Danny - son with Pontine glioma - need some advice

[johncal2004]

Hi all,
Our son Danny was diagnosed with pontine glioma last September (turn in his eye brought us from an ophthalmologist to a CT to an MRI scan in a matter of days, with a big shock when we were told that this was an inoperable tumor because of the location and outside of radiotherapy there is nothing that can be done). after initial panic, a round of radiotherapy and an MRI scan that showed a significant reduction in the size of the tumor, we are now on the protocel journey...

Danny has been taking protocel for about 5 weeks now. We have just moved up to the 1/4 spoon 5 times a week (protocel 23). Now, here's my question:
from reading "outsmart your cancer" it appears that 23 is the right formulation for brain tumors, although depending on how I read things we may need to move him to protocel 50. Could anyone out there please advise on which formula is best for Danny, I'll need to order the next batch this week and I don’t want to get the wrong one, mainly because I don't want to delay the transition, if I need to make one.

would really appreciate a response to this one ASAP.
Thanks,
John

[ChrisPe]

Hello John,

Why do you feel it might be necessary to switch to formula 50? Formula 23 is the one recommended for all brain tumors other than Glioblastoma. Is Pontine Glioma a form of Glioblastoma?

You may want to contact Elonna directly if time is of the essence. Calling her would be fastest, but I see that you are in Ireland and I'm not sure of the time difference and so on.

Just out of curiosity, is Danny on any type of steroid medicine? It may not be necessary but sometimes it is when dealing with cancer in the brain because the lysing process may cause pressure.

In any case, I don't think any of "us" other than Elonna can answer your question, so I wanted to be sure to steer you in the right direction.

Good Luck
Chris

[ann td]

God bless you, John, and Danny! I'm so glad you found out about Protocel and have already begun. I'm sure Elonna will be a great help. Please know I'm praying for healing and strength for Danny and for all of you. Cancer impacts the entire family as it did ours when our son was diagnosed with neuroblastoma at 6 mos. of age. He is now 24, but the journey was especially tough on my husband. We had no idea about Protocel back in the 80's!!

[Elonna]

John,

Welcome to The Corner. Thank you for posting some of Danny's situation. It would be great if you could put a more detailed post up under this thread. Then continue to post anything relevant to his Protocel journey here.

In answer to your question, I have copied over my suggestion to you from one of our private emails:

You only want to keep him on #23 for a period of 4 - 6 weeks. You will then need to switch him over to #50 as this is what is needed with aggressive tumors. You would start him out on 1/8 tsp initially with both formulas however you need to work him up to the 1/4 tsp as soon as possible. You do this with #50 by doing 3-4 weeks at 1/8th, then 3-4 weeks at between 1/8 and 1/4 tsp, and then you move him up to the 1/4 from there. With the #23, you do 3 weeks at 1/8 and then move him right up to 1/4 tsp.

Unfortunately, as you already know, pontine gliomas are extremely aggressive. It is my opinion that Protocel #50 needs to be used on all aggressive cancers, and most particularly on all brain tumors. Additionally, in my following for a number of years a very large group of children taking Protocel, I formed the opinion early on that Protocel #23 would get them stable, keep them stable for a brief period of time, but never seemed to be able to actually get ahead of the disease and the children who stayed on #23 would then begin to slide backward. When switched to #50, they would begin to progress positively again towards healing. Unfortunately, we lost a good number of these children because of prior medical treatment performed, and/or the fact that many of them were doing conventional methods mixed with Protocel.

As far as the suggestions found in Outsmart Your Cancer, please know that I feel that Tanya did an excellent job in writing her chapters on Protocel. However, just because she wrote a book based on information she was provided with this does not give her any special insight into the working of Protocel or make her in anyway an expert on Protocel. It shows that she is a good writer/author who is able to intelligently explain what she is writing yet present it in a manner in which anyone can understand. Additionally, I do not agree with some of what has been suggested within her chapters giving advise about Protocel. I guess it is going to boil down to who you want to believe is giving the best advise to you. While I don't have a book published as yet, I do have 21 years of experience with this product and have personally used it to cure my cancer. While Tanya during her research has talked with many people, she has only know of Protocel for approximately 6 or 7 years.

In Danny situation, I will stand by my suggestions given to you above.

[Rebeccawomack]

John,

Welcome to the forum. I am sorry that you are here under these circumstances. However, I am so glad that you found us! There is a community of people eager to provide you with support and encouragement.

Although I have no children of my own, I can only imagine how difficult it must be to care for your own child in this situation. I am so very thankful that you have chosen Protocel for him. I have heard of/read about so many children who have patiently endured the effects of radiation and chemo. Unfortunately, in what I have read, it has not been effective. I know I would choose this for my own child if I was in that situation.

Cancer is exhausting and can be discouraging. I hope and pray you are able to carve out moments of peace and joy in your day. Take a break from the cancer.

I will be praying for Danny's total and complete healing.

In Him,
Rebecca

[johncal2004]

Thanks to you all for your kind thoughts, prayers and advice. I think we'll move to 50 based on the recommendation above.
I'll keep you all posted on progress.
Thanks again,
John

[mloughran]

Just out of curiosity, is Danny on any type of steroid medicine? It may not be necessary but sometimes it is when dealing with cancer in the brain because the lysing process may cause pressure.

Hi Chris,
No, Danny is not on any type of steroid medicine as yet. Good to know this, I'll keep an eye on this and discuss with the doctors to make sure this doesn't become an issue. Should I assume that the pressure would manifest itself in the form of headaches?
Thanks,
John

[ChrisPe]

Hi John,

Yes, headaches, especially if they are daily headaches would be something you might want to check out. There are other indicators also, depending on where the tumor is and what it may press against.

You may have noticed in my signature that I have a benign tumor sitting on my pituitary with pressure on my optic nerve and aorta. I had lost 50% of my vision before anyone thought to have an MRI done on me! (My vision is back to normal, so don't be concerned). I haven't had an MRI in a year and a half and I'm not having any brain tumor related problems. Benign tumors apparently break down slower than malignant ones, but I'm counting on Protocel to eventually rid me of mine (unless it's gone already?!?)

So, anything way out of the ordinary like headaches, impaired vision or speech, vertigo and so on, would be something you may want to have checked. I don't want to frighten you because it may never become an issue and besides, the steroids would handle that until the dead cells are lysed out. I'll be honest with you and tell you that that just about exhausts my knowledge on brain tumors and Protocel, so if you have any concerns or questions beyond that, Elonna, of course, is the one to ask.

Chris

[Elonna]

John,

If you guys will make sure that Danny's drinks a sufficient amount of water there should not be any build of anything in the brain that would be caused by the lysing process using Protocel, especially in light of the fact that you started him out on #23. The brain needs water just as much as the body. Keep his water intake up.

However, steroids are often used by individuals with brain tumors because the tumor itself will keep the brain "inflamed" as it is not supposed to be there. As the tumor grows, pressure can build. Deficiencies begin to show up, more than just headaches. Not everyone with a brain tumor or pressure in the brain will have headaches. You need to be watchful over his motor function, eye sight, balance when walking/standing; things such as this. Steroids are sometimes a necessary "evil" as they will reduce inflammation and/or any edema in the brain (or other parts of the body). When used, they should be used sparingly because of what they can do to the rest of the body and the withdrawal symptoms are horrible to deal with. The weaning off time can be extensive depending upon the dosage of the steroids used.

Additionally many brain individuals are on some sort of anti-seizure medication to keep the possibility of seizure activity down. However, physicians generally only prescribe this based upon tumor location and the likelihood of seizure activity.

When on Protocel, especially initially, and dealing with the brain individuals will sometimes experience a return of symptoms similar to those in which they had immediately prior to being diagnosed with the tumor. However, these "recurrences of symptoms" are never as intense as they were prior to diagnoses, just similar to those experienced then. These have come to be known as "Funks". These are short periods of time where there are neurological deficits such as a non-stop headache for several days, imbalance, consistent dropping of items without explanation, inability to get thoughts out of the brain; things like this. These Funks have been report to last anywhere from several hours to up to about 10 days. Generally though the average is 1-3 days. Then the individual returns to baseline or often is much stronger. These Funks happen as the nerves are healing in the brain. The brain is a large electrical appliance really. The tumor breaks connections between the electricity of the nerve cells there. As the tumor is leaving and the nerve endings are touching back together, there is "sparking" that occurs until the nerve(s) settles back down. This is what causes the Funk periods.

Let me know if you are still wondering about anything and, of course, keep us updated on Danny's condition/progress.

[johncal2004]

thanks again to you both for you consdered responses to my queries. I do have a question, that you might consider to be slightly off topic but related. We're having problems getting Danny to take the supplements (he basically doesn't like the taste/texture. Any thought on how best to disguise these without impacting their effectiveness.
Thanks again folks.