Brain Tumour Survivor

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PostPosted: Thu Mar 20, 2008 12:01 am 
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Location: UK
Hello everyone

It is so humbling to be amongst all of you, people either suffering like my mother, or like me and my family as loved ones left often feeling incredulous and helpless. There is no pain like it. Our journey (or should I say rollercoaster ride) with brain tumours has been going on for 13 years now. Once there it is always in the back of your mind (pardon the pun) both of the original patient and those who are close to them. Even if you think the tumour won't come back, the effects of it and the damage both emotionally and physically never quite go away. But to survive a tumour is still a precious and wonderful thing. Miracles do happen. I want to talk about my mum and where we are now and find out if anyone can help answer some of my questions.

In 1995 my mother had a brain tumour (astrocytoma malignant) removed that was the size of a tennis ball. She had been suffering unbearable headaches over 2 years that eventually culminated in a series of really bad seizures. She had the tumour removed by Prof Azziz at The Ractliffe Hospital in Oxford (excellent neurosurgeon!!) and then the full 6 week dose of radiotherapy which she hated at The Royal Marsden. They believe that the tumour was there for quite some time but because of the nature of my mum she did not alert anyone how bad she was feeling as she is very selfless and doesn’t like to cause any worry! So she used to just take lots of paracetamol and grin and bear it until it became bearable no more. Anyway. Miracle. No supplements other than the surgery and radiotherapy and no recurrence for TEN YEARS!!!!!! No more treatment. Nothing. In this time she travelled the world with my dad, saw my brother graduate as a Lawyer, become a partner of the firm at only 32 years of age, see me settle into a good job, get married and live in a lovely little village and very happy. She's also spent lots of time with her mother at our holiday home. She's really had lots of long lovely walks with her little Westie. Life's been good!!!! She said ,"It's '95, I'm 45, and I'M ALIVE!!!!"

Over the last few years I’ve noticed mum has been leaning to her left side a lot and having quite a few bad falls. So here we are, 13 years later , and in September 2007 I found her after a very bad fall. She was diagnosed with another brain tumour. She couldn’t believe it after all these years. She had a biopsy and it is an Astrocytoma, Grade II and again malignant but this time inoperable about 3.5cm. They said there was cerebral loss in the right parietal lobe and an awful amount of oedema. New enhancing mass in the right parietal lobe indenting the right lateral ventricle. They could see postoperative gliosis and focal loss in external capsule, the extent of parenchymal T2w hyperintensity under craniotomy site similar. She went onto temozolomide for 5 days and came home. She was paralysed now down her left side. I found a healer who I had heard about in desperation who started to see my mum. I also did a lot of research on supplements and gave mum:

Flaxseed oil/cottage cheese

Curcumin

Ginger

Borage Oil

Barley tablets

Shark Cartilage

MSM

Cellular Liquid Zeolite

Beta Glucan

Mum’s movement started to improve 2 months later and she started walking again but we had to be with her to make sure she was balanced ok and didn’t fall. Mum was also on Decadron at quite high dosage.

By December she declined rapidly and we were all very worried. She lost a lot of movement and spatial awareness on her left side again and her lymph were all swollen. We had another MRI very concerned which instead of showing THAT THE TUMOUR HAD GROWN IT SHOWED THE OPPOSITE - IT HAD SHRUNK - MORE THAN SHRUNK ... THEY COULDN'T SEE IT!!!! “The tumour is no longer visible, it can’t be seen”. This shocked us as mum’s lack of movement and generally malaise would have told us the contrary. The Oncologist was shocked as was the neurologist (mum didn’t have a neurosurgeon as tumour inoperable) and they said it was very surprising but could maybe be down to the steroids or the 5 days of chemotherapy. I don't know what to think. It was amazing.

A few days after New Year mum had a fall whilst trying to get to the toilet which resulted in her cracking her spine (mild compression) and she had to stay in hospital for 11 weeks for it to heal. In this time she became very weak and very bloated and her movement really bad. Just over a week ago she had a seizure and we pleaded for an MRI even though all the doctors had said there was no point as the MRI in December had shown such an improvement, we had also opted to discontinue chemo but we did stop the supplements as I couldn’t keep administering them in hospital.

This MRI in March this week showed that the tumour was back at 4cm and in the same place but right near the central nervous system. Mum’s temperature control seems effected, she is very weak (can’t get out of bed) and totally paralysed down her left side. Every day I feel like my stomach (not my heart, it's more gut-wrenching than that) is ripped out I have all sorts of emotions - I don't want to lose my mum, but I want her to fight ... she wants to fight but I don't want her to suffer. I can't imagine life without her. I was at the point of trying for our first child (got married 2 years ago) and now don't know whether I'm coming or going or what the future holds and she's such a big part of my life.



THIS IS WHERE MY LAST POST GOT CUT OFF BY ACCIDENT SO PLEASE RESUME READING HERE:

We have now been told they will give mum Temezolomide for 5 days (28 days off) and maybe radiotherapy (as it has been 13 years - i.e. over 10 - since her last lot). She will be going to the man who gave her original radiotherapy 13 years ago! He is now a professor at The Royal Marsden. However, I think Gamma Knife radiosurgery looks the best - they have the state of the art machine at The Cromwell hospital called Leksell Gamma Knife Perfexion so hopefully she can have that we shall investigate.

Ben Williams, a 13 year survivor of GBM IV has been a great source of inspiration and learning by making me aware both in his book 'Surviving "Terminal" Cancer' of different chemo agents but also on personal email that Temezolomide (Temodar) and Celebrex or chloroquine have shown real effectiveness in killing tumour and stopping blood supply. It is strange as I was so against orthodox medicine but now I'm seeing how many survivors there are by using orthodox as well as alternative therapies. I am now going to give mum the following supplements:

Genestein, Melatonin, Green tea extract, borage seed oil, Barleans borage and flaxseed twin, PSK, Curcumin, Bromelain and TRY and get mum to do the Budwig mix of cottage cheese and flaxseed oil with some brazil nuts and berries added.

I am also going to give her (at the advice of Dr Prasanta Banerji) Ruta 6 and Calcarea Phos and Hydrocyanicum acid as his protocol is having a massive positive effect on brain tumours.

Finally THANK YOU for your patience reading this! I wanted to ask:

Where do I buy Ruta Gr.6c in pills No.40, 2 pills a dose

Calcarea Phos 3X, in tablets, 2 tablets a dose

Hydrocyanicum Acid. 30c, in pill No. 40, 2 pills a dose

Please let me know any thoughts you have I can't wait to hear from everyone. It's taken me a long time (as you can see) to build the courage to join a forum like this. For so long I've just read but thought maybe I could help and learn more by writing to you all.

In hope,

Clare


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PostPosted: Tue Jun 24, 2008 8:58 am 
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Location: Brisbane, Australia
Dear Clare

It has been a few months since you posted here & I was wondering if you had any further updates on your Mother?

Thinking of you,
Cheers, Angie.


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 Post subject: Reply to Angie
PostPosted: Tue Jun 24, 2008 6:56 pm 
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Hello there

I've thought of you and your brother - how are you both? How is he doing? I haven't been on here for ages.

My mum is still putting up a fight. I've copied and pasted her story below. I'm concerned that the cancer is becoming resilient to the chemo though and we never checked whether she had certain gene deletions for the temodar. I'm going to speak to her oncologist about it. I do hate giving her the chemo but I think I've no choice.

Let me know how your brother's doing.

Love Clare x
Proud and honoured d/o Judy 57 y/o
1995 right lobe tennis ball sized oli with headaches, seizures … resected, full whack radiotherapy then no recurrence or treatment for 12 YEARS!
Sep 2007 After a couple of years ‘clumsy’ falls dx 3cm/3cm inoperable astrocytoma Grade II in right parietal lobe now causing left sided paralysis,
October 2007 Put in Willen Hospice, unable to walk, wheelchair bound, told will never walk again, given 1st lot of Temodar for 5 days and supplements (Shark, Curcumin, sporadic flaxseed oil/CC, ginger, healer) and 8mg of steroids (decadron/dexamethasone). Allowed to come home!
November 2007 walking again! But only last for 2 weeks before visibly becoming weaker again but still shocked the doctors – we are putting it down to supplements and healer but later realise it’s not that clear cut)
December 2007 clear MRI – miracle – the doctors can’t believe it – “the tumour is no longer seen” however although it apparently isn’t showing on the MRI we are concerned as by now she’s not walking again and has to be assisted to the commode etc and to do most things and is clearly depressed (she’s normally very positive). Oncologist puts her on 16mg decadron (dexamethasone) to see if this helps with movement as could be edema issue.
2nd January 2008 left sided paralysis is back, very big with lymph swelling and the increase of steroids. Fell on way to the toilet whilst being assisted & broke spine – had to be taken to hospital on stretcher. Stayed there for 6 weeks while spine ‘heals’ … in this time muscles get weaker and weaker.
1st February 2008 moves to rehab unit for spine - Really goes down hill (very poor food, no supplements, no fresh air, wheelchair bound and needs assisting for everything apart from eating. Still having healer each week. Lymph swelling is becoming a real problem and very low mood.
5th March 2008 mum back home but needs assistance and wheelchair bound even though back has now healed. Needs hoist to be pulled up.
7th March 2008 mum has a seizure, rushed to hospital
11th March 2008 MRI – tumour is back 4 cm by 4 cm. It looks like we’re losing her she can scarcely sit up in a chair, sweating profusely, has to be hoisted to go to the toilet etc. Cannot move left leg or left arm AT ALL. Not even her little toe!  Increase steroids back to 4mg (was on 0.5 mg). TOLD THERE IS ABSOLUTELY NO CHANCE WHATSOEVER THAT SHE WILL EVER WALK AGAIN. SHE CRIES IT BREAKS HER HEART. Stuck in hospital totally bedridden suffering constant daily indignities.
17th March 2008 starts Poly-MVA and back on supplements (see below) and lots of reflexology
20th March 2008 can wiggle left foot and move left hand. Starts 5 days of 400mg Temodar (this is the 2nd lot of chemo, had 1st back in October 2007 but stopped as believed in healer)
18th April 2008 MUM HOME!!!!
19th April 2008 3rd round of Temodar 5 days/21 cycle religious with Poly-MVA and foot rubs and supplements
21st April 2008 MUM WALKED AGAIN!!!!!!!!!!!!!!!! With a frame! Speech is perfect. Is using left hand again. Everyone’s shocked. Poly-MVA, Temodar and Supplements must have something to do with this!
25th April 2008 started Clomipramine 125mg a day (proven to induce programmed cell death (apoptosis) in brain tumour cells) See http://www.port.ac.uk/brainlab and http://news.bbc.co.uk/2/hi/health/4066593.stm this is an anti-depressant so a double whammy if you get my drift!!
May 2008 NOW WALKING WITH A CANE! Speech perfect, still swollen due to steroids but a lot less than before. Still trembles slightly in left and right hand BUT considering the Doctors said she’d never walk again and we thought we were losing her in middle of March this is just UNBELIEVABLE! We are grateful for the blessing of every day with this beautiful woman.
22 MAY Mum’s tumour has SHRUNK BY 75% THE ONCOLOGIST WAS GOBSMACKED AND VERY HAPPY!!! She’s sleeping a lot but moving and walking with a cane and speaking perfectly  Never give up! I’m thinking it must be the Temodar/Temezolomide and the Poly-MVA and Shark Liver Oil. Also the mushroom extracts keeping her healthy. Next lot of chemo in a couple of days.
1 JUNE 2008 Mum has had a few dizzy spells, think she may have had slight seizure in shower as she ‘went out of it’ and bit her lip. Since then movement on left side weaker again.
10 JUNE 2008 Has urine infection but is also passing a lot of water out of back passage for some reason
Supplements: Poly-MVA, Shark Liver Oil, Astragalus, Green Tea Extract, lots of dark red/black grapes, Noni juice, Curcumin, Barley pills, Bromelain, Coriolus Versicolor (PSK), Reishi, Co Q10, 4000mg fish oil daily, whey protein when possible, Ellagic Acid, Quercetin). Also Clomipramine added. Looking for quality Boswellic Acids supplement to get her off steroids but can’t find 85% content in England – any advice? Also considering adding Celebrex. Concerned about Avastin due to internal bleeding?


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PostPosted: Tue Jun 24, 2008 9:55 pm 
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Location: Wantirna/Melbourne/VIC
Inspirational!

You would not see a better fight for survival than this in my book.

What can one say to your mum? Keep on keeping on comes to mind. I'm sure all of us here in Australia wish her the best for the future.

Give your mum my best wishes and she is not to let the beast take her till she's ready to go on her terms. That's also my aim for myself by the way.

Fraser.


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 Post subject: Fantastic!
PostPosted: Wed Jun 25, 2008 11:21 am 
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Location: Brisbane, Australia
Dear Clare

It was such a good & positive post about your Mum, I'm so happy she is doing well & boy doesn't she deserve it! What a journey you have been on!

My Bro is due for an MRI on Thur this week, so feeling much anxiety & trepidation at the mo. I will update when we know more. Thanks for your kindness & concern Clare.

I'm sorry can't help with the supplement question? I have heard Avastin can cause internal bleeding too. I work in a GP pratice & recognise the word- Celebrex but have no idea what it's for?

Did you access the Poly MVA in the UK & was it expensive? I would be interested to know.

Thinking of you.

Hugs, Angie.


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 Post subject: clare joanne
PostPosted: Sun Jun 29, 2008 12:53 pm 
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Location: Perth WA
Hi clare joanne,
I can help you with the supplements that will help your mum I am sure you can find it in the UK. Co-enzyme or Q10 is cellular energy and for tumor survivors it needs to be taken at 400mg per day. this delivers energy to the ATP and is also a very strong antioxidant. this in return will give the bodythe energy to fight.
Hope this helps your mum.



Best wishes
Phebe


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 Post subject: Paw Paw
PostPosted: Mon Jun 30, 2008 7:48 pm 
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Does anyone know about this, taken 4 times a day with meal, it is meant to attack the cells that become resistant to chemo .... I'm starting mum on it with the Poly still, but she'll have to stop the CoQ10 for a while as the two don't go together ... just wondered if you'd tried Paw Paw?

Clare X


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PostPosted: Mon Sep 01, 2008 3:19 am 
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Hi

Some of you know me ... some may not ... I'm desperate to speak to people like us ... the ones who wonder sometimes why life is so unfair, but who also feel so blessed. There are a lot of us on here. But there are also a lot of us very scared I know. And today my stomach's in knots.

My mother has been fighting for 13 years although admittedly she did relax after 5 years when it hadn't come back (that was in 2000). But she started having unexplainable falls as some of you know and her history is below for those who don't. Well back in 1995 to beat the oli she had resection at Oxford, England with the wonderful Profesor Aziz and then the full whack of radiotherapy at the Royal Marsden. In September last year 2007 'it' came back. This time inoperable. She has lost all movement down her left side. It is absolutely heartbreaking. I feel sick to the stomach as I feel we've let her down by not getting her the very best care. Her original neuro-surgeon from 13 years ago will not operate as he says "she wouldn't be Judy anymore". 13 years ago it was in her right temporal lobe making her violently sick, seizures and dementing headaches. This time it's in her her parietal lobe and causes deficits on her left hand side. The problem is that we've had her on standard Temezolomide at 400mg a day for 5 days on, 23 off since October last year - we had a break until March this year as it grew so much and in March I thought we were losing her. I never really wanted her on chemo you see. But she was in hospital and couldn't even move and we had no choice. I also feel that if you are going to do chemo, unless you are very responsive to Temezolomide which thank God some people like our friend on here (Chris) are ... that's great - if you have the missing gene - but they never tested mum's biopsy for that. So unless you have that gene missing I've always believed that chemo cocktails are far more effective and keep the tumour cells in disarray which is what we need to happen as you know. Ben Williams advocates this approach having himself beat a GBM 13 years ago (same year as my mum actually!) However, our oncolgist didn't go for the cocktail approach and my dad didn't help matters by telling me not to get involved it was their decision. He's not the sort of person who researches and is quite submissive around medical professionals :( Anyway they said she wouldn't make it to Xmas 2007 but she did and is still fighting. But it was heartbreaking as her latest MRI came back that the tumour has shrunk but there is something else (could be edema or tumour) near it ... so we're sent to Professor Michael Brada at the Royal Marsden who gave her radiotherapy 13 years ago. It was awful. She went in in her wheelchair with a BIG smile on her face happy to see him (and as ever always positive and considers herself lucky - that's the way she is ... she's a very beautiful soul ...) anyway, later it was like (in her words) she had been "led like a lamb to the slaughter" because he just told us bluntly that he couldn't work with the scans, there was no contrasting dye agent on there, but from what he could see it was no longer a grade II, but a grade III or IV, "surely you knew that by the way your mother is. There is no hope that is the reality". I said, "There's always hope" and he said, "yes, realistic hope". She broke her heart it was such a blow and such a terrible way to be told it. So now he says that she's too ill for any trials and cocktails don't work. He said that if Ben Williams and others had survived GBM they were the lucky ones "and that is if they actually had what they said they had". I couldn't believe it. I even burst into tears. It was like being in hell. And then when we left the evening was dark and summer is coming to an end (if you can call what we've had here in England a summer!) and it all felt so very dark. To see my beautiful mother's face turn from a big smile into those frightened tears ... I'll never get that image out my head. He said she can try CCNU and daily temezolomide - I can't quite remember what he said I was in shock. Suffice to say that he had her go all the way in the car, made us wait nearly an hour, just to tell her that she had no hope. He couldn't even read the scans properly. Is there anyone who can tell me if there's a neuro-oncologist in England who you could recommend who would give my mum a chance? In fairness to this man he did say he wouldn't put my mum through radiotherapy as she was too ill. I asked him about photo-dynamic therapy and he said no. I asked him about Avastin and he said too expensive and not covered on insurance (we do have private health care, in England we have BUPA). He said Avastin wasn't worth it not enough evidence. I asked him about Tamoxifen and he said no evidence. What am I to do? I am heart broken. Bless her. I have her on Shark Liver Oil, Astragalus, PSK, Soy Genestein, Fish Oil, GLA, Poly-MVA (considering Protocel 23 or 50), considering IP6 ... anyway ... I just wondered if anyone could help. She's fought for so long. And I saw on her face she does not want to die and as long as she wishes to fight I want to help her. But I feel so alone as my family are very pragmatic/unpassionate people about experimental medicine/complimentary therapies. They believe loving her is more important. So do I. But I also passionately believe in supplementation and orchestrating drugs to attack the tumour from all angles. Also, how can he read a scan that he can't really work with? And how could our main oncologist tell us 2 weeks ago that the tumour had continued to shrink and he was optimistic, then this Professor tell us that it had gone up to grade III or IV (he couldn't even tell us that without being vague!) and just sweep his hand over mum's scans (with her sat there in her wheelchair behind him on her own just looking at his nonchalent gesturing over her the right side of her brain scan) saying, "see here? This is ALL diseased, all abnormal .... this is all tumour". She said bearly able to speak, "can it not be edema?" "No," he said, "it's tumour". It was all so cold. She broke her little heart. Even my dad was gob smacked. My brother was angry that DAd didn't check first what Professor Brada wanted to say. But it's obvious he hadn't even looked at the scans anyway .... even when we got there ... we waited 40 mins or and then he looked at them when we went in the room and said he couldn't really work with them. I wish my dad understood that we DO have rights and choices and not to be so submissive as this is what ends up happening!!

I feel I'm letting Mum down. Can any of you kind people tell me what you'd do? I know we're all in this terrible mess and I wish I could help you all. I can only offer what I've done for my mum. My belief in supplements, in alkaline water, the chi machine for those who are immobile but also even those who can walk well - it benefits all, poly-MVA if you can afford it, if not, Protocel - and a magnetic pillow. And now stress. Which, as you can imagine, DIDN'T happen for my poor beautiful mum being dragged all the way to London to be dismissed by a professor she once trusted in a void of vagueness and bleakness who hadn't even looked at her scans before she'd left to make that dreadful journey. Awful.

Can anyone tell me if there's a neuro-oncologist that could help her in England or a clinic? Or anything?

love Clare Joanne



In 1995

After years of increasingly unbearable headaches culminated diagnosed with an aggressive, malignant tumour the size of a tennis ball in her right temporal lobe called an Oly Grade II. Resected. Full whack of radiotherapy. “I’m 45 and I’m ALIVE!”

Losing her balance

Unexplainable falls; these episodes were put down to “mini-strokes”, increasing tiredness & lack of energy, unsteady on her feet, leaning over to her left side and weak on left side.

September 2007 – after 12 years of grace the tumour is back

After a series of “clumsy falls” leaving her black & blue, I came home one lunchtime to see her staggering with blood everywhere – she’d just fallen off the chair whilst sat at the computer. We took her to a neurologist. She was confined to bed, declining rapidly, she was now given the those awful words. Another aggressive, malignant brain tumour, Astrocytoma Grade II in her right parietal lobe, 3 x 3 cm. And to our horror, inoperable. Too deep in the brain. Prognosis gone by Xmas 2007.

October 2007 Mum is admitted to Willen Hospice, unable to walk, wheelchair bound, told she will never walk again, given 1st lot of Temodar for 5 days + supplements (Shark, Curcumin, sporadic flaxseed oil/CC, ginger, healer) & 8mg of steroids (decadron/dexamethasone). Mum made a dramatic improvement; allowed to come home!

November 2007 WALKING AGAIN for 2 weeks, then symptoms of left sided paralysis & weakness start to return.

December 2007 clear MRI –miracle - the doctors can’t believe it – “the tumour is no longer seen” however Mum is becoming weak again very soon after scan results. Oncologist puts her on 16mg decadron to see if this helps with movement as could be edema issue. We can’t understand how they can’t see tumour when clearly she’s so weak.

2nd January 2008 left sided paralysis is back, very big with lymph swelling. Fell on way to the toilet whilst being assisted & broke spine – had to be taken to hospital on stretcher. Stayed there for 6 weeks while spine healed … in this time muscles get weaker and weaker from being confined to bed

1st February 2008 moves to rehab unit for spine - Really goes down hill (very poor food, no supplements, no fresh air, wheelchair bound, needs assisting for everything apart from eating. If chemo helped initially in Oct, she hasn’t had any since then. Still having healer each week. Lymph swelling is becoming real problem. Understandably low.)

5th March 2008 back home but needs assistance; wheelchair bound even though back has now healed. Needs hoist to be pulled up. Terrible indignities suffered.

7th March 2008 2nd day back home mum has a seizure, rushed to hospital

11th March 2008 MRI – tumour is back 4 cm by 4 cm. Looks like we’re losing her she can scarcely sit up in a chair, sweating profusely, has to be hoisted to go to the toilet and is delirious. Cannot move left leg or left arm, not even her little toe! Increase steroids back to 4mg (was on 0.5 mg). TOLD THERE IS ABSOLUTELY NO CHANCE WHATSOEVER THAT SHE WILL EVER WALK AGAIN. SHE CRIES IT BREAKS HER HEART. Stuck in hospital totally bedridden suffering constant daily indignities that those who have this awful disease and experience chemo can testify to.

17th March 2008 Smuggle Poly-MVA into Mum & back on supplements (see below) & lots of reflexology in bed trying to get some movement from dead legs

20th March 2008 can wiggle left foot & move left hand. Starts 5 days of 400mg Temodar (this is the 2nd lot of chemo, had 1st back in October 2007 but stopped as believed in healer)

18th April 2008 MUM HOME AGAIN J !!!!
19th April 2008 3rd round of Temodar 5 days/21 cycle religious with Poly-MVA & foot rubs & supplements

21st April 2008 MUM WALKED AGAIN!! With a frame! Speech is perfect. Using left hand again. Everyone’s shocked. Continuing with the Poly-MVA, Temodar & Supplements.

25th April 2008 I got the help of Professor Pilkinton (Professor of Cellular & Molecular Neuro-oncology, Director of Research, School of Pharmacy & Biomedical Sciences at University of Portsmouth) an old drug called Clomipramine 125mg a day to induce programmed cell death – apoptosis - in brain tumour cells. See http://www.port.ac.uk/brainlab and http://news.bbc.co.uk/2/hi/health/4066593.stm this is an anti-depressant so a double whammy if you get my drift!!

May 2008 NOW WALKING WITH A CANE! Speech perfect, still swollen due to steroids but a lot less than before. Still trembles slightly in left and right hand BUT considering the Doctors said she’d never walk again & we thought we were losing her in middle of March this is just UNBELIEVABLE! We are grateful for the blessing of every day with this beautiful woman.

22 MAY Mum’s tumour has SHRUNK BY 75% THE ONCOLOGIST WAS GOBSMACKED & VERY HAPPY!!! She’s sleeping a lot but moving, walking with a cane & speaking perfectly J

11 June 2008 Mum has had her 4th lot of chemo having been to her beloved caravan in Cromer, Norfolk. She has now been told she has a urine infection so is weak and sleeps an awful lot but she’s still intent on fighting this every ‘step’ of the way. Blood pressure can get high and blood platelets low.

30th June Very weak, had 5th round of chemo and is in bed sleeping a lot but can walk a tiny bit with frame/stick. But very dependent on carers even to be pulled up in bed, and her left side is weak and her right hand trembles.

1st July Very shaky even on her right hand

8th July Has practically lost movement again L

9th July Down to just 2mg decadron no longer 4mg

NEED TO UPDATE BUT CAN SEE REST IN MESSAGE ABOVE :(



Supplements: Poly-MVA, CoQ10, Shark Liver Oil, Astragalus, Soy Genestein, Whey Protein, Green tea, fish oil, melatonin, reishi, PSK, quercetin, milk thistle, bromelain – desperate for boswellia with boswellic acids of plus 80% for edema … have just bought Paw Paw will consider using that and having a break on Poly-MVA



Considering Cantron/Cancell/Protocel


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PostPosted: Mon Sep 01, 2008 10:00 pm 
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I believe that you need a second opinion. Although he treated her originally, he hasn't if I understand correctly, got a biopsy to work from this time.

A radio-oncologist prob won't know as much as the neuro-oncologist you are rightly seeking, about the right combination drugs.

Here's my advice on what to look for when a specialist is reading an MRI. They don't read the report. They clip the current and previous scans up to a lightboard and look closely at it.

Its very possible that her tumor has progressed over a period of time, this fits her history. You see there is progression and malignant progression. Most specialists assume malignant meaning a change of grade. Only a sample can confirm this.


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