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somehope
Member since Mar-30-08
11 posts
Mar-30-08, 08:00 PM (PST)
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"formerly labrat's wife- it's been a while"
 
   For those of you who have been here from the beginning, you will know me as labrat's wife. I can't find my original post anymore, but it was sometime in Feb or march 2007. I told the story of my husband, who had been diagnosed with a very aggressive Glioblastoma Multiforme(brain tumor) in july 2006. After surgery,radiation and chemo(temodal), his tumor recurred by November 2006. He had a second surgery in December 2006. Prognosis after recurrence is pretty dismal. We waited for symptoms to show up again as I desperately peruesed the internet for any possible new treatments. In January 2007, we heard about DCA.

By a set of odd coincidences, or what I call 'my angels at work", I was able to obtain naDCA from a private source by Feb 10 2007. In those days, we all remember how difficult it was to obtain, and I truly counted us as "the lucky ones".

I posted only once, as much was at stake back then,including my huband's health care, and several people involved asked me not to post again so I repected their wishes, since they were truly our saviours.

My husband began taking DCA Feb 11, 2007. I believe, as far as I can tell, he was the earliest human cancer guinea pig. I felt guilty for many months,not posting, leaving many to think the worst. But I have watched and read many stories, cried for many, and prayed and thanked God for many.

Now for the hope. My husband is not only still alive, he has had no tumor growth since January, 2007. He has been on DCA for over a year now. There have been many ups and downs over the year physically, but NOT due to brain tumor growth. I only told our oncologist last week that he has been using DCA. The Doctor was so incredulous that his MRI once again showed no growth, he said " no one would have expected you to be here, I can't really explain it". So I finally told him about the DCA. To my delight, the oncologist was not only on board, but told us he had actually been prescribing DCA to some other patients and one had had very relevant tumor reduction.Unfortunately, health insurance in Canada does not cover the cost of DCA, so it comes at a cost 1200-2400/month from a pharmacist.

As for the ups and downs- here is a quick synopsis of what I can recall. My husband was doing fine after we started the DCA in Feb(working, walking , everything pretty normal) until Mid march 2007. He was taking chemo, 16 mg decadron(we had no idea that this was way too much) , and 25/mg per weight Dca. One day in March , he sat down after a very long workday, very tired, and simply could not get up again. of course, I thought the worst was happening- tumor growth. I called doctors frantically-they told me to up the steroid as high as 24, and I upped the DCA to 50- thinking my husband was dying and to try anything.I was also in the process of changing oncologists, since I did not like the first one. When he finally got an MRI almost 3 weeks later- we were all shocked to find out that not only was there NO tumor growth, but the tumor was smaller and the edema (brain swelling)was in check. The new oncologist decided that he was suffering from Decadron(steroid) poisoning. Of course, he didn't know about the DCA. We'll never know if the Dca contributed to my husband's weakness. Just to be safe, I lowered the dose to 12.5. He has basically been on and off 10 to 12.5 for a year now.

Unfortunately, my husband has been pretty much wheelchair bound since last March. The doctors feel it is from the long term steroid use. I don't know. I will always be suspicious of the acuteness of his weakness after only 1 month of DCA use, but then again- he was on ridiculously high steroid amounts for a very long time-prescribed by the first oncolosist who didn't think there would be a 'long term'.

My husband has battled many problems this year: falls, pneumonia, very swollen limbs and feet, nausea, very painful gas. We don't know which medications are causing what.

Because there has been no tumor growth for 12 months, the Doctor has taken him off Chemo (temodal). My husband weaned off the Decadron over the last year, but his body is now evidentally physically dependant on it and he needs some amount or he becomes nauseous and can't eat. So he is now on 4mg decadron again. I hope to be able to take him down to 2 because the Dec causes limb swelling and muscle atrophy. He is now using a walker and we both believe he will be using a cane and more stable within months. The Doctor says even though he is not 'cancer free", he is in remission( a term rarely used for Glio patients). When my husband asked the Doctor if he should stop using DCA, the Doctor replied " absolutely not!"

So... there is some hope. I believe that it is the DCA keeping my husband's tumor in check. I believe his Doctor also believes that now. I also believe that there are side effects to DCA, and use of it has to be weighed against the seriousness of the disease. But I am just a labrat's wife, not a doctor... and I thank God for the scientists working for a cure.

I keep you all in my prayers every night and have all year. We have some hope.


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formerly labrat's wife- it's been a while [View All], somehope, 08:00 PM, Mar-30-08, (0)  
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Sandramoderator
Member since Feb-27-07
887 posts
Mar-30-08, 09:56 PM (PST)
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1. "RE: formerly labrat's wife- it's been a while"
In response to message #0
 
Welcome back!!

It's great to hear from you again, and even better to get this fantastic news!

May I ask if your husband has been on any supplements to try to counter the side effects he's experienced?

Take care, wish you the very best!
Sandra


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somehope
Member since Mar-30-08
11 posts
Mar-30-08, 10:55 PM (PST)
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2. "RE: formerly labrat's wife- it's been a while"
In response to message #1
 
   He has taken B1 , only 100- 200 mg daily. He has cold hands and numbness in the hands and feet. However, his disease is neurological, and i believe he complained somewhat of these things before DCA. I've read that B1 can promote cancer growth so I was reticent about megadosing him on it. I'm pretty sure that the neuropathy has increased since DCA use- so I give him the B1 hoping it will help a bit.

No other supplements. He drank a lot of green tea for the first 6 -8 months. He also ate cottage cheese and flax seed oil. As we weaned him down from the steroids, his appetite started decreasing and he couldn't tolerate many foods.Then he fell in January, had another bout with pneumonia and was also weaned down from the decadron to 0. He was really really sick and unable to stomach anything. Basically bedridden since January 1. Doctors seemed perplexed. Finally after 3 days of vomiting, an Emerg Doc gave him a Decadron drip. He's been doing good ever since.

So, for the past 3 months, he basically couldn't tolerate much of anything, including his medicine. I had him on and off the DCA, but put him back on a week ago. (I usually have him on 3 weeks , off 1- experience seems to have taught us that he weakens in week 4).

Now that we have an oncologist who is no longer working in the dark, and , even better, actually has probably been researching the drug as well-I am hoping he has gained some knowledge and may guide us with dosage and possibly supplements. Though this is anecdotal, he mentioned that there was a 'gag' order on the Alberta studies so he couldn't be specific- but he said there have been some positive results. Again, he wasn't specific- but I'm going to assume that since he is prescribing DCA, he has done as much research as possible and has possibly gotten some info from the 'study'.

I will also mention that my husband never had a seizure with this disease until Sept 2007. Seizures happen to 75% of BT patients. He was taken off Dilantin (prescribed to most BT patients to prevent seizures), because he had never seized and Dilantin makes Decadron less effective. He had been off for 5 months when he had an extremely severe seizure. Coincidentally, I had upped the DCA to 25mg that week, and he had a cup of coffee that morning (the first since being on DCA). I never gave him coffee again, though he continued to drink green tea occasionally. I also lowered the DCA dosage again. The seizure was extremely traumatic , and set him back physically quite a lot.

As I am my family's sole support now, time and money are rare here. So I am conservative about supplements- but I am more than interested in what may help with side effects. We have 3 kids at home, and I work (thank God, at home,) 10 hours a day, while caring for my husband. This journey has been incredible, as we also lost our business in the mix and I have had to reinvent the wheel here. Didn't have a clue that I had it in me as my husband did everything for us.We have all learned so much. A second chance is the most wonderful gift one could ever receive. I wish it for all of us.


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Sandramoderator
Member since Feb-27-07
887 posts
Mar-30-08, 11:20 PM (PST)
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3. "RE: formerly labrat's wife- it's been a while"
In response to message #2
 
WOW! You are AMAZING! I hope and pray your husband continues to improve.

From what I've read, the supplements that may help with PN are:
R+ lipoic acid
Benfotiamine (a more bioavailable form of thiamine)
B-12 (this helps protect the myeling sheath that covers the nerves)
I had tremors from using DCA and this helped.

Take care - HUGS of encouragement to you!
Sandra


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oracle
Member since Mar-17-07
197 posts
Mar-31-08, 02:16 PM (PST)
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4. "RE: formerly labrat's wife- it's been a while - there t"
In response to message #2
 
Wow your story is a lot like ours in the following ways:

Its been about a year and my wife is walker bound. She can get around but her legs are numb and get cold etc. I also took her off DCA two different times and both times the cancer started to come back! We had her clear and and down to 2.3 centimeters at te primary site for being riddled with mets and tumors from her liver to her lymphatic system but when we stopped everything failed including the chemo's.

I thought like you it was DCA but have to say now that your husband like my wife is not suffering like this from DCA I am positive after seeing the horrendous impact of these FDA approved methods for destroying cancer. I stepped back and took a hard look at most chemo folks fighting terminal stages and its very clear to me DCA is not putting my wife in her walker and that its the chemicals of these drugs.

The body is assaulted by chemos especially the nerves at the cellular level to the point of not being able to defend itself over a long periods of treatment where chemicals are preventing normal metabolic functions.
The main methods are:

1. Struggle against the stroma degradation and invasion by the neo-
vessels
2. Inhibition of activated endothelial cells.
3. Inhibition of angiogenic factors production and of their
receptors.
4. Inhibition of the VEGF signal pathway, by peptides blocking the
bond between VEGF and its receptors through the inhibition of
intracellular transduction of VEGF signal.
5. Poisening the cells with chemicals so strong that if they hit the
air they could melt the tile floor in front of your eyes and cause
an immediate staff panic!.

DCA is used on new born babies and there are no studies out that I have found that show the type of physical destruction my wife has experienced but for the above chemo derivitives the list is very very long!

I cannot tell you how much I can empathize with your situation and wish you were not going through it. I have started Lien on lots of exercise from sitting and standing positions. I have her walking using my arm until she cannot walk any more so she can get her body and her brain accustomed to her new condition which "will" allow her mind to adjust and "new" unused muscles to form that will get her back on the road to recovery.

The body will re-route and find new pathways if there are any it can activate and build but it cannot do that unless its forced to hence the forced "Wobbly" walks that do seem to be working for her.
SHe was not able to lift her leg into the car last month but now she can with ease!

We also started her on Accupuncture every week on her chemo days.
She is taking large amounts of L_Glutamine, Magnesium and was taking a lot of potassium but it seems to be ok now. I put in in her food any chance I get since heat does not hurt it.

We will never stop DCA again now that we have her tumor site shrinking again - our oncologist says its a good idea to keep doing the dca as well. He is pretty sure it works and is helping make the chemos much more effective. He will not prescribe it for cancer but
Dr. Chen is bright and will not stand in the way of our struggle for life. I cannot say how lucky we are to have such a brilliant Human Being on our team and just hope you do as well.

I pray for your hubby and know he will be ok - just remember your not alone and never will be! Human beings transend all physical bounderies when it comes to compassion and love. We are with you and will stay with you both in our hearts. Do not fear what you have already defeated and know things will be ok and that you husband is strong and stable now.

God Bless Us All
O

Oracle


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somehope
Member since Mar-30-08
11 posts
Mar-31-08, 06:28 PM (PST)
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5. "RE: formerly labrat's wife- it's been a while - there t"
In response to message #4
 
   Oracle,
I have followed your story. I am so moved by your dedication and love for your wife. It is inspiring. She surely knows that she is the luckiest woman on earth. I have become educated thru this journey- but nowhere near what you know. And some of what I have learned, I would not want to trade, because it has made me a much better person.

I do believe that it is the "medication" that has degenerated my husband's quality of life.Since the tumor has not grown, and in fact, showed some improvement twice, it is not his canser that has caused his physical problems. His first onclolgist was not acceptable to me. Unfortunately, there few choices, even in a city as large as we live near. Neurooncology is a highly specialized field, and we were assured we had the 'top' guy. But he predicted gloom and doom from the start, was against anything experimental, and relied solely on Decadron to treat everything. though decadron helps enormously when you need it, the dose and length of time you are on it, is very relevant to long term quality of life. I had no idea of this at the time, and I believe that this doctor didn't feel my husband would survive past 6 months, so it din't really matter what dose was being given. He dosed him at 16 mg for 7 months, a dose that took away his ability to walk, made him eat incessantly, drove him into paranoid rages, and much more. I beseech anyone who is taking Decadron to question and question their doctor and make sure the dose is as low as can be tolerated. My husband was operating normally last February. We are now fighting 2 things, keeping his brain cancer in remission, but also rehabilitating him back from invalidism,caused by steroid poisoning, something no one warned us about- which is very hard for a man who was snowboarding not long ago.

Though, I don't think the DCA is responsible for his muscle degeneration, I haven't ruled it out completely as possibly having some effect on him physically. He has been on so many medications since this began, it is so hard to tell what is what. But I do know that many cancer patients, not on DCA also complain of numbness in the hands and feet. Chemo can also cause this and I believe my husband complained of it before DCA.

For those worried about DcA and chemo- my husband took DCA and Temodal (100mg daily)for 10 months. He also took DCA with CCNU for 1 and 1/2 months- february to april. This was the time that he experienced great physical weakness, but his MRI also came back showing some tumor reduction.

He is now on DCA only, no chemo. He is also taking 4mg decadron, heparin for DVT, and Dilantin.

Like Lien, we are stepping up his physio, now that he is up and around again. He is pretty determined now- He has many balance issues- something that came after DCA but may be due to other meds- long term chemo, decadron- who knows? We too, will try to rehabilitate. I'm praying he can walk thru the lilacs this spring- but I'll be happy just to push him - Somehope


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crono5
Member since Aug-2-07
136 posts
Apr-19-08, 10:51 AM (PST)
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9. "RE: formerly labrat's wife- it's been a while - there t"
In response to message #5
 
Here’s a story of **** sister from Poland. Just after 8 days of following new protocol the result just started to pop up. Sister which was unable to walk, - she was laying all day, unable to speak, all day asleep - remarkably with some help was able to stand up and walk. After few weeks things was getting better and better. She now can walk. But form the beginning. She’s sister was diagnosed with stage II brain tumor – according to test on June 2007, but since then the tumor had grown. The tumor is located mostly over left side of brain. Before biopsy in June there was some radiation given . She had received standard 5 day cycle chemo treatment – Temodal in dosage of 350mg in combination with radiotherapy. She doesn’t wanted to wait for results of chemo treatment. So she started giving NaDCA along with chemo treatment. The results was so amazing, that folks of her who had come by to se how **** sister was downing was astound. Even the oncologist of **** sister didn’t believed that she will be alive after the end of that 5 day cycle of chemo. I think just like the Medicor Cancer Centers was informing back in August and September 2007 - that NaDCA had increased effeteness of that standard chemo treatment. Next from 20 of February another chemo cycle had started. Around of 19 of February the condition of sister was so good that she had decided to went back to her home. Just imagine - 20 days earlier she looked like she was passing away. The pH levels are stable, around 8 all the time. She is in 100% conscious, little trouble with remembering things. But nothing big. She is receiving 10 tabs of 25mg B1 vitamine. The dosage of NaDCA is 10mg/kg. All the time was the same. The supplementation & drugs: Encorton 2 x 5 mg, Depakine 2 x 500 mg, Glicerol 3 x 3 spoons. Omega 3 tabs. While on Temodal cycle along with Encorton she’s receiving 2x3 dexamethason tabs. Later the Glicerol was changed with Mannitol 2 x 100mg. The third cycle of Temodal is underway.
**** sister, has had major side effects. Finger numbness, but when she took some B1 (around of 5 or 6 25mg each) the numbness had disappeared. She has had some diet (Dr.budwig, alkaline food, no sugar, ketogenic diet) Soon (May) - some CT scans will be made.

http://apoptoza.info
http://nadzieja-glejak.pun.pl
http://glejak.pl/forum


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LORENAPEFE
Member since Feb-29-08
9 posts
Apr-21-08, 12:48 PM (PST)
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10. "RE: formerly labrat's wife- it's been a while - there t"
In response to message #9
 
   Hi everybody,

My father has been in hospital for around 3 months, we have had many complications after the second surgery for removing the tumor, and all this time we have been fighting againstall these complications but not against the glioblastoma. The tumor is growing very fast and doctors recomend us to bring him home to die. They don´t even want to give him chemo.

During this time at the hospital he has taken DCA twice.

The first time he took it for around 2 weeks, 12mg/kg/day with about 8 tablets of B1 and a lot of tea. He started feeling very bad, he had seizures and doctors saw that his brain was swollen. After that we knew about the warning of Brain cancer patients with DCA and caffeine protocol, so we gave up with DCA for about 3 weeks.

Two weeks ago we started again with a very low dossis to see if he acepted it right. We gave him 6,5mg/kg/day with B1 and no caffeine at all.

Now at home I would like to give him 10mg/kg/day DCA, a very good diet (as he is eating a lot of cakes and sugar stuff(, B1 vitamins, some more complements (if you could advice me some), and above all, if I can give him some coffee or tea and how much.

Please I need some advising about caffeine, diet and complements. This is our last chance.

Thank you very much in advance

Lorena


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crono5
Member since Aug-2-07
136 posts
Apr-21-08, 01:44 PM (PST)
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11. "RE: formerly labrat's wife- it's been a while - there t"
In response to message #10
 
no carbs and sugar (they promotes tumor growth)
Check this out (diet):
http://health.groups.yahoo.com/group/glioblastoma/message/583
and this:

http://www.naturalnews.com/Report_acid_alkaline_pH_1.html

and this may by also interesting:
http://www.cancersalves.com/botanical_approaches/individual_herbs/boswellia.html
and this:

http://www.naturheilpraxis-hollmann.de/Boswellia.htm
(use babelfish)

do not use coffee (it increases risk of seizures and it is acidic ) instead use black tea.
you could try some Alpha-linolenic acid and MMS.

http://apoptoza.info
http://nadzieja-glejak.pun.pl
http://glejak.pl/forum


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crono5
Member since Aug-2-07
136 posts
Apr-21-08, 01:48 PM (PST)
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12. "RE: formerly labrat's wife- it's been a while - there t"
In response to message #11
 
>no carbs and sugar (they promotes tumor growth)
>Check this out (diet):
>http://health.groups.yahoo.com/group/glioblastoma/message/583
> and this:
>
>http://www.naturalnews.com/Report_acid_alkaline_pH_1.html
>
>and this may by also interesting:
>http://www.cancersalves.com/botanical_approaches/individual_herbs/boswellia.html
>and this:
>
>http://www.naturheilpraxis-hollmann.de/Boswellia.htm
>(use babelfish)
>
>do not use coffee (it increases risk of seizures and it is
>acidic ) instead use black tea.
>you could try some Alpha-linolenic acid and MMS.


sorry it is Alpha Lipoic Acid (ALA )not Alpha-linolenic.

http://apoptoza.info
http://nadzieja-glejak.pun.pl
http://glejak.pl/forum


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LORENAPEFE
Member since Feb-29-08
9 posts
Apr-22-08, 07:35 PM (PST)
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13. "RE: formerly labrat's wife- it's been a while - there t"
In response to message #12
 
   Hi Crono5,

Thank you for your help.

There is so many information to assimilate....I think that I would do something like this:

10mg/Kg/day in 3 dose with 6 pills of 300mg of B1
No sugar
A helthy diet to control de PH
I will buy ALA tomorrow. How much should I give him? I found out that something between 50mg and 500mg per day, but the renge is so wide...

Do you think that MMS and KetoCal are necessary.If yes, where can I buy them?, how much should he take?

I wouldn´t like to give him much tablets becaus he has to take Keppra,Fortecortin and some others every day and taking them is not easy.....

Best regards

Lorena


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crono5
Member since Aug-2-07
136 posts
Apr-23-08, 02:10 AM (PST)
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15. "RE: formerly labrat's wife- it's been a while - there t"
In response to message #13
 
this may be also useful:
http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=109&STORY=/www/story/08-27-2007/0004652123&EDATE=

http://www.musc.edu/pr/garlic.htm

MMS not really necessary but KetoCall would be useful, Dr.Budwig's diet is very similar to ketogenic diet.

http://apoptoza.info
http://nadzieja-glejak.pun.pl
http://glejak.pl/forum


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dimitriskadmin
Member since Mar-19-08
233 posts
Apr-23-08, 02:20 PM (PST)
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16. "RE: formerly labrat's wife- it's been a while - there t"
In response to message #15
 
   >MMS not really necessary but KetoCall would be useful,
>Dr.Budwig's diet is very similar to ketogenic diet.

I understand the reason for low sugar-carb diet, but I have seen people doing great on DCA while consuming a lot of sugar. I wonder if sugar helps apoptosis by increasing cell metabolism. If Jim or anyone else has a better advice on this issue, I would really like to know.


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JudyDowell
Member since Apr-6-08
56 posts
Jun-16-08, 11:28 PM (PST)
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20. "RE: formerly labrat's wife- it's been a while - there t"
In response to message #16
 
   Reguarding the sugar issue: I abused sugar all my life. I'm that skinny girl eating M&Ms all the time, or smarties, bulls eyes, you name it. When I shop, I head for the day old cakes and pies. I am obcessed with sweets, always have been, plus always have a coca-cola in hand. Since my diagnosis of Non-hogekins lymphoma stage 4e with bone marrow involvement, and the prognosis of 6 months to 18 months (that was Feb. 1, 2007) I did cut down on the sugar. I now only drink 2 to 4 coca-colas in the cans daily, Plus I drink water (alkaline PH 10 to try to balance it out) and purified water daily (about as much water as I drink of cokes a day, so if I drink 2 cans of coke, I will drink the equivalent of 2 cans of water). As for the sweets, I cut out the cakes, still doing the pies but leave most of the crust for the dog, and I am eating a lot less M&Ms and Smarties...etc. I cut down to about half or less. I started the DCA last month, and so far, so good. The year from Feb. 07 to Feb. 08, my lymphoma did NOT grow! There was some evidence in the CT scan that it was actually smaller, but it could have been scar tissue (the oncologist said), but the cancer had not grown. I also wasn't handeling paint thinners anymore, or acetone (even my nail polish remover was pure acetone, so I don't use it anymore) and I haven't been spraying fly sprays and bug killers like I used to. (I am so guilty of spraying bug killers and breathing the fumes before getting out of the room) so anyway, I am being cautious about the stuff they think causes the cancer. My energy has increased almost to the "Before symptoms" stage. I feel alive again! I have been putting out a container garden to control the PH in the food I am growing, Lots of veggies! I did cut out all meats in my diet, and yes, I used to eat a lot of steak! My favorite was nearly raw Beef Porterhouse steaks! Not just rare, but it may as well have been raw, as I barely heated the meat at all. Well, I stopped that, no meat for me since Feb. 07. and I can say I really don't know if that had anything to do with my cancer, but I figured it did. I feel better without eating meat, and listening to your body seems to be the key. If his head feels hot to the touch, try using an ice bag, I had to do that on my tumor sites for the first year. I also kept my bedroom down right cold all winter, spring, summer and fall trying to eliminate the night sweats, which it did help, but the DCA stopped my night sweats pretty fast! As I have said , if nothing else, the DCA has stopped all of my symptoms so far, and I keep forgetting to change my fentanyl patch (50mcg. pain patch) and that amazes me! So, the moral of the story is, I haven't given up my chocolate habit, and I still have a little of my sweets. I prefer to avoid the stress. I'm still smoking (I doubt I ever give up that nasty habit, been doing it for over 40 years) and the Dr. said my cancer isn't the type caused by smoking. Good luck, and remember, quality of life is really important to us sick folks, even tho quantity is greater still. Bless you all!
Judy

Judy


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crono5
Member since Aug-2-07
136 posts
Apr-27-08, 01:18 PM (PST)
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17. "RE: formerly labrat's wife- it's been a while - there t"
In response to message #15
 
here's some more info about alternative therapies on gliomas:
http://www.virtualtrials.com/pdf/williams2007.pdf

http://apoptoza.info
http://nadzieja-glejak.pun.pl
http://glejak.pl/forum


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sidelait
Member since Apr-21-08
21 posts
Apr-22-08, 09:16 PM (PST)
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14. "RE: formerly labrat's wife- it's been a while - there t"
In response to message #11
 
   >you could try some Alpha-linolenic acid and MMS.

sorry... what is MMS??!


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barb1
Member since Sep-28-07
1 posts
Apr-01-08, 05:31 AM (PST)
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6. "RE: formerly labrat's wife- it's been a while"
In response to message #0
 
   Somehope, are you aware that buydca.com has resumed selling DCA to people outside of the US now? It sounds like you are in Canada, so this could be a great cost saving for you.


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somehope
Member since Mar-30-08
11 posts
Apr-01-08, 07:08 PM (PST)
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7. "RE: formerly labrat's wife- it's been a while"
In response to message #6
 
   thanks Barb- that is another option


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adminadmin
Member since Feb-7-07
239 posts
Apr-02-08, 09:07 PM (PST)
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8. "RE: formerly labrat's wife- it's been a while"
In response to message #0
 
   Somehope,

I apologize for not responding sooner.
I am so very glad you posted all of this. I am saddened to hear that you felt like you could not post, but I respect that. I am grateful that you have given us this update and I am thrilled to hear the good news despite the challenges.

I hope you stay in touch and find comfort and help among the members here.
We are rooting for you all.

Heather, Forum Moderator


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candydog
Member since May-6-08
21 posts
Jun-14-08, 12:59 PM (PST)
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18. "RE: formerly labrat's wife- it's been a while"
In response to message #0
 
   It's good to have someone to refer to that also has a GBM. My husband suffers bifrontal GBM and every day he differs. I symptom watch like no tomorrow and panic at any downturns. At the moment he has significantly gone downhill just since yesterday. Off course I panicked and assumed tumour growth but also think swelling from tumour response to drugs?
So tonight I upped his dose of decadron just in case. He is on 10mg, 8 normally. I feel lost as I have no-one to ask questions of. Anyone I have contact with that has a GBM has a small tumour or has had all of it surgically removed. Therefore I have no-one to compare to.
My husband says he feels heat in his head where the tunour is situated. I take this as a good sign. He also has neuropathic pain (since radiation) and due to this he has DCA 5 days on, 2 days off.
As he is on Temodal now I was thinking off changing this to DCA non Temodal days and no DCA Temodal days. I would very much appreciate your advice if that's okay.


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adminadmin
Member since Feb-7-07
239 posts
Jun-16-08, 05:58 PM (PST)
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19. "RE: formerly labrat's wife- it's been a while"
In response to message #18
 
   I am not allowed to give any "advice" - other forum members may be able to help you out.

Heather
TheDCASite Forum Moderator


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somehope
Member since Mar-30-08
11 posts
Aug-27-08, 02:07 AM (PST)
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21. "RE: formerly labrat's wife- it's been a while"
In response to message #0
 
   Hi everyone. I send you all prayers and hopes of better days.

I am updating my husbands' condition to my last post. It's all good. forgive me for not reporting more often- many demands as you all can relate to. But I must offer hope. The clinical trials in Alberta wrap up in November and I know we all wait with baited breath. Because the clinical trials are testing DCA on Glio's, I feel from our experience, that the results will be favorable, since my husband's condition is exactly the model that they recruited. But we are just one.However My husband has taken the DCA with temodal. The trials , I believe are without. Whatever the trials reveal, there is so much research to be done on this drug. We don't know that DCA is responsible for my husband doing so well and outliving his prognosis, but my prayer is that it is the reason. After all, his tumor was growing prior to Dec 2006, and he was on the same chemo- temodal. The tumor has not grown when he was on temodal + DCA.

His last Mri results, 2 weeks ago showed actual tumor shrinkage. He is walking, precariously now, without a cane. He is engaged in daily activities and needs little assistance. These were my prayers. We have passed the 2 year point. I remember the first oncologist giving him a 25% chance of making it to 2 years IF the temodal worked- which it did not. He has had no tumor growth since Dec 2006. He has now had 3 MRI's that have "looked smaller" and all have shown no growth. His DCA dose remains around 10mg- 12 mg per kg body weight. He is usually 1 week on 2 weeks off, but I dose it to what he can tolerate. I take him off when his thoughts get a bit muddled, and he seems weaker. That is usually within 2 weeks.He is also on Heparin, 1mg Decadron, 400 mg Dilantin, and an experimental drug Corticorelin. He has been off Temodal since early 2008. No one knows what is working. But something is. So we keep it the same .

We all walk on eggshells with Cancer. We don't want to jinx it or make the Cancer gods mad at us. I actually am afraid to say, 'he's doing good'- that's usually when Cancer kicks you in the butt and laughs at you for being so cocky. But the hell with it- 2 years we've lived with this now. HE'S DOING GOOD!He was given 1 year at best! We know it's a ticking timebomb. But none of us know our fate. So have hope. And don't give up- we've had a hell of a year- but the last few months have been great. Hang in everyone.


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rtshinn
Member since Mar-7-07
137 posts
Aug-27-08, 04:38 PM (PST)
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23. "RE: formerly labrat's wife- it's been a while"
In response to message #21
 
   Great!

What's the Corticorelin for?


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somehope
Member since Mar-30-08
11 posts
Aug-27-08, 05:36 PM (PST)
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24. "RE: formerly labrat's wife- it's been a while"
In response to message #23
 
   Cortecorelin was given to bring him down from Decadron. Decadron is the only steroid that reduces brain swelling but at high doses and long term use, the effects can be devestating. Don't really know if the cortecorelin worked because my husband did not have much edema as the tumor reduced, and probably could have been weaned down regardless. My husnand is finally down to 1mg decadron.(the weaning process is long) Don't know if he needs the cortecorelin but don't know if he doesn't so I'm just not messing with it. Who knows what the combo is that's producing positive results.


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rtshinn
Member since Mar-7-07
137 posts
Aug-27-08, 07:57 PM (PST)
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25. "RE: formerly labrat's wife- it's been a while"
In response to message #24
 
   Ok, thanks.
So, the big deal is that DCA is the main ingredient attacking the cancer cells.


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chrisz
Member since Jul-13-07
98 posts
Aug-27-08, 09:12 PM (PST)
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26. "RE: formerly labrat's wife- it's been a while"
In response to message #23
 
   fantastic news and thanks for updating us.
You guys give us all hope.
we send our love and prayers to you guys.

and as far as the cancer gods go, i'm pretty tight with the Music Gods and they are tough bunch and they are keeping an eye out for everyone who's dealing with this disease.

big energy to all.

chrisz


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davidportia
Member since Jul-23-08
67 posts
Aug-28-08, 03:40 AM (PST)
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27. "RE: formerly labrat's wife- it's been a while"
In response to message #21
 
   This is really fantastic. I will let all the people share your great experience and raise hope for them.
Apreciated your update very much!
David


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aurora
Member since Feb-22-10
14 posts
Mar-27-10, 04:19 PM (PST)
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28. "RE: formerly labrat's wife- it's been a while"
In response to message #21
 
   This is really a great post! Thank you so much for sharing this with us, you give us some hope too, somehope.

What I learned are:

Low Dose Temodal (100mg) + DCA 10~12.5mg/kg/day (very few people can take high dose Temodal for 10 months)
Decadron long wean down period (almost one year)
Green tea 6~8 months
Budwig diet may help?

Wish all the best to you and your husband!

Thanks again, Aurora


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