Tuesday, 24 July 2018

Herbal remedies for brain tumors?


I was recently diagnosed with a low grade (grade 2) diffuse, infiltrating astrocytoma.  I am probably in the best situation possible (male <35 years of age), the tumor was in my right frontal lobe and not near anything critical, the neurosurgeon was able to achieve a total general resection with no deficits or complications after surgery.

However, after reading through some literature I became intrigued by this paper on herbal therapies for patients with poor prognosis brain tumors: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5809810/ which seems to have helped a few patients that had a much worse prognosis than I do.  

I was curious to know if anyone on the forum has come across this paper or tried similar herbal remedies?  My main concerns are: 
  1. I don't know how to evaluate whether or not the authors are reputable or qualified for this kind of research, does anyone have any insight on how to do so?  I know the study is not meeting the standard for a true medical trial since there is no control group, etc. but I'm willing to give it a try if at least the authors/source of information is somewhat reputable. 
  2. Getting the herbal remedy right, I did reach out to the author and they are willing to ship their herbal remedies to the US for a fee and they recommend taking the treatment continuously for ~1 year based on their ongoing research.
  3. I'm not sure if anyone has tried similar herbal remedies with any success? 
If you could answer any of my questions it would be great.  Please do reply to this post if you can. 

Thanks! and of course, wishing you health and happiness. 

Monday, 23 July 2018

Right to Try (for U.S. patients/advocates)

Hi guys,

I'm wondering if anyone here has pursued the Right to Try law here in the United States? Searching the blog, I couldn't find anything...

My brother is living in Texas where the law has been passed and I've obtained the document provided by the organization website to present to his doctors. (The document is linked here under "How do I initiate a request?" or here is a Google Doc version I uploaded which is the exact same)

James would like to try DCVax-L, if possible.

In order to produce the DCVax-L vaccine, you need to supply fresh or preserved tumor tissue. I've contacted the drug company, Northwest Biotherapeutics https://www.nwbio.com/) and was told:

"In order to manufacture DCVax-L, we usually require 2-3 grams of frozen tumor tissue, although we have worked with less in certain circumstances.  The tissue must be stored frozen without any chemicals or preservatives and not in saline or blocks of paraffin."

I've confirmed that the tissue from his previous resection has now been transferred to paraffin so is unusable.

James's doctors have already said another resection is not advisable due to the location of his tumor progression. However, assuming we could get a biopsy to have some fresh tissue, I'm wondering if this would be a block for his doctors to go ahead and pursue the Right to Try submission to the drug company.

Would they be likely to submit the document and start the legal process if we don't even have the tissue?

It would seem foolish to do a biopsy if we weren't for sure going to be a candidate for the vaccine.

(Again, I'm unsure if a biopsy is possible at the moment but should find out this week.)

Additionally, I requested more information from NWBio about the Right to Try law and she didn't address it with detail, but just assured me that without tissue, nothing could be done.

Does anyone here have experience with kickstarting this Right to Try process? Any tips or advice would be much appreciated.

Link to my first post outlining James's current condition for context.

Thursday, 19 July 2018

The trembling of the hands and the change in facial expressions when falling asleep

My mom's hands are moving and her facial expressions change when she falls asleep and sometimes in a dream. She does not remember this. It looks a little scary.

Half a year my mother took valproic acid (Depakin) 500mg a day. However, a month ago an electroencephalogram showed the absence of an epileptic activity and we stopped taking it. Perhaps, the trembling of the hands and facial expressions when falling asleep increased.

What could this mean?

Wednesday, 18 July 2018

Fungal lung infection (cryptococcus) - anyone had this?

My husband was diagnosed with a fungal lung infection that's supposedly common for immunocompromised patients...but I've not seen much mention of it in conjunction with GBM.  In some cases, the fungus can enter the brain via cerebrospinal fluid, possibly leading to meningitis. 

The prescribed medication for the non-CSF version is a six month course of Fluconazole, which can impact liver function.  I'm guessing this may mean our NO won't proceed with additional 5/23 cycles (cycle 3 just completed, will hear about the MRI on Thursday), but the NO and the infectious diseases physician are still trying to figure out how to proceed.  Anyone have experience with this set of circumstances?

Seeking Update on Experiences with Dendritic Personalized Vaccines in Germany

I have begun researching personalized dendritic vaccines in Germany and have found several clinics which offer them (some from this blog). I would be incredibly grateful if people would share/update their experience with dendritic vaccines. In particular, I am hoping to learn:

Which clinic you or your loved one sought treatment at?
What stage of illness you sought treatment (post-surgery, post-recurrence)?
Whether treatment was effective and if so for how long?
What the clinic used to produce the vaccine (fresh sample, paraffin sample, blood sample, etc...) .

Clinics I have begun looking into include: IOZK, Unifontis/Dr. Drevs, Hallwang, NextGen Oncology, CeGat and Praxisgemeinschaft/Dr. Nesselhut.

I am seeking treatment for my husband who is 53 yo. We live in the U.S. and have 2 children. This is my first time posting and I want to express my immense gratitude to all who have posted. It has been an incredibly helpful and sustaining resource. My heartfelt compassion to all of you.

Tuesday, 17 July 2018

Lomustine Side Effects

Hello everyone,

New here, but have been reading since last Februrary when my brother, James (33 at diagnosis, 34 now, married with 3 kids under 6), was diagnosed with Stage 4 GBM. He had a full resection in March of 2017 at UT Southwestern in Dallas and had the standard of care with TMZ + radiation. He also followed a loose ketogenic diet and was doing some supplementation then (I'm not quite sure what - we don't live in the same state so my mom is our "middle man" in communicating everything to me!). He then enrolled in a clinical trial to receive Nivolumab in combination with chemo.

James tolerated this treatment well in terms of side effects, but was kicked out of the trial when he showed regrowth.

His doctors recommended to put him on Lomustine. He was nervous about the possibility for severe lung side effects and decided to forgo taking this chemo (this was a few months ago). He took a trip to Italy with his wife, ate what he wanted and really had a good time.

Upon return, his next MRI showed aggressive growth and growth in what was once a "spot" but now is clearly a tumor. Additionally, it is growing toward the "midbrain" so his doctor said another surgery was probably not going to be a future option. This was in June of this year. His doctors were also pretty upset that he'd chosen not to take the chemo. My brother did not communicate this with them, so I know that was part of the frustration and I'm wondering how this has impacted (if at all) their attitude toward James as a patient.

I was fortunately able to attend this appointment with him and the doctors were pretty upset to begin with. I also brought a list of questions based on the PDF Ben Williams and Stephen have created/maintained. They answered all of my questions, but I think they may have assumed James didn't go through with Lomustine for the first time because we read the book - which is not the case. Anyway, I got an odd vibe from both doctors after asking my list of questions...

After this appointment, James decided he would take Lomustine. His doctors also said they could and would combine it with Nivolumab, but due to some process of insurance having to deny it twice before they could get it, he has not received an infusion of that yet with the chemo. Their plan is to do this on his next appointment and with his second round of Lomustine. His next appointment is next week, I believe.

Sorry that was a long intro...

Now for my question: can any of you share with me your experience of side effects with Lomustine? James took his first pill on June 25. Since then his state has been:

  • bedridden for the majority of the time
  • vomiting/nausea (he's taking Zofran for this)
  • mobility of his right side is worsening all the time. He cannot move his right arm/hand. He picks it up with his left hand to move it around. My suspicion is this has to do with too high of a dose of DCA after reading more here. He stopped taking that just a few days ago.
  • difficulty walking - now uses a wheelchair
  • headaches
  • cannot speak very much or very well
  • difficulty opening eyes
Now, there are times when he is NOT like this and has energy, but the majority of the time since taking his first chemo pill, his side effects have been what I've listed above.

Is this normal?

My mom has reached out to the doctors and they ordered him to get blood tests done. After those were submit, they never replied with anything regarding his symptoms. I'm curious if this has anything to do with what the doctors think of my brother's future or if there are communication problems (maybe a bit of both).

I would really appreciate some insight into what you all have experienced with this chemo. I've read through a few posts and am trying to discern if his symptoms are side effects or if something worse is going on.

Thank you!

Wednesday, 11 July 2018

Gliosarcoma early recurrence?

I am mostly reader of this blog,  and I found many useful information and hope. Simultaneously, I tried to be as anonymous, as it is possible. Sometimes I afraid to even name the beast we face.

But now our situation looks dramatic and I seek help and additional information.

The short story: a young adult, diagnosed almost one year ago with a front lobe tumor (gliosarcoma). There were no prior symptoms, only sleepiness prior to a major seizure.

After double surgery at the end of July 2017, we spent a month recovering from complications. Next, our doctor administered irinotecan+carboplatinum. After 2 cycles of the chemo, we passed through 6-weeks radioteraphy with maximal possible doeses and TMZ administered daily. Next, from December: once cycle of TMZ and 3 cycles of TMZ+CCNU. MRI's at the early January and at the middle of April indicated stabilization.

Unfortunately, MRI at the end of June reveals contrast enhancement and a new diffused area outside the primary site.  Our doctors say its most likely non-resectable recurrence and or progression, and they changed the chemo to a new combo (topotecan and dacarbozine). I have asked, whether it could be a pseudo-progression, due to radiotherapy, but they exclude that.

Since December, when I discovered this blog and the Ben's book, we introduced some supplementation, including PSK/grifolan, bee-honey products, curcumin, berberine, fish oil, boswellia, 5-10 mg of melatonin, syllimarin. I was very afraid of including any of ``the regular drugs'' in coctails mentioned here.

The current neurological status of the patient is essentially stable and reasonably good, and we did not notice any particular symptomps indicating the progression.

I seek for any information, whether the new drugs could be supported by the coctail approach, and perhaps there are persons who have undergone a similar treatment. I am thinking on a few most frequent drugs (CQ, metformin, celebrex, melatonin in high doses), as well as POH.  Unfortunately, we have no information on the genetic status of the disease.

I would be also very grateful for your advice and/or information on clinical trails in Europe, we live in Poland and US/Canada are likely non-available for us.

Repurposing drugs for GBM

I think it's a very recent review paper, which you may find interesting

Abstract: Glioblastoma multiforme is the most common, aggressive and lethal type of brain tumor. It is a stage IV cancer disease with a poor prognosis, as the current therapeutic options (surgery, radiotherapy and chemotherapy) are not able to eradicate tumor cells. The approach to treat glioblastoma has not suffered major changes over the last decade and temozolomide (TMZ) remains the mainstay for chemotherapy. However, resistance mechanisms to TMZ and other chemotherapeutic agents are becoming more frequent. The lack of effective options is a reality that may be counterbalanced by repositioning known and commonly used drugs for other diseases. This approach takes into conside ration the available pharmacokinetic, pharmacodynamic, toxicity and safety data, and allows a much faster and less expensive drug and product development process. In this review, an extensive literature search is conducted aiming to list drugs with repurposing usage, based on their preferential damage in glioblastoma cells through various mechanisms. Some of these drugs have already entered clinical trials, exhibiting favorable outcomes, which sparks their potential application in glioblastoma treatment.
Unfortunately, this article is not open access.

Monday, 9 July 2018

Optune - sensitivity to conductive hydrogels - what to do?


My Father suffering from redness and itching that make from the op-tune conductive hydrogels

We Cant find any solution for this, and this is very frustration problem?.. anyone has any idea or tip how to win this battle against  the crazy 
itching and red wounds?


Saturday, 7 July 2018

Perampanel for uncontrollable seizures and tumor volume reduction

New study:  Seizures and Tumor Progression in Glioma Patients with Uncontrollable Epilepsy Treated with Perampanel.

https://www.ncbi.nlm.nih.gov/pubmed/29970574  (abstract only)

http://sci-hub.tw/10.21873/anticanres.12737  (PDF download from sci-hub)

"Obvious seizure control was observed in 10 analyzed patients (100%) and 6 patients (60%) became seizure-free"

"Tumor volume and peritumoral edema within 6 months were volumetrically analyzed by MRI-FLAIR images, and the volume changes were evaluated. The tumor volume decreased in eight of 9 patients during 6 months by FLAIR image (Figure 2) and increased in one (Case 9) of 9 patients"

See also

Seizure response to perampanel in drug-resistant epilepsy with gliomas: early observations