Tumour Primed Dendritic Cells

Posted on July 22, 2013 by Ren

20130722-152419.jpgI have been getting Dendritic Cell vaccines from Dr. Nesselhut in Duderstadt for two months now. It is my view that he is the world’s foremost authority on immunotherapy. But…..

The dendritic cells have been mostly primed with NDV antigens as part of the Newcastle Disease Virus Treatments. I also had a Dendritic vaccine primed with P2X7. The problem is that all research that I came across suggests that dendritic cells primed with the actual tumour tissue is the most effective.

I discussed this with both Dr. Nesselhut Senior and Junior, and they can prime dendritic cells with tumour tissue as it turns out. The problem is that they need lots of tissue (1cm cube). Such a quantity can only be obtained during surgery, or by laparoscopic biopsy. Surgery is not an option for me, and laparoscopic biopsy I feel is just too risky in terms of peritoneal spread. Nesselhut did not recommend this either.

A needle biopsy is not an option I was told, as it does not yield enough tissue to work. Using circulating cancer cells in the blood stream is another possibility, however Nesselhut does not offer this and is sceptical about its efficacy anyway.

Hallwang also offer a Dendritic Cell Vaccine. They use either the circulating tumour cells or tumour tissue from a needle biopsy to prime their vaccine. Hallwang claim to have access to a large modern lab (Which I assume is RGCC) and this may give them an edge where it comes to priming the dendritic cells. I just don’t know. The main drawback with Hallwang is the significantly higher cost of the treatment. I guess I won’t know how well it works unless I give it a try, and its something I feel that I have to try.

To collect the tumour cells I had a liver biopsy. I was told that this is more effective than using the circulating stem cells, which would involve just a simple blood draw. This is the reason why I had to pass on the direct to liver mitomycin injections, as it was a choice of one or the other.

I had a liver biopsy in Australia before, so I thought that I knew what I was in for, but the germans always manage to surprise. The first hint that something was going to be different was when they told me that they would put me to sleep for the procedure. The biopsy in Australia was done under a local anaesthetic only. I was perplexed, but quite welcomed this, as I remember the biopsy being very painful despite the anaesthetic.

The Australian biopsy used a type of a spring loaded needle gun. Once it was inserted into the liver, it would fire and collect a thin sample core. It was painful but after the procedure there was just a small pin sized hole. No drama. It was quite surprising then to find quite a large hole in comparison this time round. What sort of sized needle did they use? No wonder they did not want me to be conscious for the procedure.

I later found out that they use a thin flexible tube/needle, that can be navigated through the liver. To use it however, they need to make an incision at the entry point. It healed well and was not a problem really. It was just unexpected and I will be left with a small scar.

The sample along with some of my blood to culture the dendritic cells from, were shipped to the lab and the vaccine should be ready for me next month. Looking forward to this. It will be most interesting.

Posted in Dendritic Cell Vaccine, My Journey, Treatments | 3 Comments

There is Hope

Posted on July 23, 2013 by Ren

20130723-105945.jpgIts quite inspirational to read first hand accounts of how an incurable stage 4 cancer can be beaten when one takes the responsibility for ones treatment and looks beyond mainstream medicine, which to be honest offers little to no hope for a cure.

An email I received recently falls into that category and with the author’s permission, I would like to share it with you:


I have been following your blog and praying for you and your family. Two years ago I was diagnosed with an aggressive stage 4 breast cancer with liver metasis. I am now cancer free! I did a lot of research and complimentary and alternative medicine therapies. (My background is in economics, business and I have an MBA). I applied all of my research abilities, determination and drive into learning about cancer and various treatments – much the same as you have. I quickly learned that I had to be the ” president and ceo” of myself, and that conventional care really offered very little – track record of 30 or 40 years of failures; no plan for me.

In March of this year I went to Duderstadt to see Dr T. Nesselhut for dendritic cell therepy. At this point it is a preventative measure. I very much live in a cancer preventative mode. It was Dr Ralph Moss of www.cancerdecisions.com that suggested I go there. He also reinforced the ketogenic diet to starve the cancer, I was already on it.

What I really want to share with you is this “ketogenic diet”. I believe it was the perhaps the most important type of therapy that I did and that it largely contributed to my current state. I currently stay on this diet for prevention.

It is basically a no sugar, low carb, moderate protein and high fat diet. The idea is to starve the cancer of sugar. Sugar (and carbs) are what feeds cancer. This basic research was done in the 1930’s by a German, Dr Otto Warburg, and he won a Nobel medical prize for this work. Then the chemo drugs started coming on stream and the pharmas had it sidelined. There is some great research on this with regards to curing and managing cancer. You essentially starve the cancer of its food supply. Make no mistake – cancer is a metabolic disease.

It is very similar to the Atkins diet. (Many conventional hospitals use this diet to treat epilepsy. It started in the 1930’s at the famous John Hopkins Hospital in the US. Many kids have completely cured epilepsy with this. There is a movie starring Meryl Streep about Hollywood’s famous director John Abrahamas son who had severe epilepsy and was cured – it is called “Do No Harm”).

My CAM doctor put me on this diet the first day I met him and my 4cm tumor began to shrink – I went ahead with the mastectomy 2 weeks later anyway.

Just this past year a lot of information has become available on it regarding cancer. The best place to study this is at www.mercola.com
You can search in his library and it is absolutely incredible – so much reliable research, and great interviews with the doctors – Seyfried and Agostino. Please watch these.

Dr Thomas Seyfried of Boston College Massachusetts in the US is really the front runner (besides Mercola) of this. He has a very good book “Cancer is a Metabolic Disease”. In video presentations – he is very assertive and states “the standard of care is failing us”. He believes and his research indicates that sugar is the primary fuel for cancer (protein can be if you eat large quantities and not enough fat- the liver could convert some to a sugar). I use the Precision Xtra by Abott labs to measure blood sugar and ketone – this one is suggested by both – Seyfried and Agostino.

Most of the research has been done on brain tumors, and there is a lot of “anecdotal” cases where people have cured pretty much all types of cancer. THIS IS SO EXCITING, and so simple. Elaine Cantin has a book called “The Cantin Ketogenic Diet” which a very easy read, very practical tips, and she cured her breast cancer with it. Dr. Agostino an associate professor in a medical school in Florida is also a great wealth of information – his interview is really good (he likes hyperbaric oxygen too).

I know that you like to research, and that you are very good at it, so please go to www.mercola.com to search the ketogenic diet. It is certainly not flakey of faddish – it is based on the hard solid research of Nobel prize winner Dr. Otto Warburg, – that cancer feeds on sugar! I bet that if you tried this for even 2 weeks that you would see a reduction in cancer on your next scan!

Every time I read your blog, think about you, and pray for you, I think of how I need to tell you about this. I hope I am not being too forward – but I’m sure you understand I am talking from one stage 4 to another (I will always carry the diagnosis apparently).

Please keep in touch with me.

Thank you
Donna

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Ren,

I do not understand your particular situation regarding the suitability of the keto diet. I understood that it would work on all cancers since sugar is the primary fuel. This could be well worth revisiting.

I also took the 2DG during my chemo treatments, and I took DCA as well – I hope you have success with these like I did. The research I did on DCA is awsome – it looks very promising! I had peripheral neuropathy which may be attributed to this (or it could have been my chemo). I had this quite severe, but by one year later it had cleared up by more than 90%.

Regarding the cancer blood tests I did the CellSearch (a Johnson & Johnson product) test for the tumor and stem cells – I did this in March and the result came back zero! Dr Nesselhut wants me to do this twice a year.

Dr Nesselhut works with Dr Raymond Chang in New York. He is a CAM oncologist – perhaps he may have some ideas for you. Dr Chang has a book out called “Beyond The Magic Bullet – The Anti-Cancer Cocktail”. I do not see Dr Chang because my CAM doctor, Dr. J. William LaValley is incredible and he appears to be on the same page as Chang, although he does not know him and hasn’t read the book. BTW LaValley and Mercola are great friends. Regarding all the progressive therapies you do, you likely have very good doctors.

Recently I was in a study for a sustained release curcumin supplement. This supplement (spice) has been extensively researched and there is lots of evidence that it causes apoptosis. The objective of this study was to measure the absorbability. Apparently it will be the best curcumin supplement on the market for absorbability. It is expected to be available commercially soon. I am sure you know all about curcumin since Mercola is all over it.

In your blog you mentioned the Coleys vaccine. Is this something that you would consider? If i were to get cancer again this is one of the treatments high on my list. (I researched him as well).

Take care,
Donna

————————————————————————–
Ren,

I did Qi gong (still do it) when I was undergoing my chemo as well. I just happen to discover it in the middle of my treatment cycles and felt so strongly about it that I felt compelled to postpone chemo treatments to go to Minnesota MN for private sessions with Master Chini Lin. I also learned how to do the exercises by myself, and met many people who cured cancers with this therapy. www.springforestchigong.com is where I learned about it. On this website you can download audio – I particularly like the “energy breathing” I downloaded it on my ipod and do the 20minute energy breathing whenever it is convenient (when I go to bed and when I wake up)- it is powerful – I visualize the cancer cells smoking away from my body. Master Lin describes how you can renew all the cells in your body.

When I did this during my chemo I layed down on a “biomat” – it is an infrared heating pad. I did lots of things – and something worked – this was just one of the things I did. The infrared heat penetrates into the body and the mat can probably penetrate deeper than it would if I used an infrared sauna. Qi Gong exercises, guided imagery, and the biomat were some of the things that helped me through my ordeal, and I just want to share this with you. It was DrLaValley who suggested this biomat. I would get my temperature up to 101.5 degrees F. There are many distributors of this on the internet.

Cheers,
Donna

Posted in My Journey, Treatments | 1 Comment

Tarceva

Posted on July 23, 2013 by Ren

20130723-131914.jpgTarceva is the trade name for Erlotinib Hydrochlorodine. It is a small molecule that acts as an EGFR (epidermal growth factor receptor) inhibitor.

It is used to treat several cancers, mostly non-small cell lung cancer and pancreatic cancer. It is most effective in cancers with EGFR mutation, but it has been shown to have some benefit even with EGFR negative cancers. Cancers with a KRAS mutation are usually EGFR negative. In patients with the EGFR mutation, the response rate is about 60%. In trials, the addition of Tarceva to chemo regimens extended the average overall survival by 3.3 months. A test for the EGFR mutation is available through Genzyme.

Tarceva is taken daily in pill form.

Tarceva can he used for a limited time as the cancer develops resistance, usually within 8-12 months.

Side Effects

The most common side effect is an acne type rash. This is usually restricted to the head, face and neck areas. Studies have hinted at a correlation between the strength of the rash and the response. The stronger the rash, the better the prognosis. The rash should resolve itself even with continued use.

Other side effects include diarrhoea, loss of appetite, fatigue and partial hair loss. The more rare side effects include hearing loss and interstitial pneumonitis.

Personal Experience

I have been prescribed Tarceva for my colorectal cancer. This is an off-label use of the drug as it has not been approved for CRC. Unfortunately I am KRAS positive, so Erlotinib will most likely be less effective.

Five days after starting Tarceva I developed the rash. The rash resembles small, puss filed boils, mostly around the nose area. They are slow to heal. They are quite painful and the rash is getting worse. That should be a good thing. I have also developed sores on the edges of my tongue.

Posted in My Journey, Treatments | 1 Comment

Removab 3.3

Posted on July 24, 2013 by Ren

20130724-204433.jpgMy liver recovered enough that I was able to do a third Removab treatment in this cycle. Typically they always increase the dose, but in this case they kept it at 10 micrograms. That was a mistake.

Firstly they made me get up at 4:30 in the morning so that I could start the treatment at 5am. It was tough getting up after the past 3 weeks, which were pretty full on. And as it turns out, it was probably for nothing.

Unlike last time, I had absolutely no reaction to Removab. Not even a mild fever. I was very disappointed. The next day’s blood tests showed a mild increase in liver enzymes, but no change in white blood cell counts. These should go down as they are used up attacking the Removab tagged cells. But as Removab is a tri-clonal antibody, there is still a chance that the macrophages reacted to the second antibody. This would elevate the liver enzymes, but not raise the temperature. Failing that, the other possibility is that my body developed antibodies to Removab and these mopped it up before it do its work. Hope not.

Posted in My Journey, Removab, Treatments | 1 Comment

Treatment Plan

Posted on July 26, 2013 by Ren

20130726-120611.jpgDr. Kopic, the resident Hallwang oncologist worked out a treatment plan for me for the next month. It is as follows:

Hallwang Treatment Plan

Xeloda 500mg 3x daily
Avastin 15mg/m2
Mitomycin 1x per month, 48hr pump
Mg + Inzolen IV 2x per week
DCA IV 1000mg 10 days on/10 days off
Vitamin C IV 15g 3x per week
Selenase IV 2mg weekly
Tationil 2.4g IV monday to friday
Acetylcysteine IV moday to friday
Hepa Merz IV monday to friday
Sodium Bucarbonate IV 3x per week
Alphalipogamma 600mg IV monday to friday
Lektinol injection, 2x per week
Galactose weekly
MPA 250mg in the morning
Xarelto 10mg in the morning
Vitamin D 20000IU once per week
Q10 daily
Genistein 80mg morning and night daily
Quercetin 500mg 3x per day
Aloe Vera Juice 10ml 3x per day

Tumour primed Dendritic cell vaccine
Chemoembolization

Protocol from other clinic:

P2X7 primed Dendritic cell vaccine
Unprimed Dendritic cell vaccine
Gamma Delta cell stimulation with Zometa
Donor Gamma Delta Transfusion
Vitamin C IV 90g, 5 consecutive days
B17 IV 7 consecutive days
IPT 2 per month
Thyrozol 3x daily
Trypsin & Chemotrypsin, 5x a week rectally
Pancryatic Enzymes 2x per week

I will be adding to the above:

2-deoxy-d-glucose 4g daily
phenylbutyrate 10g daily
modified citrus pectin
esiac tea daily
dandylion tea daily
phoenix tears daily
calorie restricted ketogenic diet

I was not happy going back onto chemo, but both mitomycin and xeloda are low dose. I had no side effects from the mitomycin, and Xeloda I will start next week after I finish my Immunotherapy treatment in Duderstadt, so will report on that later.

My biggest hope is for the metabolic therapy involving DCA, 2DG, Phenylbutyrate and Galactose in combination with the calorie restricted ketogenic diet.

After consultation with Dr. Kopic, we decided to discontinue Tarceva for the time being. Dr. Kopic believes that I am doing too much already this month (no kidding) and wants to keep Tarceva in reserve. He was very happy with my response to it. (Of course he was happy, it was not his face that broke out in small but painfull puss filled boils all over.)

Posted in My Journey, Treatments | 3 Comments

Ketogenic Diet Revisited

Posted on July 26, 2013 by Ren

20130726-220914.jpgI tried the ketogenic diet a while back and managed to stick with it for about 10 weeks. I must say that it was the hardest diet that I had ever tried. Vegan was a breeze in comparison, though I very much like my meat. The ketogenic diet involves eating almost no carbs, little protein and lot of fats. This is not as easy as it sounds long term.

The aim of the ketogenic diet is to place your body into ketosis. What this means is that the body switches from burning glucose to using ketone bodies (fats) instead for energy. Normal cells have no trouble with this as it is an evolutionary adaptation. Cancer cells on the other hand have damaged mitochondria and can not use ketones for energy. By depriving them of glucose, the theory is that the cancer cells starve and die. The second theory is that many cancers use insulin as a growth stimulant. On a ketogenic there are virtually no carbohydrates which means no insulin spikes to drive growth.

Unfortunately my ten weeks on the gruelling ketogenic diet yielded no results. No tumour die off and no shrinkage. So what went wrong and why am I doing the ketogenic diet again?

The main reason is that I am about to start taking a daily dose of 2-deoxy-d-glucose (2DG) over several months. 2DG I blogged about before, but to recap: 2DG is a modified form of glucose. It is taken up by cells like ordinary glucose, but can not be used for energy. In theory cells get clogged up with this stuff and die. The problem is that 2DG can also damage heart tissue and brain cells as both also use a lot glucose. My theory is that these cells can be protected by placing the body into ketosis.

Secondly I did a lot of research since and I believe that I now know the reason why my first attempt may have failed. Firstly I focused mostly on eliminating carbs and failed to control my protein intake. Excess protein is converted by the liver to glucose. This time round, I will limit my protein consumption to 50-60g per day (or about 1g per kilogram of body weight). This amount is needed for tissue repair and should be low enough to avoid its conversion to glucose. Secondly I failed to control my calorie intake. New research I came across says that for the ketogenic diet to be effective, it also needs to be calorie restricted. The reason is that the glycerol component of triglycerides contained in fat can also be converted to glucose.

The ketogenic diet still should have controlled my insulin spikes, thus retarding my cancer growth. It turns out that a mutation effecting the PI3K pathway means that my little mutants do not require insulin to stimulate growth. This is the reason I suspect why my cancer is so aggressive.

And the last piece of the puzzle is Glutamine. In the absence of glucose cancer cells can survive by fermenting Glutamine, which is the most common amino acid in blood serum. I plan to target glutamine with Phenylbutyrate. Phenylbutyrate binds to Glutamine, which is then expelled in urine.

Another possible issue is lactic acid. This can also be used for energy. Lactic acid is produced in hypoxic cancer cells. Not much that I can do about it (at least I have not found the right drug yet), but I am hoping that 2DG will shut down its production.

So my goal is limiting my energy intake to about 1200 calories per day. This is roughly a 40% reduction on my daily requirement of 2000 calories. This should address the caloric restriction part. The composition that I am aiming for is 100g of fat, 20g of carbohydrates and 50g protein. This should address my protein intake. Reducing carbs is relatively simple, limiting protein to 50g on the other hand is proving to be quite a challenge.

Note: The above figures were calculated based on my current weight of 57kg, 167cm height and BMI of about 20.

I started on the ketogenic diet 10 days ago. I have been fine tuning my food consumption ever since and I am keeping a very close eye on what I eat measuring everything, including the amount of dressing I put on salads. I also ordered a blood glucose and ketone meter and will test myself daily to make sure that my glucose and ketone levels are within the therapeutic range. (I just need to think of a creative way to draw blood as I hate needles as you know. Maybe my Avastin nose bleeds can finally come in handy).

While on the keto diet I will take 2DG, Phenylbutyrate, DCA and Galactose (more on galactose next time). All of these should mess with my cancer’s metabolism. Fingers crossed that this is the magic bullet that I have been searching for.

Resources

Ketogenic Diet : Food List
Keto Calculator

Posted in 2DG, Ketogenic Diet, My Journey, Treatments | 1 Comment

2DG Not as Sweet

Posted on July 27, 2013 by Ren

20130727-144631.jpgI did 2 weeks of 2-deoxy-d-glucose (2DG) infusions while at the Siebenhuner clinic in Frankfurt this month. I suspect that this may be one of the factors responsible for my recently slowed tumour growth. The problem was what to do while outside of the clinic. I ordered a kilogram from wxsigma, a chinese company, but because I want to do extensive lab tests on it, it will take several weeks before I am able to use it. The company may be reputable, but many in china are not and I can’t take the risk of consuming something that I do not know the composition of.

Dr. Siebenhuner came to the rescue and shipped 20 days worth from his pharmacist, to my hotel in Duderstadt. I received it today.

I was hoping that 2DG being very close to glucose, would be sweet and that I could just use it as a sugar substitute in my tea. I was dissapointed. Although it is moderately sweet, it is also quite bitter. (I am sure my little mutants will not like the taste either).

I started today on a 4g dose divided throughout the day. I will add phenylbutyrate next week.

Posted in 2DG, My Journey, Treatments | 2 Comments

Excercise

Posted on July 31, 2013 by Ren

20130731-230048.jpgWhen I first suffered from cachexia (rapid weight loss associated with muscle waisting) the most effective treatment that I found was excercise. Resistance training to be more specific. I consulted a physio, found a good personal trainer and hit the gym 3-5 times a week. It helped. It stopped the cachexia, and I eventually regained most of my lost weight. (Well not all of it, but I got back to my ideal weight of 65kg)

At that time I lost about 20% of my body weight within 6 weeks and at its peek, I was losing 1kg every 2-3 days. It did not matter how much I ate, I simply could not put weight on. Sadly most of the weight loss came from lean muscle mass. Hence the aggressive resistance training.

Last month I lost 4 kilograms within 2 weeks. Initially I assumed that it was due to extensive liver swelling which I suspected had compressed my stomach. I could not eat very much and felt nauseous all the time. Unfortunately when this was resolved and I regained my appetite, not only could I not put the weight back on, but it continued to drop. Later I went on a calorie restricted ketogenic diet, which did not help.

The biggest problem was that yet again, most of the weight loss came from lean muscle tissue, the same muscles that I worked so hard to regain few months back.

It was always my plan to continue training while in Germany, but the treatments and schedule always made this too hard. After a Vogl tace, I was usually in pain, and had problems walking for up to two weeks. This month its been three weeks now, and I still cant walk more than 20m without running out of energy in my right leg and needing to take a break. After each removab treatment, the docs insisted on absolutely no physical exertion, not even walking for 1-2 days afterwards. Then there is the travel between clinics and the long days spent hooked up to IV lines. Needless to say, I did very little exercise since I arrived for treatment in Germany 3 months ago.

In Duderstadt I finally decided that I simply had to hit the gym to try and stop my weight loss. That is exactly what I did. The first session was quite hard. Any upper body exercises resulted in severe pain from my port area. I knew that was a very bad sign. Although my infected port now looked quite good from the outside, almost healed in fact, I knew that pain was bad news. The Vogelitis (Injury to muscle or vein caused by prof. Vogl’s TACE treatment) in my right leg was also giving me grief. It was however ok as long as I gave my leg enough time to recover every few repetitions. And of course lots of pain in the liver, but I was used to that. During the first training session I realised just how weak I had become.

The next day I pushed through all the pain and upped both the intensity and duration of the training session. My port however took it personally and planned its own revenge. But more on that next time.

I am now back home in czech. I could not exercise the last 2 days as I was not feeling great and I had very little energy. I even had troubles standing up in the shower. It feels like hypoglycemia style symptoms. Either from the severe lack of carbohydrates in my diet, due to the 2dg I have been taking or a combination of both. Today I feel somewhat better, which may mean that my body switched to a ketone metabolism. I hope so anyway.

I got some weights and plan to do weight training at home. Just need to make sure that I find the motivation to use them daily and do so diligently. With no personal trainer to push me, I know that it will be much harder.

Posted in My Journey, Treatments | 3 Comments

2DG & Keto Diet

Posted on August 4, 2013 by Ren

20130804-153551.jpgJust a quick update. 2-deoxy-d-glucose in combination with the calorie restricted ketogenic diet is taking quite a toll. For the past week I have been feeling severe hypoglycemia style symptoms. I have virtually no energy to do anything. When I add the phoenix tears to this, well you can imagine the state that I have been in.

Still losing weight and reached my all time low of 54.9kg. Even though I do not want to do this, I’ll need to boost my daily protein and calorie consumption. I also need to find the energy to excercise more.

I have still not added phenylbutyrate or galactose to my regime, but plan to do so next week.

Posted in 2DG, Ketogenic Diet, My Journey, Treatments | 3 Comments

Glucose & Ketone Levels

Posted on August 7, 2013 by Ren

20130807-190637.jpgThree weeks ago I started on a calorie restricted ketogenic diet in a hope of controlling my cancer. A ketogenic diet derives most energy from fat, about 70%, 25% from protein and 5% or less from carbohydrates. Its aim is to starve cancer cells by restricting its primary food source: Glucose. This means eliminating virtually all carbohydrates from my diet.

For my body weight, my aim was to limit protein intake to 50g per day and reduce carbs to 12g or less, while keeping total calories 40% below my basal requirement. It was a good plan, but my current weight is starting to concern me, so I am now trying to up both my protein and calorie levels somewhat.

I received a blood glucose and ketone meter today, so was very curious firstly whether I was able to achieve ketosis, whether I had achieved therapeutic ketosis levels, and what my values are.

My fasting blood Glucose level was 4.7, and my Ketones 1.9 mmol/l – not a bad start.

My ketone levels are within the recommended therapeutic range, however my Glucose is still a little too high. My goal is to reduce glucose to below 4.0 and raise my ketones to above 2.0. Once I achieve this, I will focus on my Glutamine levels.

Progress

2013/08/07 – Glucose: 4.7, Ketones: 1.9
2013/08/10 – Glucose: 4.9, Ketones: 1.0

Resources

Glucose mg/dl to mmol/l Converter
Mercola Article on Ketogenic Diet
Critique of Calorie Restricted KD

Posted in Ketogenic Diet, My Journey, Treatments | 4 Comments