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Rupert Atkinson 03-21-2016 11:10 PM

UFC 2.0 Ultimate Fighting Cancer
 
OK ... I have decided to tap into the collective wisdom of the people here. My son (16) was recently diagnosed (9th March) with Stage 4 Alveolar RhabdoMyoSarcoma in his pelvic/hip region. It is very rare and grows relatively silently. His docs misdiagnosed it's symptoms as growing pains. He has grown very fast of late and may indeed have had growing pains too. But he had X-Rays and blood tests too ... but let's not dwell.

Now I know very little about cancer so it has been a very fast learning curve. He will most likely not survive but I want to give him the best chance. The doctor keeps stating his protocol is to do this and that - chemo - an he appears 'bound' by it. Looks to me like the doc has no choice but to follow his protocol. But his protocol leads to death. Basically give him chemo until his body can take no more. Then, give up. The cancer is too big (15cm), cannot be cut out, and the chemo will not shrink it enough etc. Doc said he has never known (personally) a patient with this survive. He was diagnosed so late that some chemo is essential - doc said without it he would be dead already. He has just finished his first week of chemo and shows signs of improvement as I guess it holds back the cancer growth somewhat.

My idea is to take him off of chemo at some point. But I have no idea at what point would give him the best fighting advantage. Like, at least, before it wipes out his immune system. Like, one more week of chemo then quit and let his body fight to survive on good nutrition. Or two more weeks? Or what? He has another MRI scan on Thurs to determine cancer development. Has anyone been here before? I just want to give him the best fighting chance. The only person who hasn't cried yet is my son.

I have heard good things about vitamin C, bicarbonate of soda, etc., but doubt they would be so effective as some claim. Still .. I guess that he could do with any and every boost to his immune system that can be mustered.

Any advice / ideas appreciated.

Janet Rosen 03-22-2016 01:07 AM

Re: UFC 2.0 Ultimate Fighting Cancer
 
Rupert, I'm terribly sorry to read this. Words fail....
But my health care mind doesn't...
As an experienced RN who is very open to alternative therapies I have to say that vit C, sodium bicarb, etc are NOT effective in any cancer. Period. Really and truly there are no valid scientific studies and the entire supposition that you can alter the acid/alkali balance in the body is absurdly against everything we know which is that the body's pH MUST stay in a very narrow range for us to be alive.
What I would MOST want to know is, do you have access to a recognized Center of Excellence for this specific disease? Are you in a position to travel for the best possible specialized care?
I'm searching for links.

Janet Rosen 03-22-2016 01:10 AM

Re: UFC 2.0 Ultimate Fighting Cancer
 
I would recommend you read through this....
http://www.cancer.gov/types/soft-tis...-treatment-pdq

Janet Rosen 03-22-2016 01:12 AM

Re: UFC 2.0 Ultimate Fighting Cancer
 
Esp if the tumor is shrinking, there may be options for radiation therapy (yes, in anybody and esp one so young, there is a high risk it will lead to other malignancies later on), stem cell therapies, and a variety of clinical trials but you might well have to pick up and travel to deal with a doctor who is not "bound by a protocol" at his or her institution or by his or her own training.

Janet Rosen 03-22-2016 01:15 AM

Re: UFC 2.0 Ultimate Fighting Cancer
 
In fact what I'm seeing for pelvis on our Natl Cancer Institute is
"For tumors of the pelvis: Surgery (wide local excision) may be done. If the tumor is large, chemotherapy, and sometimes radiation therapy, is given to shrink the tumor before surgery. Some pelvic tumors may be treated with biopsy, rather than wide local excision, followed by radiation therapy."
I think you need another opinion while continuing the chemo

Janet Rosen 03-22-2016 01:23 AM

Re: UFC 2.0 Ultimate Fighting Cancer
 
Here in USA there are two sites for pediatric community clinical trials:
http://ncorp.cancer.gov/
One is Nemours http://www.nemours.org/service/medic...-research.html
Having trouble finding the other

Peter Goldsbury 03-22-2016 04:05 AM

Re: UFC 2.0 Ultimate Fighting Cancer
 
Hello Rupert,

There are two people who were friends of mine and who in 1986 were diagnosed with cancer. One was a doctor, a specialist in diseases of the colon who was diagnosed with the disease in the very area of his expertise. He had operation after operation and died a hollow worn-out shell. The other was Minoru Kanetsuka, the shihan who looks after the BAF in England, who is still going strong. In 1986 I went with M Fujita to see him in Oxford and he weighed about 45 kilos. He was preparing for chemotherapy the following day and no one who saw him then thought he would survive. He somehow shrank the tumor in his throat and all he has now is an annual check-up. It might be too much to travel to the UK to see him, but you could certainly talk to him. PM me.

Peter G

dps 03-22-2016 04:39 AM

Re: UFC 2.0 Ultimate Fighting Cancer
 
We live longer and healthier lives than any other time in our history because of our modern medical science.
My mom is a cancer survivor because she did what her doctor said and did the
chemotherapy despite contrary advise of well meaning relatives.
I would suggest getting another doctors opinion if you have any doubts but please listen to the doctors.

My prayers for your son.

dps

lbb 03-22-2016 08:25 AM

Re: UFC 2.0 Ultimate Fighting Cancer
 
Wow, Rupert, I'm so sorry. I really am.

I concur with Janet, who knows much more about this than I do from a medical perspective, and David. My perspective is as someone who knows a number of people who have had cancer. Some survived and some did not...some survived against considerable odds. Thinking on it, I would say that those who survived did the following things:
  • They found the best medical team they could get, and followed their doctors' advice scrupulously. I believe that medical science IS the best, strongest weapon that anyone has to fight cancer. It does not save everyone, but that doesn't mean it isn't the single best tool available.
  • They had good support networks and used them. No matter what the outcome, this is critical, for the wellbeing of the patient and the family.
  • They used various supportive and complementary practices, while avoiding quackery. For example, they all paid a lot of attention to nutrition, some used medical marijuana, some practiced meditation, etc. They avoided purported "cures" that came from outside the scientific community and that were supported only by anecdotal evidence.

To expand on a couple of these: "best medical team" includes not only competence and experience in treating the specific cancer, but also ethics. A good practitioner cares for the whole patient, oversees and manages the patient's care (including for related problems that require other specialists), and presents options honestly, candidly and with full information. A good practitioner is compassionate.

And, support networks: a good friend who survived cervical cancer said to me, "You know what I really wanted? I wanted someone to say, 'I'm coming over to do your laundry,' or 'Can I take your kids with mine to the movies?'" Your son's situation is a little different than that of a mother with cancer, but I think support means the same thing. What you need is friends who will help you, as a family, with the necessities of daily living so that you can focus on care and treatment. Maybe that's doing your laundry. Maybe that's bringing by a ready-to-cook meal and leaving it in your fridge so you can heat it up when you come back late from a day at the hospital. Maybe you need a friend who has a spare bedroom or a couch you can sleep on while your son gets treatment in another city. Whatever it is, reach out to your friends and ask. Chances are they're aghast right now, and wondering how they can help. And aside from the practical help, it's so important not to become isolated, as tends to happen when you've been hit with an overwhelming event. Reach out to your network, whatever that is -- work, school, neighbors, friends, dojo, religious affiliation, sports teams, whatever you have.

I am of two minds about "support groups", particularly the internet variety. As someone who lives with a pretty serious and permanent medical condition, I find them to be all too full of people that I call "recreational awfulizers": people who invest so much energy into being a "person with x" that it's somewhat taken over their lives and their identity, to the point where they're feeding it rather than fighting it. Judgy as all get-out, I know -- this is purely my emotional reaction, and I own that. I believe that real-life "support groups" can be helpful in terms of practical advice and perspective, and of avoiding isolation. Also, don't hesitate to take advantage of whatever resources are available through your caregiver -- they will know about organizations and resources that can help you.

Again, Rupert, I am so sorry for this misfortune. I know you've taken in a lot of bad news all at once. I hope for your son's wellbeing, and for yours too.

Rupert Atkinson 03-22-2016 11:38 PM

Re: UFC 2.0 Ultimate Fighting Cancer
 
Thanks for the info so far. it is all appreciated.
My son is currently in Strarship Children's Hospital in New Zealand. They are looking after him very well. It seems very professional. My brother did a bit or research and said he could not recommend a better place. He is too sick to travel anywhere at present anyway ... though they said he might be well enough to go home in a few days. Also, now that he is an NZ citizen, everything is free for him. They are even going to put a proper hospital bed in his home along with a few other essentials. I have nothing to complain about thus far.

Janet Rosen 03-23-2016 10:12 AM

Re: UFC 2.0 Ultimate Fighting Cancer
 
Quote:

Rupert Atkinson wrote: (Post 347283)
Thanks for the info so far. it is all appreciated.
My son is currently in Strarship Children's Hospital in New Zealand. They are looking after him very well. It seems very professional. My brother did a bit or research and said he could not recommend a better place. He is too sick to travel anywhere at present anyway ... though they said he might be well enough to go home in a few days. Also, now that he is an NZ citizen, everything is free for him. They are even going to put a proper hospital bed in his home along with a few other essentials. I have nothing to complain about thus far.

I'm glad you are feeling well supported where you are. Holding you and your's in my heart. Please feel free to PM/email me any time.

MrIggy 03-30-2016 02:11 AM

Re: UFC 2.0 Ultimate Fighting Cancer
 
If he has a strong organism, he will survive the chemo, if not, he won't, unfortunately it's as simple as that. I had two family members that died from that abominating, my father and my aunt. My aunt had leukemia, she wen't on chemo, on and off, for two years. It was a war that totally wore her out and she died. My father had colon cancer and died within a year of been diagnosed, as mister Goldsbury's friend, a hollow worn-out shell. From what i learned is that there are two key things in the battle against that abomination, how strong the patients organism is, how much medication and radiation it can take, and how much progress has the disease made.

There are certain therapy's that can help in some cases. 5 years before my father developed the colon tumor , he had a benign lung tumor, he did the Rudolf Breuss diet (two rounds), the benign tumor shrunk one fifth of it's former size, he even gained weight, from 65-66 kg to about 75 kg on a height of 180 cm. He had problems with his colon from youth (lesions, hemoroids.. he was an international truck driver) that all stopped. Unfortunately he didn't continue with the rest of the diet (raw vegetables), for reasons unknown to me, and started again with his old eating habits. I personally don't think that the diet itself is a cure but can rather help the organism gain strength and cleanse it. The problem is that not everybody's organism responds well to the diet. Some people i know managed, with the diet and medical treatment, to cure themselves, for others neither the diet or the medical treatment helped. Some cases managed to cure themselves only with the diet but those ones are rare.

All i can say is that my sincerest hope is that either the medical treatment or some "alternative" therapy can help cure your son. The most important thing is to newer give up, always stand strong in front of him, everybody, family and friends. You are the most important support he has at this moment.

Rupert Atkinson 07-02-2016 10:20 PM

Re: UFC 2.0 Ultimate Fighting Cancer
 
1 Attachment(s)
Attachment 1369
Just to say thanks for my friend Dunken Francis in New Zealand who organised this seminar on behalf of my son, Jake.

Rupert Atkinson 07-02-2016 10:24 PM

Re: UFC 2.0 Ultimate Fighting Cancer
 
1 Attachment(s)
And here is a seminar an old friend in the UK is organising.

Sunday 7th August 2016 in Keighley (near Leeds-ish) in the UK :-)

There are some great people about!

JP3 07-03-2016 02:06 PM

Re: UFC 2.0 Ultimate Fighting Cancer
 
Quote:

Janet Rosen wrote: (Post 347272)
Rupert, I'm terribly sorry to read this. Words fail....
But my health care mind doesn't...
As an experienced RN who is very open to alternative therapies I have to say that vit C, sodium bicarb, etc are NOT effective in any cancer. Period. Really and truly there are no valid scientific studies and the entire supposition that you can alter the acid/alkali balance in the body is absurdly against everything we know which is that the body's pH MUST stay in a very narrow range for us to be alive.
What I would MOST want to know is, do you have access to a recognized Center of Excellence for this specific disease? Are you in a position to travel for the best possible specialized care?
I'm searching for links.

Rupert, what Janet says is accurate as I understand things. If at all possible (look for support services for kids battling cancer, there are a LOT out there) and try to get somewhere that is a specialist hospital for cancer. For an example, I'd suggest M.D. Anderson Cancer Center in Houston, there are other programs out there of course, and they all share data between each other, being on the forefront of things. Oftentimes, the places that aren't specialized are doing battle with weapons that are a decade, or more, old.

Rupert Atkinson 07-03-2016 02:27 PM

Re: UFC 2.0 Ultimate Fighting Cancer
 
Hi John - thanks. We are in New Zealand. He is between home and Starship Children's Cancer Hospital. It is pretty good. Some of the docs trained in America.

Rupert Atkinson 07-03-2016 02:28 PM

Re: UFC 2.0 Ultimate Fighting Cancer
 
Hi John - thanks. We are in New Zealand and he is between home and Starship Children's Hospital. It is a good place - some of the docs trained in America.

lbb 07-06-2016 09:00 AM

Re: UFC 2.0 Ultimate Fighting Cancer
 
Hi Rupert,

Thanks for checking in, and it's great to hear that you're getting support from your aikido community. Wishing strength and comfort to all of your family.

Rupert Atkinson 07-29-2016 07:46 PM

Re: UFC 2.0 Ultimate Fighting Cancer
 
The cancer thus far has reduced in sized buy a fair amount - hard to measure an irregular shape but maybe half. Combination of chemo and good food. He has gained 11+kg, after losing and going down to a low of 46.5kg (not good for 173cm tall!). So far ... doing well. Up and about and chasing Pokemon.

Janet Rosen 07-30-2016 02:49 PM

Re: UFC 2.0 Ultimate Fighting Cancer
 
Whew. Thank you for the update. Sending love and warm wishes.

Rupert Atkinson 08-03-2016 06:32 AM

Re: UFC 2.0 Ultimate Fighting Cancer
 
1 Attachment(s)
Quote:

Rupert Atkinson wrote: (Post 347759)
And here is a seminar an old friend in the UK is organising.

Sunday 7th August 2016 in Keighley (near Leeds-ish) in the UK :-)

There are some great people about!

Apparently, Joe Curran Shihan 6th Dan Birankai is going to do one of the sessions. And also, Terry Ezra Shihan 7th Dan, Komyokan (one of my old teachers - my best teacher I should say). Wish I could be there but alas, wrong side of planet Earth.

lbb 08-03-2016 08:19 AM

Re: UFC 2.0 Ultimate Fighting Cancer
 
Rupert, thank you so much for sharing the good news. It's great to hear that your son is doing well and is in good spirits. I wish I could send him a big dish of his favorite thing to eat :-) But it sounds as if you're doing a champion job in that regard. Blessings to you as you kick cancer's ass together!@

Robert Cowham 09-18-2016 01:30 PM

Re: UFC 2.0 Ultimate Fighting Cancer
 
FWIW, check out fasting to improve chemo experience:

https://www.theguardian.com/society/...ncer-treatment

With best wishes...
Robert

Rupert Atkinson 10-11-2016 06:10 PM

Re: UFC 2.0 Ultimate Fighting Cancer
 
October 2016 Update
My son Jake has continued with the chemo and is due to start #13 soon - another 5 day affair. The chemo kind of knocks him out for a couple of days and then he bounces back and is up and about doing normal things, albeit at a 'lowered' pace. It looks like his body is quite resilient to the chemo (touching wood as I type). We feed him only the best food we can find, including various Asian herbs, spices, all sorts of vegetables, Manuka honey, and such like. At first he hated it but he is now used to eating most of it. His current situation, crazy as it sounds, is to survive the chemo, not the cancer. We visit the hospital regularly and get to meet other kids. For chemo treatment, we arrive at 7am and leave at 7pm whereas all of the many others arrive for an hour or two and leave. We are usually first to arrive and last to leave. We are past halfway through a 54 week chemo plan, or protocol, as the doc likes to call it.
"School's out forever," as Alice Cooper once said, but he has been studying economics and watching the American election 'drama' and all the commentaries via YouTube with keen interest.
PS Thanks for the above advice ... I read it a few times.

lbb 10-17-2016 09:21 AM

Re: UFC 2.0 Ultimate Fighting Cancer
 
Quote:

Rupert Atkinson wrote: (Post 348353)
His current situation, crazy as it sounds, is to survive the chemo, not the cancer.

Not crazy in context. Based on the experience of friends who are survivors of some nasty cancers, that's how it went with them: they got as much treatment as their bodies could stand, basically. That's why all the supportive care is so, so important - because it gives the body the strength to continue the treatment. It's great to hear that your son is so resilient! Well done!


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