Don't Fear Germs

I'm miserable. But I'm excited.

I've had a temperature for a few days. At first, I just thought it was weird how much my body was hurting. My bones, every single bone in my body was full of needles, and I joked with Dan that maybe I had contracted meningitis. (I love to throw out the impossible and laugh.)

Looking back I had been noticing for the past few weeks a pain in my lungs. A burning, hot, achey sensation that I'm not used to. On Saturday, after I had written my last blog post about my lack of exercise, I became inspired and went to the gym, punched 5k in on the treadmill, and went to town. My goal was to finish the one person race in under 30 minutes. It was a little hard with the burning in my lungs, but I was able to complete it in 29:17 so I felt amazing. I did it!! Then I proceed to hack a lung. The weird part is that the stuff in my lungs isn't getting loose so the coughing didn't last.

The weird thing is that I've been feeling hot for the last week, and achy. But I always find a way to reason it out.

This brings me to yesterday. Finally, so miserable that I couldn't move, so miserable that it was hard to walk, it occurred to me that I should check my temperature. And sure enough, 104 was hitting heavy. When I saw that I had a fever I was thrilled. I leaned over and high fived Dan. Weird right?! But it isn't weird. I had read a few months ago that when you get a fever it stimulates your immune system, including the production and release of t-cells which also happen to love to eat cancer cells.

There are several cases documented of people who get fevers and it causes a regression of their cancers.

Once I learned the fever thing, several months ago, I have been trying to catch germs when people are sick. A long time ago I read a retrospective study about people with glioma. It showed that those who get diagnosed with glioma were described as people who stated they never usually got sick or had broken bones. I thought that was interesting, and I easily fell into that group. So now, I'm trying to rectify it by purposefully enhancing my immune system by putting myself in positions where I can snag a fever. Lucky for me, my nephew is practically always sick and a few weeks ago the sweet little bugger was flaming hot, and coughing. I took deep breaths around him, and hoped for the best, even sipping on a drink he had. I did it discretely. Now, maybe I'm just crazy, but I literally never get sick. I haven't had fever since September of 2012. I specifically remember it because it was right before the most recent brain surgery and I was worried it would interfere with the procedure.

So here I am, chilling with a 100 degree temp, and although achy and physically pretty miserable, my mind is partying. I did it! I earned a temperature and as those pins and needles ravage my body, I imagine my t-cells and cytokines swimming around in my body looking for foreign invaders of bacteria, and viruses, and tumor cells! I will not take aspirin to lower my fever, I will just ride it out. And to explain my reasoning, I sent some articles to my parents and Dan so that they would understand where I'm coming from. When I talked to my mom this morning she was impressed and agreed that she would reevaluate how she handles a fever too.

A fever is a wonderful response, it's like a free housekeeper.

It looks like we've been trying to stop the fevers, when actually that is a detriment to our immune system. This is great to know! Especially if you have kids. There is a lot of information out there showing that people that grow up with fevers (as opposed to people like me who usually never get infected) have a much less probability of getting a malignancy later. Note to self - try to ride it out, but monitor any significant changes.

Anyway, I'm still a little delirious and I don't know what I'm leaving out on here, but hopefully you can get the picture and do a little research on your own.

It's miserable riding it out, I'll admit, but I'm excited about my immune response, so I'll smile through the pain.

Here's a great article from Nursing Times discussing the benefits of not giving patients paracetamo for fever. The next article is a few cases of spontaneous remission after fever. It's fascinating. There are also all kinds of research studies that you can look up online. If you're really curious, look into William Coley's treatments in the 1800's. I hope this random post helps people become less fearful of germs, and viruses and bacteria. Because there is so much that we don't know. Now, I may still be completely insane, and I may be completely off base to want germs, and to initiate fever, but heck - why would doctors try to imitate hyperthermia for cancer patients all over the world as a treatment? (It's a widely accepted form of treatment all over Asia and Europe.) There's something about this concept, and I just got my fever treatment for free! I do love a good deal. :)

Nursing Times (oh crap - they allowed me to read the article once but is now restricted to members)
http://www.nursingtimes.net/does-giving-paracetamol-to-lower-raised-temperature-interfere-with-the-bodys-natural-defence-response-to-infection/5010217.fullarticle

Fever, Cancer Incidence and Spontaneous Remissions 

https://www.samueliinstitute.org/File%20Library/Knowledge%20Center/Publications/meuroimmunmod.pdf 

Immunity over inability: The spontaneous regression of cancer

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3312698/

Fever Therapy Revisited

http://www.nature.com/bjc/journal/v92/n3/full/6602386a.html

Schedule of Treatment

Seattle is as beautiful as ever today. Just finished a quick jog around the lake, and it felt GREAT. I'm still jet lagged (only got 5 hours of sleep), but I'm starting to feel less and less punch drunk.

My MRI is tomorrow at 10:30 am. I'm nervous as ever, but so it goes, I know the drill and it can not be avoided.

Here is a main run down of my trip to Germany...

Day 1
Arrived Frankfurt and took the train to Gottingen (2 hour ride on the high speed)
Spent the night in Gottingen

Day 2
Taxi to Duderstadt (30 min ride)
Checked in at clinic for blood work and met with Dr Germany

Day 3
Leukephresis (2.5 hour allotted appointment)
Met with Dr Germany

Day 4
Hyperthermia
IV of immunotherapy (each IV included 1 billion)

Day 5
recover

Day 6
recover

Day 7
Hyperthermia (cancelled due to reaction)
IV of immunotherapy

Day 8
Hyperthermia (cancelled due to reaction)
IV of immunotherapy (cancelled due to reaction)
Met with Dr Germany

Day 9
Hyperthermia (cancelled due to reaction)
IV of immunotherapy

Day 10
Shot of my dendritic cells (13 million) primed my immunotherapy
Met with Dr Germany
Took taxi to Gottingen and spent the night in hotel

Day 11
Took high speed train to  Frankfurt and spent the night in hotel in airport

Day 12
Flew home

Each time I got an IV of my immunotherapy I got a slight fever, was dizzy, and exhausted. I slept most or all of the day after each shot. The hyperthermia was not tolerable so I only did it once. It caused massive headaches - incredibly severe. It was so much so that Dr Germany stopped the treatment. He said that the most  important treatments are the immunotherapy shots and the boswellia supplements. Both are scientifically proven to shrink astrocytomas.

From here I have the following shot schedule.....(each will be administered in NYC)


2013
February 13 (with Christel)
March 20 (with Libbey)
April ?
June ?
August ?
October ?
December ?

2014
March
June
September
December

2015
April
August
December

For years after that I only have to do three shots per year.

The first year is going to be disgustingly expensive, but hopefully it will all be worth it! :) Because I'm doing the shots in NYC (not Germany) they are around $7,000 apiece. Yikes! I already have February's trip booked. Oddly, it is cheaper to get a hotel for two nights one block from the clinic and a flight than just a flight alone. How crazy is that?!? The clinic gives dates about 4-6 weeks out, so I'll need to be flexible. The shots are always on a Wednesday, that's a guarantee.

Just talking about all of this makes me SUPER excited. I can't believe I'm doing this!! I'm still working on all the financing, but I know we'll figure it all out. One way, for sure, will be a second annual cherry sale. And this time I want to be there to help out and say hello to everybody (last year it was just too overwhelming). Dan and I are really excited to join in on the cherry fundraiser. And if it goes well we might do a follow up with the soft fruits (peaches, nectarines, plums, etc.) and then finally apples. It would be a total of three fruit sale occasions. I'm getting ahead of myself here, but it's all so exciting!! I feel really good about the fruit idea because you guys get something in return. I feel very uncomfortable just asking for money. It just doesn't make sense to me. We all work very hard for our money and I'm happier when I can give you a delicious treat. Okay, enough of that. I've obviously got jogging endorphins surging through my brain :)

Cheers to a great weekend everyone, and fingers crossed for a great MRI!

On To Immunotherapy

Good morning friends! Here's a rundown of things....

1. Immediately after procuring my treatment appointment in Germany, I had the "fertility" talk with my NYC doctor. He said, "You haven't even started the treatment, and you have plenty of time. We can discuss this large issue when I see you next." So there it is. I didn't have time to do the egg harvesting anyway. For now I can take that issue out of my brain.

2. After a ping-pong of emails between two incredibly diligent and efficient doctors from opposite sides of the country, it was discovered that my tumor tissue is unusable for an individualized vaccine. The remaining tumor has been treated in formalin which has then been placed in wax blocks. However, before the surgery I wrote about an immunotherapy that uses your dendritic cells and a virus to prime your body's cancer defenses. I am now on track to begin treatment in Germany with the Newcastle virus. If interested, you can read more below (written by doctors from my clinic). Or, if you would like to read the entire paper, please click here. As for the cost, it is the same. I will still be doing the leukephresis and multiple shots, but this time it will be with my dendritic cells and the Newcastle virus.

2.1.3 Newcastle disease virus in treatment of GBM; a tool for improving DC therapy besides dendritic cell therapy cell therapy another promising approach for the treatment of malignant brain tumors is the treatment with replication-selective viruses, also called oncolystic viruses. This is based on the fact that most tumor cells are more or less unable of an effective virus defense. This approach is also known as virotherapy. The application of viruses for cancer treatment is based on reports since the beginning of the 20th century on temporary improvement of cancer following natural viral infections or vaccinations against viral diseases. (DePace 1912). Meanwhile several replication competent viruses (mainly herpes and adenoviruses) were tested in vitro, in animal models as well as in phase I/II clinical trials for treatment of malignant brain tumors (Shah et al., 2003; Rainoy & Ren 2003; Wollmann et al., 2005). However, the viruses have to be genetically modified in a way that makes sure that they selectively infect and replicate in tumor cells. Within the viruses tested for human anticancer treatment the Newcastle Disease Virus (NDV), an enveloped poultry virus with a single strained RNA as genetic material, seems to be one of the most promising candidates. NDV is not a pathogen for humans, and is absolutely harmless causing  only mild flu-like symptoms or conjunctivitis in the worse of cases (Lorence et al., 2001; Reichard et al., 1992). NDV shows a natural distinct tropism for cancer cells. Cancer cells infected with NDV can be killed directly with the virus within a short time after injection, whereas normal infected cells are not lysed by NDV.. 

As described earlier, tumor cell lysate may be the better antigen source for priming of dendritic cells because it contains the whole antigen repertoire of the tumor. However, it has to be taken in mind that most of the antigens expressed in tumors are poor inducers of immune response and are often recognized by the immune system as poor self antigens (Vergati et al., 2010). Opposed to this adjuvant active specific immunization based on tumor cells modified with a low pathogenic strain of the NDV has been reported to achieve sustained immune responses in patients with advanced colonic cancer and kiver metastasis (Lehner et al., 1990; Schulze et al., 2009). NDV can have lytic activity on tumor cells directly as well as immune stimulating properties that affect both innate and adaptive immune responses. Infection of tumor cells with live NDV results in a potent up-regulation of cell adhesion molecules on the tumor cells surface (Lehner et al., 1990; Washburn et al., 2002). Expression of viral proteins on the tumor cel surface and presence of virus derived pathogen-associated molecular patterns (e.g. double -stranded RNA) result in breaking of host tolerance towards the tumor in vitro (Bai et al., 2002). The T cell stimulatory action of dendritic cells pulsed with lysates of NDV infected tumor cells as well as the antitumor cytotoxicity of macrophages and monocytes is increased (Schirrmacher et al., 2000; Washburn et al., 2003; Zeng et al., 2002). Finally,  NDV induces an increased production of various cytokines, e.g. Interferon-a as well as chemokines, influencing the migration, the activation status and cytotoxic activity of various immune cells (Lokuta et al., 19996; Schirrmacher 2005, Schlag et al., 1992). Clinical phase 1 and II  studies in various tumor entities have proven the safety of active specific immunization with NDV-modified tumor cells. A detailed description of the mechanisms of action of NDV modified tumor cell vaccines and results from other studies in cancer patients were reviewed by Schirrmacher (Schirrmacher, 2005).

In malignant brain tumors, case reports as well as clinical phase I/II studies have shown that treatment with intravenously applied NDV as well as with vaccines utilizing NDV modified tumor cells can induce a clinical anti-tumor response in malignant brain tumors with objective clinical responses as well as with a trend towards improvement of overall survival (Csatary & Bakacs, 1999, Csatary et al., 2004; Freeman et al., 2005; Scheider et al., 2001; Wagner et al., 2006). Recent results from our group have shown that a therapy with dendritic cells in combination with the NDV virotherapy may improve the clinical anti-tumor response in patients with GBM (NeBelhut et al., 2007, 2011). Patients were pre-treated with intravenously administration of NDV Dendritic cells were primed with NDV modified tumor cells or with NDV alone in patient with tumor recurrence. When tested in vitro, NVD primed MoDC of such treated patients induce the activation of autologous CD8+ T cells with release of IFN-y. This leads to the hypothesis that, if viral antigens are expressed on the tumor cell surface, a NDV specific dendritic cell therapy may lead to the induction of NDV specific CD8+T cells and thus to the induction of a specific immune response against the virus infected cancer cell (NeBelhut et al., 2011).

3. I now need to get blood work done within the next week and send it to Germany. It's a final check to make sure I'm healthy enough for treatment. I'm getting nervous and excited, there's a lot of medical stuff to do. Michelle, my sweet travel buddy has been researching the train system, hotels, etc. She's got her Germany travel guide and pocket German language book. As for the details of travel, MG has it all figured out, I don't have to think about a single thing :) She's the best!

When I found out that I don't have usable tumor tissue I freaked out. I completely panicked and I worried that I shouldn't spend the money on the Newcastle treatment (along with the hyperthermia). But then I started re-reading about the treatment and was reminded that it's most effective when the tumor burden is low. It's scary to spend the money, but I have to do whatever I can to aide my body's healing properties. I can't just pretend that the tumor won't grow. I have the responsibility to try every intelligent option, regardless of the cost or effort. I know in my soul that I've gotta do it or I'll become depressed. Deep down, if I don't go for it I'll know I'm not doing everything that I could, and that translates into me giving up. It's just not an option. I'm excited, and nervous, and thrilled at the opportunity. This tumor dictates our lives. It is a ticking bomb that must be dismantled.

Here's your laugh for the day. Dan sent me this photo from work on Saturday. I literally laughed out loud :)

Clinical Trial?!?

A random artichoke plant along the road off Green Lake. Beautiful!

I have big news, but I have to start at the beginning.......

I've been exhausted trying to navigate supplements, treatments, etc. It has gotten so bad that I haven't been sleeping well, and I'm constantly tired. After my most recent IV treatment, Danny and I realized that if we're going to fight to get healthy, we need to exercise every avenue. And yet, we don't have unlimited funds, so we have to be smart about the treatment choices. Instead of paying for IV treatments, which are good, we need to head for the hills for something great. So.......I contacted Dr Germany's clinic in Duderstadt. I've been gathering information about the various treatments available, including dendritic cell therapy, immunotherapy, and hyperthermia - all three treatments are very effective against brain cancer, especially when used in combination. After talking with Dr M, at the clinic, Danny and I were all in - incredibly excited and hopeful. We vetted the clinic and with no ill information around, we were convinced. We even started talks with family friends about acquiring personal private loans to help cover the costs.

As you can probably read, things changed. There's nothing wrong with Dr Germany's clinic, in fact we may still end up heading there, but guess what.....this is huge.....I might be accepted into a clinical trial. Let me tell you about it.....

There is a clinical trial at UCLA for low grade gliomas using dendritic cell therapy, headed by Dr Linda Liau. I would need to get another brain surgery to harvest more tumor tissue, it's important to use the most fresh tissue available. I would not have to do radiation or chemotherapy. The only cost would be whatever my insurance would not cover from the brain surgery, MRIs, blood tests, etc. Whatever the cost, it should still be cheaper than going to Germany, and with the fresh tumor tissue the treatment would be more effective. I double checked and since this is a phase IIa clinical trial, there will be no control group, no placebo, all patients would receive treatment, a dendritic cell vaccine personally created with their own tumor tissue. This is HUGE!! I still don't know if I'll get accepted into the clinical trial, but I'm very hopeful. Instead of heading to Germany, I might be headed to LA. Either way, we're headed somewhere, whether it be Germany or LA, something is happening.

I had been reading about the clinical trials in the USA, there's one currently being conducted at Swedish, here in Seattle, but it's for glioblastomas. I knew that Dr Liau was conducting a clinical trial at UCLA for low grade gliomas, but foolishly, I had assumed that I would have to do radiation or chemotherapy first, and I assumed that there would be a control group with placebos. This is fantastic, and exciting. The only reason I contacted Dr Liau is because my friend Jessica, who is also fighting a glioma, emailed me with correspondence. I figured I might as well email the good doctor in charge. I'm always interested in getting my questions answered, and thank goodness I did. I could have missed out on an amazing opportunity. Of course, I have not been accepted into the trial yet, but I'm hopeful. And if it doesn't work out, then, well, I'll just head to Germany. I have wonderful sulforaphane pills, curcumin, and all sorts of fantastic things that on their own could cure me in their own right, but truth is, Dan and I feel like we should attack everything from all directions....because....why not?!? Let's do this. Anyone interested in another head shaving........

Building Confidence

This is the view from the house we rented in Kauai. The trip was fantastic, hilarious, refreshing, and unbelievably memorable. But, now I'm back, and I need to figure out what I'm going to do next. Sometimes it feels impossible to sift through the different random treatments (high dose IV vitamin C, IV curcumin, hypertermia, oxygen therapy, dendritic cell therapy - need to see if UW has stored tissue from my tumor, etc.), and it's overwhelming to evaluate clinics to make sure that they're full of honest, trustworthy people. Cancer is a billion dollar a year monster, and there are many a snake oil salesmen. At times, I feel like I'm spinning in circles, engulfed by people with all of the newest cancer cures, telling me to drink $32 dollar per 36 ounce salt water that has been ionized (or something like that), drink 6 ounces four times a day and I should be cured within 6-9 months. Seriously, a guy told me to do that. He didn't even know the type of tumor I'm fighting. I'd bet that most people honestly want to help, but still, it's just too much information. I can understand why people decide to just do the standard of care.

Just as a side note, at the appointment with the radiologist on Thursday, when we went to thank him, the guy said, "No problem. I'll gladly help my colleagues to clarify and aide further treatment." So, at that appointment, Dr F (the radiologist) had an agenda to get me on board to do radiation. His job was to convince me. I feel like I can't trust these people. He also said that the other radiologists haven't been accurately reading my last few MRI scans. What the hell?!? Who do I speak to about that? I have to pay these fools. Do they know that they're playing with my life? This isn't a salad recipe, you can't just do whatever you want. This is more like a souffle - I could completely implode. Do they have no humanity? Or - is Dr F just saying that to get me on board? Who do I believe? And if they have been half-assing my reports, I think I should get a refund! I pay these people just under a couple of thousand dollars a year. I just received a bill, so I know what I pay out of pocket. After insurance, a reading of my MRI is $438. Now, I get four of those a year....so.....that's a lot of dough. And that's just the bill for the radiology reading.

My doctors sure are pulling out all of the stops to get me under radiation beams - even though for my specific tumor it will not extend my life. I've been confused about the whole agenda. It has never made sense, until yesterday while I was researching alternative options. I then confirmed with my mother, and radiation, depending on the type (whole brain, gamma knife, beam, how many beams, how many weeks, etc.) is between $200,000 - $400,000. The co-pay is $20,000-$40,000. Are you kidding me?!?!? If I'm going to spend $20,000-$40,000, I'm going to spend it on treatments that will give me more time. It's ridiculous.

I still don't understand what's happening with my artemisinin treatment. I can't seem to figure out why the two smaller areas are shrinking, yet Hermie grows. There is a chance that the artemisinin is shrinking the tumor in the way that it grew out, reversing it back to the beginning, but it's scary to risk my life on the unknown. Danny and I have gone over and over, trying to figure out what we're going to do. There are some pretty amazing clinics in Germany, and a couple in Mexico. But, it's a huge commitment to research these clinics, and it's scary. It's a big leap. But, as a friend said, "Time is life." So, instead of continuing the low doses, we've decided to start the chemo drink. My friends who eradicated their tumor, used the chemo drink, ingesting it every evening for about a year and a half, then they switched to the artemisinin. At which point most of the tumor was gone.

The drink is incredibly labor intensive. It takes about three hours to create, you have to blend things together, then cook it at 100 degrees perfectly for a long time. It's going to be incredibly tough, but it's worth a shot. This isn't something I wanted to have to do, but I have to take major steps. I can feel the tumor in my brain growing. Even Danny has been continuously noticing my deficits. I've become more frustrated too, while trying to communicate. It reminds us of when I was trying to get better after the surgeries. The worst is when I'm incredibly exhausted. I've started stuttering some, and I can feel a disconnect between my thoughts and my mouth. There's an odd delay. I'm sure that others wouldn't notice the difference since they're not around me day and night, but it's something that Dan and I notice, and we're both scared.

I feel like I need to take drastic measures to stop the growth before I start to lose my reasoning skills. I don't want to have to step aside in my active roll of care.

For now, I'm sorry for the lack of email responses, or contact with friends, but I'm completely overwhelmed. I have a serious job to do and social stuff is going to be put on hold. Thank you understanding and sending the love, support, and the prayers - I appreciate it so much, and I truly need it. After Thursday's appointment with the radiologist, my sleep has been full of fitful bouts of jactitation (learned that while reading the dictionary with Katie Jarman). I wake up in the middle of the night with my heart racing, my body breaking out in cold sweats, even in Hawaii. Last night was the first time I finally calmed myself down, and managed to slow my fear. There had been a visceral reaction to the radiologist's dictation about my scans. It filled me with fear, and for the first time, I truly realized that I might actually die. I knew that this brain cancer could kill me, but I had never absorbed the concept. I now, truly understand and it's a horrible, horrible feeling. I don't think I was in denial, I think I was just hopeful and optimistic. Now, I struggle to keep positive. Last night, laying in bed, all I could to was continue my mantra, "I'm healthy and I am strong." But, I'm definitely trying to convince myself, and build my confidence, and I'll tell you what, it's incredibly hard. This is scary.