so that is a good sign in terms of the brain cancer growth rate.

We see the best possible chance for her is getting her off of the steroids and ending radiation ASAP.  To this end we have started her on Avastin every 3 weeks and are not planning to perform any head radiation at the moment.  We have had all of the remaining peptide vaccine doses sent to the USA so that we can continue her peptide injections every 2 weeks once the radiation stops in the hopes that the vaccines have an effect on her tumors.

We are aware that things do not look good for our daughter but what we are really frustrated with is the lack of options we have been presented with by her oncology team.  As any family dealing with this awful disease, we are willing to go anywhere for treatment.  What would be the collective advice at this point?

• Polio vaccine at Duke _ not possible due to multi-locations of recurrence

• Dendritic Cell Therapy?

• Who is doing the best work with checkpoint inhibitors?

• Is there an institution that can pull biopsy of tumor material from blood/CSF with best results towards sequencing of the new tumors?  MSK unwilling due to swelling

• Other?

Thanks as always to this community.


Boswellia for brain edema

Hello, I have started using WokVel Boswellia Serrata 333mg , 4 pills 3 times a day, in hopes of helping with possible
swelling after RT. That is still short of the 4200mg used in study, so maybe I should increase a bit. Been using it for 3 days.   My husband is currently taking only 1mg of decadron, and when NO has tried to increase it he gets in a very bad emotional state. Has anyone had success with Boswellia ?
Thank you!!

Thursday, 16 March 2017

Vitamin c

There is very little here about vitamin c. Our naturopath recommends high dose vitamin c. What are your thoughts?

Wednesday, 15 March 2017

looking for a new NO (pediatric)

Dear all,
Has anyone had any luck with an oncologist / or just family doctor willing to prescribed  CUSP9 ? Both of the  NO's at CHOP in Philly and at Rutgers in NJ are not even willing to prescribe Keytruda at this point. What makes our case even more complicated is that my son is only 17, so he still falls under pediatrics which limits our options even further. We are in New Jersey. Thanks!

Saturday, 11 March 2017

(Arabinoxylan) Rice Bran improves natural killer white cell activity

Came across this, which is an lengthy advertisement but well cited about how enzymatically modified rice bran (EMRB)/Arabinoxylan substantially increases the cytotoxicity of natural killer white cells.

Here's the NCBI abstract:

My question is this: If someone is taking a PD-1 inhibitor, would it make sense to also supplement with this or is it akin to putting gas on a fire?


Friday, 10 March 2017

Hello, hoping for some advice. My husband was dx Grade 2 Astrocytoma in Jan 2016. Since the tumor was so wide spread in 3 diff lobes and MGMT methylated we tried  TMZ only, bc RT couldve caused cognitive decline. He did TMZ for 6 months with stable scans. But then went off for lumbar fusion surgery bc in so much pain. (Long story... surgery was disaster and ended up on walker and horrible pain afterwards) He began having seizures, Nov 28th so we had an MRI done Dec 1st of 2016 which showed mutation to GBM in a sphere  2cm in medial temporal lobe and also enhancement in the cerebellum both sides. He had craniotomy on Dec 16th to remove spherical tumor. We were told after surgery that RT was a must, so we met with RT oncologist on Jan 3rd for mask fitting. In the meantime, while waiting for RT to start my husband began having headaches and mild confusion. A MRI on Dec 17 showed the tumor had grown after craniotomy 10 days earlier.  It took a long time to get scheduled for RT, but he finally started Proton RT Jan 24th 2017. He finished Chemoradiation on March 2nd, after 28 sessions. Dr thought that would be good to stop a little early bc he us 80. He was receiving 1.8 gy per session. But to a large field. 3 diff angles. He was confused during RT, but Dr insisted it was from valium he was taking for claustrophobia (bc of mask) so we tapered him off valium last week of RT. It has been 15 days since he has had any valium and his confusion seems to get worse daily, and he realizes it. He is very devastated and says that he has lost his mind, and thinking skills. Im trying to encourage him not to give up he may get better.  It has only been 8 days since finishing RT, but I am worried this confusion is either swelling from RT or tumor growth. I called Dr yesterday and they want me to increase his decadron, which they have had him on entire course of RT 1mg in morning, to 2mg.  And just wait for our follow up on March 28! Hello! That is a long time to wait I worry if it is growing Im giving it all that headstart, but the question is: can you get an MRI this soon after RT that can distinguish btwn RT and growth? My other question is, Has anyone had confusion like this during and after RT? Thank you so much for help❤I thought of trying Boswellia, but pharmacist said it could interact with other drugs.

Thursday, 9 March 2017

Early reccurance? please help

Good morning all,
I have posted a story of my husband last year, but now I am in a black hole and l need help.
He was diagnosed with GBM IV October last year. He had big tumor in right frontal lobe over 6cm diameter. After some time we have found out that it wasn't total resection with some tumor left in corpus callosum and lodge. Till the end of the year he had finished his 6 week course of chemo and radiotheraphy. Then he was switched to monthly TMZ.
At that time we also have started vaccination with NCV because we didn't have fresh tumor tissue for DCV. A week after each vaccine he had seizures despite the fact being on Keppra and Depakine. For the first time we thought it was time coincidance. But after second he did extra scan and yesterday we found out he has two tumors - one in the lodge 5cm and second 4cm crossing corpus callosum in left hemisphere and huge oedema.
Today neurosurgeon told me they won't operate and that the treatment is over.
He is on meds from Cusp-nd protocol from the pretty begining, his tumor was MGMT promotor methylated so I don't know what has happened and what to do.
Can vaccination have such a huge impact on scan?
I don't know if we should try
rechallange it with metronomic TMZ,
try different chemo
go on Avastin
Perillyl alcohol
Any thoughts....
I thought we have a little more time together...

Monday, 6 March 2017

canadian pharmacy on-line

Our NO is being extremely unhelpful getting prescriptions for repurposed drugs - has anyone had any experience with online orders from Canada? I am looking at . I am just afraid to order before I hear some feedback since I have already got burned by ordering sativex (from a different site!!!) that never arrived. Thanks!

Sunday, 5 March 2017

Treatment questions

I have a few questions I've been thinking about and would love your opinions. Background first, my husband is fighting an AA3 right insular brain tumor. Surgery removed 80% of the tumor and then an emergency surgery three days later removed nearly his entire right temporal lobe.  His tumor was never tested for MGMT status but it is IDH1 mutated. Surgeries were in July 2016 with TMZ and radiation following in September and October.  He is currently finishing up his 5th cycle of TMZ, been wearing Optune since the end of November and will be receiving his 5th round of NDV infusions at the IOZK clinic this coming week.  Last MRI done in early January has shown no tumor change from his original surgery.  My questions are:

1. Research has shown that patients who complete 12 rounds of TMZ often have longer periods of PFS. However, vaccinations that would begin in May at the IOZK clinic require that he discontinue TMZ or else risk them not working. We are spending all our savings to do this treatment. What I'm wondering is if we should continue on as planned with 6 cycles of TMZ and then vaccinate or try to push back vaccinations to complete 12 rounds of TMZ and then do vaccinations?

2. Seizures endured during his two week hospital stay in July required 4 different medications to calm my husbands seizures. Before being discharged, his medical team were able to get that down to two medications: Keppra and Vimpat. He was prescribed his maximum dose at 3000mg and 400mg respectively. Since learning of this website and studying different supplements and such, with all the pills he is swallowing he's slowly weaned himself down to 2000mg and the occasional 200mg if he remembers his lunch medications. His NO has never been particularly interested in bringing any of his seizure medications down, probably because of his chart notes. At our last visit our NO was questioning his moods. Asking if he seemed more agitated than usual. I lied and said no because I was worried that she'd take him off of Keppra (the medication we were discussing). My understanding is that it helps with MGMT status. So finally my question is, should I try and keep him on Keppra for its benefits or let them change his seizure medication to Gabapentin?

Thank you for any insight in advance. I'm really wondering what others might do in our situation.

Friday, 3 March 2017

What's next?

A little background -- my wife (56) had a 95% resection on 3/29 of last year, did the chemo/radiation and the 6 month 5/23 TMZ regimen that was finished last month (had some delays with low platelets along the way).  We just got our latest scan and things are basically clear -- and life is pretty normal.  Yes -- we are well aware that we have been very fortunate!  Upon asking the NO what's next the SOC continued i.e. we just wait, do nothing and do another scan in 2 months. The NO said she wanted to "give your wife's bone marrow a chance to re-charge" (meaning platelets).   I mentioned metronomic TMZ and she shot that down saying there was not any evidence to support its use. ( I should note that my wife's tumor was methylated and showed a strong positive for EGFRvIII).

It's frustrating not to be able to take some proactive approach to keep this from coming back.  I do have my wife taking curcumin and PSK/Turkey tail but she's not interested in doing anything more that than with regard to supplements.

Are we truly stuck and not able to do anything until the dreaded recurrence happens? As far as I can tell you can't even get involved with a trial unless you have a recurrence.  Any thoughts/suggestions are appreciated. Thanks in advance.

Thursday, 2 March 2017

Radio/Chemotherapy vs Osteonecrosis

Hi, I would like to know if Radio and Chemotherapy could generate Osteonecrosis. Recently my niece received the diagnosis of Osteonecrosis (after a MR), she has had pain located in her hip, and a little limp. Now we are consulting the best way to heal, but we have doubt about if it’s advisable to stop de chemotherapy.

My niece after two operation (she has a GBM no methilated) she was treated at the same time with radiotherapy and chemotherapy for  6 week, and right now she is taking the 3rd cyclo of six (temodar 5x23 about 360 daily).

I’m looking forward for your answer.

Sincerely, Jose MÂȘ


Dear all,
We just came back from the second visit from IOZK with a list of CUSP9 drugs:
2. naproxen
3. antabuse
4. minocyclin
5. propranolol
7. Valproic acid

The only one that seems to be available over the counter is naproxen as Alive. I saw also antabuse on-line at Canadian pharmacy, but the rest are definitely prescription in the US. Does anyone have any experience getting these? Thanks!

Very intresting read

I would love to hear stepehens views on this

Wednesday, 1 March 2017

Not sure this is news or not.

Perillyl alcohol formulation

This was sent to me by a patient caregiver and was written by someone with a PhD in pharmacology.  Of course the first hurdle is obtaining the perillyl alcohol in the first place.