Thursday, 1 September 2016

CUSP9 without being in a trial

I have asked my daughters NO to prescribe the drugs used in the CUSP9 'Concept of Treatment Trial', he has agreed to try to get them prescribed  minus the Auranofin.

He has agreed this as they can't offer anything else. Her recurrence is diffuse in cerebellum, extends to the brain stem and shows small area of enhancement round original site of left temporal lobe.
 He said Gamma knife not an option, no trials available and she is not fit to fly for magnetic or any other therapy due to lack of mobility, tiredness etc.

At present I am trying to get health insurance co to pay for Avastin, which they are saying isn't licenced in UK.

My concern is,  that apart from twice weekly blood tests I am going to have to try to oversee her treatment with these drugs and I'm very nervous. But there doesn't seem to be an alternative.

NO has said to stop Valproic Acid, presumably because of interaction.

Any thoughts gratefully received.

32 comments:

  1. Since we too have the same mutation and are also trying out pieces of the CUSP9, drop me a line and I'll tell you of our experiences with it plus POH. Logan607 at gmail.

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    1. logan

      What dose of POH are you using? Are you diluting to a neutral pH and placing in a nebulizer? Any other specifics would be welcome. Thank you

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    2. It's a bit hard to say since it's in a spray but assuming that she's getting the full amount, it's 275mg total for the day.

      We are diluting to neutal pH (about 3.5ml of water) and placing in a nebulizer; we jerry-rigged the Philips Comfort gel mask to an Omron nebulizer. It runs anywhere from 16 to 20 minutes, depending on how deeply she inhales and such.

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    3. 275 mg daily total. How many times are you administering POH daily? One 275 mg dose, or?

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    4. Four times a day so it would be 275/4 for each dose. The worry is that she's getting less because of the nebulizer mist escaping into the air.

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    5. Dear Logan,
      Would you mind telling from where you got POH?You made on your own..could you let me the details like formula etc...Thanks..

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    6. Our supplier just let us know that they are no longer carrying it; not really sure why. But we are trying to find a supplier that can make it based on this write-up:

      http://www.cancertreatmentsresearch.com/?p=602

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    7. Thanks Logan..Would you mind giving the formula you use to prepare intrnasal POH.We are trying to procure 96% PA from sigma.So I am lloking for the formula to make it intransal admn.Thanks.

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    8. Hi Logan and Jai,

      About a year ago I spoke with Dr. Raymond Chang of Meridian Medical in NYC. He said that his lab makes POH and that he would prescribe it. He is very expensive - $875/hour and he doesn't take insurance. My understanding was that you do not have to go to his office for an appointment. You can do Skype or phone call.

      Mike B

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    9. I should have also mentioned that Dr. Chang was in the movie, Surviving Terminal Cancer.

      Mike B

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    10. The formulation is in the link you see above; 23 drops of POH to 3ml of water in a nebulizer.

      Mike B, thanks! We actually planned on calling him but right now, cost is a major issue for us. We may have to rely on Optune alone for a while.

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  2. My 14 year old daughter's recurrence was also diffuse but in the occipital lobe. The doctors had nothing left to offer (we had done AdV-tk clinical trial, Avastin, and standard of care). I asked them for a metronomic dose of chemo and I sought out an alternative treatment: IV Vitamin C. She receives high doses of vitamin C 3 times per week. In addition to that, she eats a raw vegan diet and gets cololics 2-3 times per week. Her last 3 MRIs have been stable. In the folds of her brain where the tumor literally filled empty space, there is now a little bit of definition. The doctors are telling me to keep doing what we're doing and not to change a thing.

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    1. Hi CaL,
      May I ask what doses of vitamin C she has now? No problems with ionogram or edema? Thank you.

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    2. She is at 100 grams right now. A word of caution: you have to start out at a lower dose and don't try to up the dose too fast. The way high dose vitamin C works is that it creates a pro-oxidant environment causing cancer cells to swell until they pop...so, yes, there is some edema associated with IV Vitamin C. Thankfully, not all the cancer cells swell at the same time. In all honesty, I wish we did this right after her resection when her tumor load was smallest.

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  3. Hello Chosen and Loved,

    How long your daughter has been diagnosed with GBM. Where did she get the treatment. Can you send me your vegan diet? Thanks

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  4. Diagnosis GBM IV on left temporal lobe on 4/8/2015; recurrence diffused GBM left occipital lobe seen on MRI 1/20/2016. Her traditional treatment is at Dana Farber Cancer Institute in Boston; IVC treatment is at The Rothfeld Center in Waltham; colonics at Body Balancing Center in Worcester (not far from our home). She literally eats raw fruits, veggies, seeds, and beans. She tends to eat a lot of veggies and hummus. I make her a fruit smoothie (banana, avacado, usually some kind of berry, kale) everyday.

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    1. Your daughters GBM started in the same place as my daughters. She too was diagnosed around the same time 14/8/15. She has had recurrence symptoms since April 16, but nothing showed on MRI till July. They said it was radiotherapy damage at first, now that its recurrence which can be seen on MRI.
      I'm trying to find somewhere that does IV Vit C to try.
      She isn't keen on changing her diet as she loves food and finds that's the only thing she can enjoy at the moment. We eat organic or grass fed, try to cut out sugar and processed food, but think this isn't enough. How did you persuade your daughter to follow this diet?

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    2. It looks like we are just a few months apart on this journey (I wrote the date in US form...her diagnosis was April 8, 2015). If you are able to find a place that does IVC, make sure they follow the Kansas University Medical Center's protocols. They have done clinical trials on IVC in different cancer lines.

      When KK was diagnosed, we were counseled that cancer feeds on sugar (cancer cells have more glucose receptors than normal cells). So, KK had already cut out refined sugar. She did not cut out all processed foods, dairy and cooked foods until the recurrence. I asked her how I convinced her and she said, "I just trusted you." She was 100% raw for 6 months. I just started letting her have cooked veggies (veggie soup, vegan chili,...) once in a while -- she is still 90+% raw. The reason for eating raw is so that she gets the most nutrient-rich food that her body can process.

      By the way, the glucose receptors in cancer cells is the mechanism that makes IVC work. The cancer cells read the IVC as glucose and feeds on it. You don't want processed food (that metabolizes into sugar) and refined sugars to slow down the uptake of IVC.

      Another word of warning, if you start IVC and it is working, my understanding is that you don't want to stop it until the cancer is gone, then you will want to wean off it over the course of a year or the cancer could come back with a vengeance. If we get to that point, I am thinking I will have KK do a treatment every month or at least every other month for the rest of her life (or at least as long as she will do it).

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    3. In spring we started IVC. But only reached 15g and had to stop. He had low glucose and low pottasium. Maybe due to taking diurectics and dexamethasone that time. Does your daughter take dexamethasone? How much? I studied about IVC (Riordan protocol) and swelling is contraindication.

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    4. Did they do a G6PD test first? It does cause temporary hypoglycemia while being administered, so you have to eat well beforehand.

      My daughter requested to wean off dexamethasone while she was still receiving radiation...she told the doctors she would rather throw up (her symptom of edema) than take steroids, but will take them if they are absolutely necessary.

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  5. Maybe we ought to have a new post for iv vitamin C discussion.

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    1. Yes, Stephen, definitely. Is it possible for you to split and move the discussion into new one?

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  6. I haven't been able to get IV but C for my daughter as after much searching I finally found somewhere in London,but my daughter isn't fit to travel there. I really wish I could think of something to try. She can't swallow very much and is bedridden but I feel there must be something I can try.

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  7. We have bought vitamin C from online Apotheke from Germany and were giving it to my husband at home (however only 15grams). But best is to find some doctor that would supervise it. Ionogram must be checked regularly, glucose level for example.

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  8. In my research on IVC I have talked with several physians involved with IVC and had hoped data from a clinical trial that ended last year would become available, but the results have not been disclosed. I emailed Jeannie Drisko, MD, who is the head of KU Integrative Medicine Department, and a proponent of IVC and this was her response about IVC and GBM's. "The evidence for IV C in GBM is anecdotal at this point in regards to humans. It does seem to be helpful when combined with ketogenic diet, HBOT, and conventional therapies. Animal data and cell tissue data are supportive."
    Jeanne

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    1. Thanks Michael for sharing the email correspondence that you had with Dr. Drisko- definitely interesting.

      Best,
      Mike B.

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    2. Chosen and Loved,
      I have at last found someone to administer High Dose Vitamin C at home!
      However after briefly reading the Riordan Protocol I noticed that you are only supposed to have this if your mobile.
      Can I ask if you know the reason for this? Also,can I ask how much KK's Vitamin increased each time when she was building up her dose?
      Could I also ask if Cololics is some kind of detox?

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    3. Also, could I ask why KK's alternative to TMZ is Cyclophosphamide as opposed to any other chemo?
      Only my daughter dosen't seem to be responding to TMZ either.

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    4. I do not know the reasoning behind being mobile.

      They should do a G6PD test to be sure she does not have a deficiency because blood sugar can drop during the infusion.

      Dosing should start at 15g ascorbic acid in 250ml sterile water over 30 minutes. You may want to increase the dosage thinking you want to get rid of this tumor, but do not increase too fast. IVC causes tumor cells to swell until they "pop" or die off (apoptosis). Make sure she can tolerate this dosage for a few weeks.

      The next dose is 25g ascorbic acid and 1ml of magnesium chloride in 500ml sterile water given over 60 minutes. Again, don't be too quick to increase to the next level...when you think she is ready, let me know and I can give you the next level.

      Yes, colonics are for detoxing. Our body only has a few ways for toxins to exit and the major way is through our liver and colon. If you are backed up the toxins "recirculate". KK also takes Epsom salt baths to help with this.

      The doctors determined that TMZ and Avastin weren't working for KK when the MRI showed recurrence. When I told the oncology team that I wanted to do IVC, I asked them for a metronomic dose of chemotherapy. Their answer was to give a 5-drug combo that is used to slow progression of disease (with a warning that it was not a cure). The combo included 2 chemos that alternated every 3 weeks, Celebrex, Fenofibrate, and Thalidomide. I chose to use Cyclophosphamide and not the other chemo for quality of life (the other chemo's side effects include hair loss). After a few weeks, I told the team I was not comfortable with the other 3 drugs, especially Thalidomide, so we took her off of them.

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  9. I'm searching an oncologyst that can prescribe Ben Williams cocktail or cusp9. We live in Italy and if is it possible we need that oncologyst in Europe...

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    1. Have you reached out to Marc-Eric Halatsch in Ulm, Germany, co-author of CUSP9 and the lead investigator for the CUSP9 trial in Germany?

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