Thank you. I'm having a hard time today. I know every family goes through this, and now it's my turn.
John, I'm sorry to hear of the loss of your wife. My deepest sympathies to you (and family).
I'm having a hard time today.
Sorry to read this, Johnny. This is the hardest part. All you have read and studied for years during her illness did nothing to prepare you for this fight, unfortunately.
Do you have family, close friends or close relatives you can hang on with for the next several weeks?
We had no children together. Several of her family members are within an hour's drive, but her daughter and son, who are in their 60's, have been estranged from us since last year. I'm still friends with Shirley's ex, though he is ten years older. I'm 73, she had just turned 80. But she wasn't 80.
The Mexican family across the courtyard has adopted me, saying their house is my house. They moved here twenty years ago and we watched their three sons grow up. Only the boys speak English. It was the eldest son's birthday today, so I made a roast and fried peppers and onions and took it over, and we made tacos. I baked cookies for them yesterday.
I have a small electronics business in my home. I have a few pending orders, so it's time to get back at it. I make the J&S SafeGuard.
I'm still friends with Shirley's ex
I think there a few things that can help you cope with your grief. One is frequenting the people who know you well and care about you. Her ex might be such a person, especially if you guys have some common interests and he can participate in whatever it is, may be cooking, taking strolls, gardening, just chatting, or whatever.
I made a roast and fried peppers and onions and took it over, and we made tacos. I baked cookies for them yesterday.
Another thing is what you are instinctively doing. Doing things for others. You are a very nurturing person and your mind is missing a person to care for, which for a long time was Shirley. Helping others might alleviate the loss in this department of your spirit.
Besides helping your neighbors, you may want to look into volunteering for some organizations. You have tremendous talents that can be of a great help to any such an organization. I would choose one whose goals attract you. Many organizations are set up to be helped remotely online. It might be this forum, where you could help millions of people. You might want to ask Daniel if there are some type of activities he might need help with.
I have a small electronics business in my home. I have a few pending orders, so it's time to get back at it.
Yet another way of making the mourning less painful is keeping your mind as busy as possible. You will get some day to the point where thinking of Shirley will be a sweet thing rather than a painful one, as it now is. Until that day, not allowing the sadness part of your mind too much free time helps you heal sooner. It is like giving you arm or your leg a break after you injure it. You don't want to rub the wound or it never heals. Getting your business activities up to date can be therapeutic for you at this point.
By the way, the J&S SafeGuard sounds like a terrific idea. Did you invent it? Does it work with electronic ignition cars also?
Yes, J&S is John and Shirley. We started it in 1980, was part time for ten years while I was a tech at Hughes Aircraft, then went full time in 1989.
Here are a couple threads on an engine forum about it:
https://www.speed-talk.com/forum/viewtopic.php?f=1&t=36681&start=15
https://www.speed-talk.com/forum/viewtopic.php?p=466124#p466124
Demo of a new design I did last year: https://www.youtube.com/watch?v=5NjYMpQwaQ8
John, please accept our deepest condolences for your loss.
Kimster
J&S is John and Shirley.
Demo of a new design I did last year: https://www.youtube.com/watch?v=5NjYMpQwaQ8
Johnny, another way many people feel better in grieving times is by writing as much as possible. You can do it once a week or 20 times a day. It can be a short writing or a long one, by hand or by computer; but it is best if you write for at least 5 minute a day without stopping.
These are some possible topics to write about: it can be a love letter to the departed, a memory letter talking about past times, an update memo about the events after her passing; what are the best, most important things she has given to you in your life; things you wish you had said or not said to her; and so on.
It can also have a negative contents, such as a complaint letter about what you are going through; the regrets you have about the choice of doctors you made; the doubts you now have about the treatments she followed or did not follow; or the tiffs you guys had in the past; you name it.
I am copying the advise from some place: If you don’t feel inspired, write whatever comes to mind, be it sentences, single words, phrases, even doodles. Just keep on writing and don't judge what you are writing. It doesn't even have to make sense; feel free to keep going until that moment when you know you are done. Let your unconscious mind take it from there. It could turn out to be the best 5 minutes of your life.
I read your links. I am ignorant in this subject but it sounds like the J&S SafeGuard provides maximum engine performance for a minimum amount of fuel consumed. I assume that modern internal combustion engines for airplanes, boats and cars include something similar in order to increase their gas mileage, reduce air pollution and meet regulations, right?
Johnny, you are really talented in your field. You have a lot to offer to society and I think that following your calling could help you sooth your grief greatly. Long live J&S!
The SafeGuard listens for knock or "ping", then changes the timing to prevent engine damage. It was the first commercially available individual cylinder knock controller. It worked great, but we never hit the big time.
I have a new product in the works, called ion sensing knock detection. I've been at it on and off for six years, but haven't been able to spend much time on it since Shirley got sick. It's nearly ready for an engine test, had hoped she would be here to see it.
It's nearly ready for an engine test, had hoped she would be here to see it.
Go for it and don’t even think for one moment that she’s not going to see it. She’ll be right next to you when you plug it in. She wouldn’t miss it for anything! The only thing is, you won’t see her smiles or hear her cheers. That’s the price you pay for her not suffering anymore.
But she’ll be as proud of you as when you tested your first Safeguard!
She was there, encouraging me every step of the way. For vehicle tests, she would drive, while I had a lap full of test equipment.
She used to tell me my product ideas were little presents God has waiting for me, saying Ok, John, time for another one, and he would hand it down.
When I finished the Interceptor design, I built the first article, then let it sit for a year, out of fear it wouldn't work. Eventually, I got up the courage to program and test it, and it worked perfectly. When I told her, she gave me a quote from Joyce Meyers, saying next time "Do it afraid" (feel the fear and do it anyway).
She was there, encouraging me every step of the way. For vehicle tests, she would drive, while I had a lap full of test equipment.
She has finished her job of teaching you to have the drive and enthusiasm necessary for you to progress in your projects. Now it is time for you to show her that you learned her lessons and that you have the drive she wanted you to have. Tell yourself what she would tell you every time you start working and you will continue to make progress.
She used to tell me my product ideas were little presents God has waiting for me, saying Ok, John, time for another one, and he would hand it down.
This is such a nice thought. May be she too will give you extra presents now...She knows what you need!
she gave me a quote from Joyce Meyers, saying next time "Do it afraid" (feel the fear and do it anyway).
I never heard this quote but it is so good I am adopting it for my own use. This is a gift Shirley gave you that now keeps on giving to others like me. Thanks, Shirley!
Thank you very much for your uplifting words. I wish I could send her the link to your replies. 🙂
I wish I could send her the link to your replies
You're welcome. Actually, she might not need links anymore. If you think, as many people do, that her spirit survives her body's death, then she might be able to read them directly on your mind, because unlike before, she would not be limited by the laws of physics; she would now be in a higher dimension than us.
@jpizzuto Dear John,
I am so sorry to hear about the passing of your dear wife. I so much understand what you are going through, and I am so sorry for you having to go through this.
What helped me a lot of going through these moments is to realize that life on this planet is just a small step from everything that is, and to know that regardless how much we still have left on this planet, one day or 100 years, time goes so fast, and we will soon meet our loved ones again. Until that moment, while it is so difficult to go forward without them, we need to go forward and do the best we can with the time we have left for life around us. I hope this helps you a little too.
We are on this planet for evolution, through love. There are important events in our lives when we choose how to react to them, fulfilling the purpose of evolution, or not. The way how you choose to react when your dear wife needed your help is so rare. You took so much care of her and took so much responsibility on your shoulders searching for possible solutions. It is so much easy to say "there is nothing that can be done" (a route chosen by most people) and so difficult to take the driving seat and carefully move forward into unknown territories searching for solution. I am sure your dear wife loves you so much from where she is now and appreciates so much what you did for her.
As GgE well said, she is now in a place that is not limited by the laws perceived by our consciousness. So don't try to understand that - just know she is and will be with you.
Please take care of you John and keep your mind busy as much as you can. Please accept my deepest condolences!
A big hug,
Daniel
Thank you Daniel, for the big hug. I needed that.
My Mom just arrived in Yuma for the winter. I'm leaving tomorrow to spend a few days with her. It's about a five hour drive. She's 93 now. Dad's been gone seven years. I know that was hard on her. I'm sure she will have some advice for me.
@jpizzuto I am very sorry to hear about the passing of your dear wife. Your work as a caregiver has been admirable! This shows that you are a beautiful person. As Daniel says, I believe that one day we will all understand the meaning and meet our loved ones. A hug
Dear forum,
I am new to this forum as from today.
My daughter (11yo, 35kg) was diagnosted with DIPG over a year ago, sadly despite irradiation her tumor is progressing. In my search for possible treatments I stumbled on this combo (met+syro).
What dosage/schedule would be a suitable dosage considering her weight?
Suggestions for other treatments are also welcome of course.
One of our goals is trying to starve this cancer.
Many thanks in advance,
John
Hi JohnTT, sorry to hear about your daughter's illness.
The main challenge is always to get drugs to the brain and also that they do not produce neurotoxicity.
You can ask for the new drug ONC201 (found in several trials and an expanded access program for H3 K27M and DIPG mutant gliomas), it is a dopamine D2 receptor (DRD2) antagonist.
Chlorpromazine is a repurposing drug that seems to have efficacy acting similar to ONC201, here is a study on glioblastoma >>>>> https://pubmed.ncbi.nlm.nih.gov/32005270/
Kind regards
Dear @johntt,
I am sorry to hear about these challenges. The dose and schedule has been discussed previously in this formul. Whne it comes to using drugs for children there is a formula that can be considered. I discussed that here https://www.cancertreatmentsresearch.com/tips-on-treatments-a-list-to-be-constantly-updated/
For DIPG, PhenylButyrate is very relevant - you may want to look into that.
If you have specific questions please let me know.
Kind regards,
Daniel
I read your post of 23/08 and I am very interested in your experiences because we are in a similar situation (DIPG).
Our daughter is also on Onc201 and progressing, so we are looking for alternatives suchs as Syromet.
Question:
Did you try everything separately or did you for example try the combo Onc201 - Syromet or any other combination?
Where do you buy Phenylbutyrate and what is the dosage and side-effects?
Do you use any supplements such as CBD, curcumine?
Many thanks!
John
Hi Manuone, thanks for your reply.
I realize now that I should have been more extensive in my original mail.
She has the H3K27M mutation and her tumor is progressing while on Onc201 medication.
We are also giving her the following supplements:
-Full spectrum Curcumin
-Boswelllia Resin Extract
-Vitamin D3
-Maitake Mushrooms
-CBD/CBG/THC
-TBL-12 Seacare.
Looking at long time survivors the one thing they have similar is that they are taking an arsenal of medication and supplements, so we are looking to add something to the above list.
Syromet, Chlorpromazine and Phenylbutyrate all look very interesting.
One of the main problems that we have is that we don't know how these might interact with her existing combo!
Regards,
John
My son died recently so I am no longer so invested in this research.
However from our experience: ONC201 works fine for 3 months maybe at most 6 months. We contacted other parents (2 so maybe not that statistically relevant) with the same issue and their experience was similarit works fine in the beginning, but not so much later on. Even the initial effect was not spectacular.
We started with ONC alone for roughly 6 months, then 3 months in combination with syromet. Then we gave up on ONC but kept the syromet and added others.
We bought Phenylbutyrate from canchema (look them up online). Since he was in very bad shape by the time of Phenylbutyrate start (tetraplegic, fed through gastrostoma and so on) we don't know the side effects it had. Phenylbutyrate can be given to children but for other rare diseases-we used the dosage from there.
Syro has a known antihypertensive effect but it is fairly slow in action compared to similar drugs.
We didn't use CBD or curcumine.
So sorry to hear that.
It's good to know that the onc-syromet combo is safe to try.
Is this the product you are referring to, powder form?
Many thanks!
John
yep
I took some time to go through 33 pages of medical info, but I think I figured it out.
For her bodyweight the max. Metformine is about 750mg (35/70*1.5), than I need to decide which ratio to apply (I am thinking 1/200) to calculate the Syro.
Do you thing that Phenylbutyrate is a better option than Syromet?
Our primary objectives were Onc206 or CED MX110 but due to Covid these were cancelled until further notice.
Any thoughts on those options?
Regards,
John
@adifer Hi Adi, I am so sorry to hear that ... please accept my deepest condolences.
A big hug,
Daniel
Dear @johntt,
I would give priority to Phenylbutyrate vs Syromet. But please make sure that what you buy is the real drug. canchema sells one version and adi used that while he saw some good shrinkage of the tumor on 2 out of 3 axes. However, even that source I would make sure I would test for purity as long as it is not a pharma company. Purity tests cost about 500 euro (600USD) at a laboratory.
Beyond this, you will find many relevant treatment options in the Blog section of this website. One that is easy to implement in parallel and may offer extra chances is Silver solution https://www.cancertreatmentsresearch.com/a-silver-bullet-to-kill-cancer/
What is the Curcumin you are using and what is the amount/day?
Kind regards,
Daniel
The overall volume shrinkage of the tumor was somewhere around 50% after phenylbutyrate was added to the mix (2-axis improvement as Daniel said). With visible functional improvement.
We stopped phenylbutyrate though when he developed hydrocephalus. The already implanted shunt just got clogged (apparently, according to the surgeon it is pretty common in these kind of gliomas) and his digestion just stopped working, so there was no way to give him the drug and we fed him during that time through IV.
After a 6-week treatment pause, his condition was very very bad and there were just very small improvements after that.
The reason behind the 6 week was that initially the distal end of the shunt got clogged (actually cyst inside the abdomen), then the valve, then the proximal end and in the end a new shunt was inserted which worked just fine (covid was pretty bad at the time so they didn't go for a new shunt right away). In the meantime the tumor grew and there was also large damage from the high pressure for a long time.
The taste/odor of the powder is pretty bad. There are two drugs (buphenyl is one of them I think, google the other) that contain the powder and apparently those taste much better but of course they are more expensive. Since my son was already fed through a tube, taste did not matter at all. The powder is easily soluble in water and we just made a solution for the whole day and split it evenly in 4 doses (once every 6h). As urea cycle disorder drug it needs to be taken with the meals so there is no ammonia build-up, but there is no such limitation for the current case. The powder is apparently not very nice to the stomach (slightly elevated pulse and red cheeks) when given while he was sleeping so we decided to add also some food during the night dose and that seemed to work fine.
