Recovery From a Brain Tumour

Hello everyone I wanted to start this thread to see if anyone has been through or knows of anybody who has had a cancerous brain tumour and survived.


September 22nd 2007 my mother collapsed at work, she went to the doctors and they sent her away with some pain killers and said she will be fine in 7 days anyway I new there was something wrong with her as my friend who is dead now suffered the same thing (god bless him) and I was there when he collapsed, so I took her up the hospital and after test upon test she had a shadow on her brain which we found out after a 7hr operation was a cancerous Brain tumour.

After the operation she seemed fine and after an appointment blunder by the nhs after 3 months or thereabouts finally got her radiotherapy treatment, whilst having the treatment she suffered the normall effects like weakness and sickness.

When the treatment finished everything started going downhill, my mother has no short term memory at all could not remember her D.O.B, phone number, what she had just been talkin about, bank details etc, very weak,speech slower and shaking alot ,this was all after the treatment, I understand what my mother has been through and accept what is happening its just very upsetting to see a strong woman who held 2 jobs down, walked everywhere ,played with her grandkids, reduced to what she is off this horrible disease, my questions to anyone who reads this are as follows

1.Has anybody or knows of anybody been through this?

2. Are these the effects of the operation?

3. Are these the effects off the radiotherapy?

4. Will she regain her memory even just a little bit?

Sorry if I cannot reply straightaway ive got to go to stuipid work in 30 mins, but will reply when I get back on here in 8hrs

Altered,
I don't have experience of the specific's of your mothers experience.

It has been a very challenging time for your family, and I know you are proud of your mother's courage through this. keep being positive and strong for her, to give her the energy to stay strong herself!

I had a NDE myself some years ago as the result of an Accident, I spent after being in ICU some time on a ward with people experiencing the same as your mother has. I can share some of those experiences if you like, and some of the operative procedures I had that may have been very similar.

When I was younger I was in the caring profession and helped people with similar problems cognitively and socially as your mum now experiences too.

Hopefully I can give yo some info and guide you to some good resources.

Not suitable for open forums so U2U me with you email if you like.

Wishing much healing and love to you and your family at this time.


Kind Regards,

Elf

reply to post by MischeviousElf


sorry for the belated reply MischeviousElf, Thankyou very much for your post I will u2u

My girlfriend's ex recovered from a brain tumor a year ago. He was very close to death and even collected his life insurance before the tumor resided.


He swears that his recovery is due to a strict "alkaline diet" he started. He drank fresh wheatgrass shots three times a day and ate all vegetables.

Interestingly enough, Ted Kennedy's doctor contacted him a few months back to ask how he was able to fight the cancer. I am not sure how he found out about the recovery, but the alkaline diet is worth a try. At the very least it is very healthy.

Any prognosis...

Would best come from the attending neurosurgeon, and oncologist. The factors for determining the short and long term outcome is based on a variety of factors, including tumor type (specifically the cell type), the staging of the tumor, the location of the tumor (where exactly it is/was in the brain?), the perceived success of the surgery (was it completely resected, were the margins clean, was a portion deemed inoperable?), the overall health and any mitigating health factors (diabetes, hypertension). Then there is the efficacy of subsequent treatment, radiation therapy, chemotherapy and wellness regimen, how they are implemented, and the mental well being of the patient are all critical to the five year survivability standard.

No one on the internet can provide anything more than anecdotal commentary, and to cling to anything that is posted is akin to burying your head in the sand. Case in point, two great athletes have been diagnosed with cancer, Lance Armstrong suffered through a horrific bout with metastatic testicular cancer. He went on to win the Tour de France seven times. Eugene Upshaw was diagnosed with pancreatic cancer, and died a couple of days later. There is no clinical correlation between the two, it's anecdotal at best, and that's all any internet assessment could be.

It's best to leave this to the attending physicians... They didn't go to medical school for nothing.

reply to post by altered_states


1.Has anybody or knows of anybody been through this? yes... my father was diagnosed
three years ago... at the time he was only given three months to live.

2. Are these the effects of the operation? there was a dramatic change after his operation - his mobility was no more, coordination no more, personality changed and time/space seemed different for him...

3. Are these the effects off the radiotherapy? depends upon the person... my father
did not seem effected at all,,, although most patients feel awful. The actual surgery and extraction of the tumor is what messed him up not the chemo/radiation.

4. Will she regain her memory even just a little bit? this depends on what has caused her mem loss, the site of the tumor, lack of blood flow in the region, blood chemistry...
The hard is this for me was becoming accustom to the "NEW" pops (dad).

TBI (traumatic brain injury) is the most common side effect of brain cancer and its treatment. You can WIKI TBI - there are some support groups for this but unfortunately the "Decider" decided cut the national funding to $100,000.00 for the whole country.

I'm sorry if I am not helpful enough, please feel free to leave a message on my profile page which will serve to notify me if you have any more questions in this thread.

don't be shy and hang in there.

Originally posted by Mirthful Me
Any prognosis...

Would best come from the attending neurosurgeon, and oncologist. The factors for determining the short and long term outcome is based on a variety of factors, including tumor type (specifically the cell type), the staging of the tumor, the location of the tumor (where exactly it is/was in the brain?), the perceived success of the surgery (was it completely resected, were the margins clean, was a portion deemed inoperable?), the overall health and any mitigating health factors (diabetes, hypertension). Then there is the efficacy of subsequent treatment, radiation therapy, chemotherapy and wellness regimen, how they are implemented, and the mental well being of the patient are all critical to the five year survivability standard.

No one on the internet can provide anything more than anecdotal commentary, and to cling to anything that is posted is akin to burying your head in the sand. Case in point, two great athletes have been diagnosed with cancer, Lance Armstrong suffered through a horrific bout with metastatic testicular cancer. He went on to win the Tour de France seven times. Eugene Upshaw was diagnosed with pancreatic cancer, and died a couple of days later. There is no clinical correlation between the two, it's anecdotal at best, and that's all any internet assessment could be.

It's best to leave this to the attending physicians... They didn't go to medical school for nothing.

Thanks MM but do still think that to speak to people face to face or over the internet whom have had first hand experience or know of people that have had the same or similar op/disease and have come out the other side and recovered still provides a glimar of hope, a little hope is better than no hope.

Originally posted by clay2 baraka
My girlfriend's ex recovered from a brain tumor a year ago. He was very close to death and even collected his life insurance before the tumor resided.


He swears that his recovery is due to a strict "alkaline diet" he started. He drank fresh wheatgrass shots three times a day and ate all vegetables.

Interestingly enough, Ted Kennedy's doctor contacted him a few months back to ask how he was able to fight the cancer. I am not sure how he found out about the recovery, but the alkaline diet is worth a try. At the very least it is very healthy.

Thanks very much clay2 baraka Ill give it a try its funny you should say that as ive heard on many an occasion the simplest things are sometimes the best like wheatgrass, bi carb, vitamin d

Originally posted by mental modulator
reply to post by altered_states

 

1.Has anybody or knows of anybody been through this? yes... my father was diagnosed
three years ago... at the time he was only given three months to live.

2. Are these the effects of the operation? there was a dramatic change after his operation - his mobility was no more, coordination no more, personality changed and time/space seemed different for him...

3. Are these the effects off the radiotherapy? depends upon the person... my father
did not seem effected at all,,, although most patients feel awful. The actual surgery and extraction of the tumor is what messed him up not the chemo/radiation.

4. Will she regain her memory even just a little bit? this depends on what has caused her mem loss, the site of the tumor, lack of blood flow in the region, blood chemistry...
The hard is this for me was becoming accustom to the "NEW" pops (dad).

TBI (traumatic brain injury) is the most common side effect of brain cancer and its treatment. You can WIKI TBI - there are some support groups for this but unfortunately the "Decider" decided cut the national funding to $100,000.00 for the whole country.

I'm sorry if I am not helpful enough, please feel free to leave a message on my profile page which will serve to notify me if you have any more questions in this thread.

don't be shy and hang in there.

Thanks for the info mental modulator this sounds so similar to whats happend with us and sorry to here bout pops, cheers bro

Altered_States,

There are a number of published testimonials about recovery from brain cancer by (or about) those who consult a macrobiotic counselor. These counselors can and have worked in a team with qualified medical professionals during cancer recovery efforts. Here is one such testimonial from a U.S. - based macrobiotic institute (which uses the leading method of alkaline-acid balance):


www.kushiinstitute.org...


The macrobiotic community now includes millions of people around the world. Far from being a fad or extreme diet, macrobiotic meals are based on nutrient-dense foods available to traditional cultures around the world for the last several thousand years. The U.S.-based Mayo Clinic in Rochester, Minnesota is one of the leading traditional physician groups which offers on its website to work with macrobiotic counselors and clients/patients.

Here is a brief excerpt from a book titled "The Cure is in the Kitchen" about healing from brain cancer observed by a U.S. board-certified physician, Sherry A. Rogers, MD:


"While I was at a week-long (macrobiotic) seminar in the Berkshires, one young man from Europe had come there weeks prior, bedridden with a brain tumor. The week I was there was his first week out of bed. At the beginning of the week, he could barely walk, barely swallow and had an obvious facial paralysis on one side. When he closed his eyes to say prayer before dinner, he could not close the lid of one eye. Instead the eye rolled up into the head so the large, white globe was all that one could see. By the end of the week he was walking, smiling, talking, had no facial paralysis and his eyes and lids were conjugate and normal. ...While there, I met another young lady from South America who had been sent home by the most prestigious medical center in the U.S. to die of her brain tumor. Bedridden, she was taken to the Berkshires (site of the Kushi Institute, a leader in macrobiotic counseling) and today is beautifully healthy and has the nuclear magnetic resonance imaging scans to prove it."

The Cure is in the Kitchen, by Sherry A Rogers; Copyright 1991 by Prestige Publishers; 349p.; paperback.

Current prices for this book are on Amazon and on that publisher's website:


prestigepublishing.com...



On the back cover of the book, the publisher discusses the professional qualifications of Dr. Rogers: "Sherry A. Rogers, MD, is a Diplomate of the American Board of Family Practice, a Fellow of the American College of Allergy and Immunology, and a Fellow and former Director of the American Academy of Environmental Medicine. ...The common goal of her current research projects in progress is that of helping people adapt to the 21st century without resultant chronic disease."


Altered, I hope this info is helpful to you. Peace and blessings to you and your family.

[edit on 9/16/2008 by Uphill]

Originally posted by Uphill
Altered_States,

There are a number of published testimonials about recovery from brain cancer by (or about) those who consult a macrobiotic counselor. These counselors can and have worked in a team with qualified medical professionals during cancer recovery efforts. Here is one such testimonial from a U.S. - based macrobiotic institute (which uses the leading method of alkaline-acid balance):


www.kushiinstitute.org...


The macrobiotic community now includes millions of people around the world. Far from being a fad or extreme diet, macrobiotic meals are based on nutrient-dense foods available to traditional cultures around the world for the last several thousand years. The U.S.-based Mayo Clinic in Rochester, Minnesota is one of the leading traditional physician groups which offers on its website to work with macrobiotic counselors and clients/patients.

Here is a brief excerpt from a book titled "The Cure is in the Kitchen" about healing from brain cancer observed by a U.S. board-certified physician, Sherry A. Rogers, MD:


"While I was at a week-long (macrobiotic) seminar in the Berkshires, one young man from Europe had come there weeks prior, bedridden with a brain tumor. The week I was there was his first week out of bed. At the beginning of the week, he could barely walk, barely swallow and had an obvious facial paralysis on one side. When he closed his eyes to say prayer before dinner, he could not close the lid of one eye. Instead the eye rolled up into the head so the large, white globe was all that one could see. By the end of the week he was walking, smiling, talking, had no facial paralysis and his eyes and lids were conjugate and normal. ...While there, I met another young lady from South America who had been sent home by the most prestigious medical center in the U.S. to die of her brain tumor. Bedridden, she was taken to the Berkshires (site of the Kushi Institute, a leader in macrobiotic counseling) and today is beautifully healthy and has the nuclear magnetic resonance imaging scans to prove it."

The Cure is in the Kitchen, by Sherry A Rogers; Copyright 1991 by Prestige Publishers; 349p.; paperback.

Current prices for this book are on Amazon and on that publisher's website:


prestigepublishing.com...



On the back cover of the book, the publisher discusses the professional qualifications of Dr. Rogers: "Sherry A. Rogers, MD, is a Diplomate of the American Board of Family Practice, a Fellow of the American College of Allergy and Immunology, and a Fellow and former Director of the American Academy of Environmental Medicine. ...The common goal of her current research projects in progress is that of helping people adapt to the 21st century without resultant chronic disease."


Altered, I hope this info is helpful to you. Peace and blessings to you and your family.

wow!! Thanks man so much info im going to take a read, I just want thank everyone for there support and input many thanks ppl.

A.S

well if anyone reads this we have finally had a specialist confirm that my mother was probably`s given too high dose of radiation by the NHS which has caused the all these problems and still she has no signs of recovering from, does anyone think this is malpractice? because it all just seems a bit suspect after seeing so many specialsts saying "we will get back to you" but never did.

IMHO if she was given the right dose mabe my farther would not of had to pack his job in to care for her, I am no brain surgeon and do not know what procedures/protocol they have in giving radiotherapy but surely they should know what dose to give.

reply to post by altered_states


You really should contact a SPECIALISED barrister for this.

Many will do this on the following basis.

Ring a SPECIALISED lawyer, get their number from a charity or support group directly related to your mums illness.

He will take a phone or personal interveiw with you, assess if any case if worth pursuing from your initial consultation, then send out a pack to complete, with release of medical records form for your mum or LPA (lasting power of Attorney research this my freind both the financial and medical aspects), when the medical notes are recieved he will instruct send them to a Barrister as stated, who will reveiw the case, and decide what liklihood the chance of claiming damages are financially, and also the malpractise route.

They will then write to you stating their acceptance of the case if they feel it is above a 50% odd percent chance of winning in court, they will proceed if not they wont (though you can still do it yourselves, but complicated and difficult).

Up to the above point it should be ascertained by yourself initially and by reading all documentation there is NO fee or charges, and the only fee comes from a percentage of any compensation if it goes to court and is won.

All this would be explained in full in the barristers letter, costs, percentages etc if they write accepting the case, and ask for your mums or dads if unable to make her own choices (look into mental capacity act 2005 for this) signature and acceptance before they can proceed.

My freind my family were told I would never walk, talk, or function again in society if i was lucky enough to be in the 30% who made it through the next 24 hours.... that was end nov 2004. That I was going to die that night (again lol) And to say goodbye. A week later given a 20% chance of "limited mobility, with profound behavioural problems and he will need 24 hour care" again 20% of this scenario if I lived that was the ONLY outcome they said was possible.

Dec 21st that is month later I walked unaided out of the hospital with no medication, as I refused it and no care and support in place. Have managed teams since then, worked as a named person in a regulatory environment (due to previous roles qualifications) and no one is aware of any of it, when I rarely, usually to help them with a situation tell some people and they see the pics, or find out what happened to me they are to put it mildly shocked.

Doctors are amazing things but also Mechanics, and what got me out aside from some amazing healing in my NDE was waking up in ICU realising slowly waht situation I was in and having cared for for want of a better word "vegtables" previously for many years making a firm judgement that WOULD not be me. I ignored them, their diagnosis talk of what was going to happen etc etc, what they had made others think close to me etc and got myself better.

I also saw others who had little wrong with them that gradually or quickly got worse very quickly, so it is a bit of Karma, a bit of a lottery mixed in with your own mindset to.

I now myself care for someone in my family, who is experiencing neurodegeneration which is not reversable so really my heart does go out to you, you and your mum and dad are in my prayers tonight, And I hope the energy that healed and communicated with me when I was soo very close to finality listens and eases your pain somewhat.

Good Luck fight for your rights financially for any compensation, and also to ensure any bad practise is recognised.

Phone and Phone and harrass, social services, your GP the OT's get respite, contact the Citizens advice and make sure your dad and mum are getting the right benefits, mobility higher rate, attendance allowance higher rate, carers allowance. Get the local community nurse involved. Get social services through the local council to ensure carers call in 2-3 times a day to help with personal care, medication, housework, even if only for 1/2 hour morning and night to let your dad get out and take a walk, to relax. really push them as they dont come to you. You have to be persistent but help is there.

One last thing, if your mum has had any cognitive degeneration as a result and its not just physical remember no matter what her state she can hear you, she is aware... I know that personally from being a coma, things are not always as they seem to us, speak nicely always around her, say positive things, lie even "doctors saying she is getting much better every week they are amazed etc"... she still smells, hears etc... so make her sensory environment full of what she loved and likes... On the last bit even if all physical etc...

Dont let her suffering be yours and yours dads to, grow from it, give thanks for your health, appreciate more, see the patiance and oppurtunity you have to show love and care for someone... there are diamonds in this crap heap of tragedy that life has thrown your familes way, the secret is to see them and find them.

Love to you all

Elf.