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DCA Discussion Forum
cybernaut
Member since May-27-07
36 posts |
May-31-07, 09:15 PM (PST) |
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"Well I eventually started 2007-05-30"
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Yesterday I started using DCA in earnest. I thought I would report what I find weekly and, as I had some interesting symptomatic experiences already, I'd put those down now. Background ========== I have advanced colorectal which was diagnosed 4 years ago. I've had a wide variety of treatment surgery (good) RFA (good) chemotherapy with 7 different agents in different combos (Erbitux, Oxaliplatin, Irinotecan, MMC, Capecitabine, UFT, Raltitrexed - you have these everywhere just the names used vary by country somewhat) - all nasty - and synchronous chemo with radiotherapy (ERbitux) (good). I have blood tests most weeks and imaging in phase with chemo cycles between 4 & 8 weeks. I have been doing some original research into chemo related clotting in cancer patients using a TEG machine if anyone wants to know about that (really distinct correlation between Irinotecan and complete blockade of aspirin / clopidogrel management of platelet clotting. LMWH carries on working). After a couple of CRs I now have extensive mets in lung liver and abdomen. These are still managed by chemotherapy but there isn't going to be another CR. I have therefore modified my therapy to allow it when I don't have other things I want to do and which it would interfere with. Typically this means doing cytotoxic chemo every 4-5 weeks rather than every 3. Next imaging will tell how this is working (only medium I suspect). Why DCA? ======= Well, I've just had a holiday from cytotoxic chemo while we dealt with an endobronchial excursion with radiotherapy and Erbitux. I've only had 1 Raltitrexed / Irinotecan treatment in 3 months although I have had 7 Erbitux treatments. I had some work to do and I put off restarting. This felt pretty good till the last 10 days when I started to get signs my liver is active again. Earlier in the year I used MMC instead of Irinotecan and it cleaned my liver out very well. Clearly that holiday is over and I need to do another shot of it. You can only have 56mgs of MMC else your kidneys die and I've had 28 already so I was holding this in reserve in case I needed it again. There isn't an obvious substitute so when I've used up the next two shots thats it for the liver as Irinotecan is less effective with my liver mets. As the oncologists are rapidly going into “your going to die” mode I started to look for therapies to improve the odds that could be tried alongside my current chemo. I found DCA and also something called Kinedac (Epalrestat) a drug used in Japan for the management of diabetic neuropathy (which chemo kicks me into). Kinedac is an Aldose Reductase inhibitor and it has been shown that where Aldose Reductase (an enzyme) is inhibited a broad range of human colorectal tumours cells won’t grow in mice. Got to be worth trying too. Why now? ======= Turns out I am less adventurous than I thought and reluctant to start mixing cocktails of chemo with unknown effects. Even though I had supplies of both drugs enough for a 90 day trial I put off beginning. Then my liver blew up giving me pain, fatigue and brain fade. It was sufficiently severe I didn’t want to wait even till Friday when my next chemo is scheduled to treat it. So, in the “kill or cure” spirit I made up 10mg/kg DCA and chugged it through the day. Today 12.5mg/kg. No other supplements day 1 but 4gms Vit C day 2 and 100mg thiamine and 200mgms silymarin. Good results. ============ Day one it may have increased hepatic discomfort (which is presumably inflammation and swelling causing capsular pressure as well as colecystitis). But it also acted as a diuretic and I pissed about 1.5 kgs extra fluid away. Slightly fatigued, slight optical effects. Felt slightly improved by sleep-time – less sore less grumpy - but brain still addled. Day two woke feeling much better. Pain resolved almost completely, felt quite well and calm. Brain still not 100% but better than daytime TV… Dosed with 1gm Vit C every chug of DCA – mixed they taste weird. Fatigue increased. No optical effects, mood and comfort now normal. Brain not perfect but much much clearer. Analysis: I don’t know what is going on but subjectively its good. Reducing hepatic inflammation and enabling the fluid to drain off probably dealt with a lot of the pain and derived issues. Fixing my mood and my mind pays for all. Can’t say if its killing tumour cells – maybe my blood tests tomorrow will show something interesting. I’ll post them. I will have CT imaging next week to give a baseline for the next 6 weeks. I have Erbitux (big dose) Irinotecan / Raltitrexed tomorrow. I probably won’t do DCA again till Saturday. Easier to manage any issues by stopping drinking than by stopping an infusion. Hope its of interest. Kind regards - Ian
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Well I eventually started 2007-05-30 [View All],
cybernaut, 09:15 PM, May-31-07, (0)
- RE: Well I eventually started 2007-05-30,
gordon, May-31-07, 09:24 PM, (1)
- RE: Well I eventually started 2007-05-30,
Andre Warzecha, Jun-01-07, 08:23 AM, (4)
- RE: Well I eventually started 2007-05-30,
John A, Jun-01-07, 12:14 PM, (5)
- RE: Well I eventually started 2007-05-30,
Dave, Jun-01-07, 07:46 PM, (8)
- RE: Well I eventually started 2007-05-30,
cybernaut, Jun-01-07, 09:30 PM, (9)
- RE: Well I eventually started 2007-05-30,
cybernaut, Jun-02-07, 02:24 AM, (10)
- RE: Well I eventually started 2007-05-30,
Dave, Jun-02-07, 02:30 AM, (11)
- RE: Well I eventually started 2007-05-30,
cybernaut, Jun-02-07, 03:28 AM, (12)
- RE: Well I eventually started 2007-05-30,
Vern, Jun-06-07, 01:09 AM, (14)
- RE: Well I eventually started 2007-05-30,
cybernaut, Jun-11-07, 09:06 PM, (15)
- RE: Well I eventually started 2007-05-30,
cybernaut, Jun-11-07, 09:37 PM, (16)
- RE: Well I eventually started 2007-05-30,
Vern, Jun-12-07, 03:32 AM, (17)
- RE: Well I eventually started 2007-05-30,
cybernaut, Jun-12-07, 09:20 AM, (18)
- RE: Well I eventually started 2007-05-30,
cybernaut, Jun-13-07, 07:59 AM, (19)
- RE: Well I eventually started 2007-05-30,
cybernaut, Jun-15-07, 06:08 PM, (20)
- RE: Well I eventually started 2007-05-30,
cybernaut, Jun-15-07, 06:12 PM, (21)
- RE: - numbness issues - nano delivery,
oracle, Jun-15-07, 08:26 PM, (22)
- RE: - numbness issues - nano delivery,
cybernaut, Jun-15-07, 09:43 PM, (23)
- RE: - numbness issues - nano delivery,
DORI, Jun-19-07, 10:58 PM, (24)
- RE: - numbness issues - nano delivery,
cybernaut, Jun-20-07, 09:22 AM, (26)
- RE: - numbness issues - nano delivery,
cybernaut, Jun-20-07, 09:44 AM, (27)
- Imaging results - CT with contrast 26-06-2007,
cybernaut, Jun-26-07, 10:50 PM, (39)
- RE: Well I eventually started 2007-05-30,
cybernaut, Jun-20-07, 08:55 AM, (25)
- RE: Well I eventually started 2007-05-30,
prime3end, Jun-21-07, 04:32 PM, (28)
- RE: Well I eventually started 2007-05-30,
satx, Jun-21-07, 08:18 PM, (29)
- RE: Well I eventually started 2007-05-30,
cybernaut, Jun-22-07, 12:30 PM, (31)
- RE: Well I eventually started 2007-05-30,
Sandra
, Jun-22-07, 06:29 PM, (35)
- RE: Well I eventually started 2007-05-30,
satx, Jun-22-07, 08:34 PM, (36)
- RE: Well I eventually started 2007-05-30,
Dave, Jun-28-07, 04:40 PM, (40)
- RE: Well I eventually started 2007-05-30,
Sandra
, Jun-28-07, 06:29 PM, (41)
- RE: Well I eventually started 2007-05-30,
Dave, Jun-29-07, 04:13 AM, (42)
- RE: Well I eventually started 2007-05-30,
satx, Jun-29-07, 04:58 AM, (43)
- RE: Well I eventually started 2007-05-30,
Sandra
, Jun-29-07, 06:00 AM, (44)
- RE: Well I eventually started 2007-05-30,
Dave, Jun-29-07, 08:31 PM, (46)
- RE: Well I eventually started 2007-05-30,
Sandra
, Jun-29-07, 10:44 PM, (47)
- RE: Well I eventually started 2007-05-30,
cybernaut, Jun-29-07, 11:19 PM, (48)
- RE: Well I eventually started 2007-05-30,
cybernaut, Jun-29-07, 11:58 PM, (49)
- RE: Well I eventually started 2007-05-30,
DerekSmith, Jul-01-07, 09:59 AM, (50)
- Derek Smith totally right!!!!!,
SergioBrazil, Nov-20-09, 03:36 AM, (53)
- RE: Well I eventually started 2007-05-30,
crono5, Feb-02-09, 11:22 AM, (52)
- RE: Well I eventually started 2007-05-30,
Ian 1952, Aug-30-07, 03:45 PM, (51)
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cybernaut
Member since May-27-07
36 posts |
May-31-07, 09:43 PM (PST) |
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2. "RE: Well I eventually started 2007-05-30"
In response to message #1
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Hi Gordon What time zone you in? Here today is Thursday, tomorrow Friday, day after Saturday. DCA Wednesday / Thursday / Saturday. Friday hit the little boogers with 3 nasty chemotherapies which will make them very worried. I don't think they'll have time to develop resistance. But, anyway, I think it safer not to do DCA the day of the infusion in case there is an interaction. I'll test on Saturday when the chemotherapy titre is high but I can manage anything that goes wrong easily by stopping the DCA input. That works OK I'll think about doing DCA through the next chemo infusion. Kind regards - Ian |
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Andre Warzecha
Member since Mar-13-07
31 posts |
Jun-01-07, 08:23 AM (PST) |
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4. "RE: Well I eventually started 2007-05-30"
In response to message #0
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Ian... DCA is not only one option which you can use..Its clear that oncologist think that you´re going to die only because their drugs do not really work. Firstly,there are many clinical trials which you may tryMoreover,a clinical trial about nanocells starts this year in a few months,it was shown that these nanocells were quite effective in destroying cancer cells.You can use very very high doses packed in these small cells (small like viruses) and attack cancer cells i multiple points.Hodgking lymphoma started to shrung signifcantly.This trial starts in australia (for more,see my posted message on topics other than DCA) I hope that DCA will work in your case since in others this was not the case. all best André |
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cybernaut
Member since May-27-07
36 posts |
Jun-01-07, 06:59 PM (PST) |
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7. "RE: Well I eventually started 2007-05-30"
In response to message #4
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Hi Andre Thanks for the comment. I understand the issue with oncologists very well. I even had quite a big disagreement with mine this morning and I will be taking him before his ethics committee in the next couple of weeks as a consequence. Probably need a new oncologist after that but hey, if the man is useless to me then no loss. I appreciate the nanocell approach but I don't know there will be a trial in the UK - but now you mention it I'll check if its going multi-centre - some of them do. Hrrm, if its in Aus can you give me a pointer to that? I'll go look it up in other topics, if I can't find it I'll come back to you. I lived in Aus for 10 years in the 70s and I wouldn't mind coming back - maybe I could qualify for that trial. Sounds fun. As to DCA working, I can't yet know. I didn't expect anything when I started Wednesday. However there was a pronounced effect as reported yesterday. I'll post today's blood test results later - I'm a bit pooped after all day chemo. I'll probably do some DCA this evening then back to full load tomorrow. I'll give it the best shot. Kind regards - Ian |
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John A
Member since Mar-18-07
117 posts |
Jun-01-07, 12:14 PM (PST) |
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5. "RE: Well I eventually started 2007-05-30"
In response to message #0
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>Yesterday I started using DCA in earnest. I thought I would >report what I find weekly and, as I had some interesting >symptomatic experiences already, I'd put those down now. > >Background >========== >I have advanced colorectal which was diagnosed 4 years ago. >I've had a wide variety of treatment surgery (good) RFA >(good) chemotherapy with 7 different agents in different >combos (Erbitux, Oxaliplatin, Irinotecan, MMC, Capecitabine, >UFT, Raltitrexed - you have these everywhere just the names >used vary by country somewhat) - all nasty - and synchronous >chemo with radiotherapy (ERbitux) (good). > >I have blood tests most weeks and imaging in phase with >chemo cycles between 4 & 8 weeks. I have been doing some >original research into chemo related clotting in cancer >patients using a TEG machine if anyone wants to know about >that (really distinct correlation between Irinotecan and >complete blockade of aspirin / clopidogrel management of >platelet clotting. LMWH carries on working). > >After a couple of CRs I now have extensive mets in lung >liver and abdomen. These are still managed by chemotherapy >but there isn't going to be another CR. I have therefore >modified my therapy to allow it when I don't have other >things I want to do and which it would interfere with. >Typically this means doing cytotoxic chemo every 4-5 weeks >rather than every 3. Next imaging will tell how this is >working (only medium I suspect). > >Why DCA? >======= >Well, I've just had a holiday from cytotoxic chemo while we >dealt with an endobronchial excursion with radiotherapy and >Erbitux. I've only had 1 Raltitrexed / Irinotecan treatment >in 3 months although I have had 7 Erbitux treatments. I had >some work to do and I put off restarting. This felt pretty >good till the last 10 days when I started to get signs my >liver is active again. > >Earlier in the year I used MMC instead of Irinotecan and it >cleaned my liver out very well. Clearly that holiday is >over and I need to do another shot of it. You can only have >56mgs of MMC else your kidneys die and I've had 28 already >so I was holding this in reserve in case I needed it again. >There isn't an obvious substitute so when I've used up the >next two shots thats it for the liver as Irinotecan is less >effective with my liver mets. > >As the oncologists are rapidly going into “your going to >die” mode I started to look for therapies to improve the >odds that could be tried alongside my current chemo. I >found DCA and also something called Kinedac (Epalrestat) a >drug used in Japan for the management of diabetic neuropathy >(which chemo kicks me into). Kinedac is an Aldose Reductase >inhibitor and it has been shown that where Aldose Reductase >(an enzyme) is inhibited a broad range of human colorectal >tumours cells won’t grow in mice. Got to be worth trying >too. > >Why now? >======= >Turns out I am less adventurous than I thought and reluctant >to start mixing cocktails of chemo with unknown effects. >Even though I had supplies of both drugs enough for a 90 day >trial I put off beginning. Then my liver blew up giving me >pain, fatigue and brain fade. It was sufficiently severe I >didn’t want to wait even till Friday when my next chemo is >scheduled to treat it. > >So, in the “kill or cure” spirit I made up 10mg/kg DCA and >chugged it through the day. Today 12.5mg/kg. No other >supplements day 1 but 4gms Vit C day 2 and 100mg thiamine >and 200mgms silymarin. > >Good results. >============ >Day one it may have increased hepatic discomfort (which is >presumably inflammation and swelling causing capsular >pressure as well as colecystitis). But it also acted as a >diuretic and I pissed about 1.5 kgs extra fluid away. >Slightly fatigued, slight optical effects. Felt slightly >improved by sleep-time – less sore less grumpy - but brain >still addled. > >Day two woke feeling much better. Pain resolved almost >completely, felt quite well and calm. Brain still not 100% >but better than daytime TV… Dosed with 1gm Vit C every chug >of DCA – mixed they taste weird. Fatigue increased. No >optical effects, mood and comfort now normal. Brain not >perfect but much much clearer. > >Analysis: I don’t know what is going on but subjectively its >good. Reducing hepatic inflammation and enabling the fluid >to drain off probably dealt with a lot of the pain and >derived issues. Fixing my mood and my mind pays for all. > >Can’t say if its killing tumour cells – maybe my blood tests >tomorrow will show something interesting. I’ll post them. >I will have CT imaging next week to give a baseline for the >next 6 weeks. > >I have Erbitux (big dose) Irinotecan / Raltitrexed tomorrow. > I probably won’t do DCA again till Saturday. Easier to >manage any issues by stopping drinking than by stopping an >infusion. > >Hope its of interest. > >Kind regards - Ian Hello Ian, I see that you are a great fighter and survivor and I feel somewhat humbled to be making suggestions but if you wish to consider them and explore the rationale I would be pleased to be of assistance. I would ask you to consider using a Proton Pump Inhibitor such as Omeprazole 40mg per day to increase the effectiveness of your Chemotherapy agents including DCA The following three references will explain the rationale for this approach. 1. "Effect of Proton Pump Inhibitor Pretreatment on Resistance of Solid Tumors to Cytotoxic Drugs" Francesca Luciani et al Journal of the National Cancer Institute Vol 96. No 22 November 17 2004. 2. "Selective Induction of Apoptosis with Proton Pump Inhibitor in Gastric Cancer Cells" Marie et al. Clinical Cancer Research. Vol 10 8687-8696 December 15 2004. 3." overcoming Physiologic Barriers to Cancer Treatment by Molecularly Targeting the Tumor Microenvironment " Rob Cairns et al. Molecular Cancer Research 4:61-70 (2006) Reference 3 also includes additional approaches for consideration. I will try and email you the papers. Best Regards
John A. Research Chemist John A |
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cybernaut
Member since May-27-07
36 posts |
Jun-01-07, 06:21 PM (PST) |
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6. "RE: Well I eventually started 2007-05-30"
In response to message #5
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Hi John Thanks for the offer of the papers, I look forward to them. BTW I'd like to make a comment to administrators / mods. I must be being stupid but I don't see any easy way to upload files or include pictures in messages. This makes it more difficult to share data with each other. F'rinstance I've got here today's blood test results and next week I'll have some fresh CT scans. To really document a progress it would be nice to make it easy to put this data in the record when fresh. If fixing this means adjusting my stupidity level then please do so. Otherwise, could we have an easy way to attach data please? Kind regards - Ian |
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Dave
Member since Mar-5-07
47 posts |
Jun-01-07, 07:46 PM (PST) |
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8. "RE: Well I eventually started 2007-05-30"
In response to message #0
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Ian: As I mentioned in an earlier response to one of your posts I too am Stage 4 colon cancer patient. However, my treatment to date has been surgical to remove the primary tumor and folfox / avastin for the mets in my liver. My last CT scan was in April and showed shrinkage of met tumors in the liver. Next CT scan is June 5th - so i will know more then. I am also taking curcumim daily - I have read a lot of positive research papers regarding this lately. Apparently it fights cancer on many levels and in one reading it was compared to a "safe" avastin. You obviously have significant experience and research knowledge. I was wondering if you have any thoughts / experiences regarding curcumin (and now nanocurcumin !) or other life extension protocols as described by life extension.org or grouppe kurosawwa. Recently there has alson been some encouraging annoucements regarding Hycamp which more effectively delivers irrotecan (camptostar) to tumor sites. Might be something to check out. I wish you the best with your DCA trial and will watch for your posts regarding updates of your progress. |
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cybernaut
Member since May-27-07
36 posts |
Jun-01-07, 09:30 PM (PST) |
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9. "RE: Well I eventually started 2007-05-30"
In response to message #8
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Hi Dave You should make progress on FolFox + Avastin. Its an effective combo although Oxaliplatin has bad blood vessel and neuropathic side-effects. I look forward to hearing of your next scan results. BTW, do they give Oxali with a premed to suppress the neuropathic effects these days? That was introduced just before I moved on and made a big difference. I don't know much about alternative / herbal stuff. I've stuck to the pharma driven chemo until recently as it was generally more accessible to me being a heavy techie able to read research papers. I will look into Curcurmin over the next few days as I'll not be going far from the laptop till the chemo settles down. However my first google produced this link http://www.holfordwatch.info/2007/04/whats-excitement-about-turmeric.html which seems down right abusive about it (or one of its protagonists). I'll look again tomorrow and see what I can see. Now doesn't HyCamp look like fun? Thats an improvement worth paying for. I was aware of the use of Hyaluronic Acid in combo with chemos but didn't know of this trial report so thank you. I guess it should be possible to get an MHRA import license for this even if it isn't EMEA approved. I'll research this further: if it still looks good then its just 1. confirm the company can supply 2. get drug import company on the case 3. get 2 letters from quack prepared to administer it (MHRA / drug import company) 4. hold up arm. A simple sequence usually taking 4 months to organise. *If* you can find a quack with the balls to be first out of the blocks. Kind regards - Ian |
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cybernaut
Member since May-27-07
36 posts |
Jun-02-07, 02:24 AM (PST) |
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10. "RE: Well I eventually started 2007-05-30"
In response to message #9
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I eventually did do a full 1gm of DCA in the evening following chemo. No immediate adverse effects other than slightly greater nausea than usual. It may be that I don't feel as stressed as usual after this chemo combo and I do have better mood. I can never sleep the night after unless I really drug up but I do feel more alert than usual - not speedy but calm and relatively clear headed. All interesting - I guess thats the Phase 1 multi-agent trial rolling. I don't plan to look for DLTs but I'll let you know if anything falls off by morning... Kind regards - Ian |
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Vern
Member since May-30-07
17 posts |
Jun-06-07, 01:09 AM (PST) |
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14. "RE: Well I eventually started 2007-05-30"
In response to message #12
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Ian, can you tell me how you are using DCA during the period you are on chemo? Are there others reading this who are using DCA while on chemo or in between chemo? If I interpret Derek's post correctly, is there a possibility that a CT scan may not show the true state of tumors after DCA? Thanks to everyone for their honest and factual input. Vern |
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cybernaut
Member since May-27-07
36 posts |
Jun-11-07, 09:06 PM (PST) |
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15. "RE: Well I eventually started 2007-05-30"
In response to message #14
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Hi Vern I use DCA by dissolving my daily dose in a bottle of San Pellegrino mineral water (I just like the stuff) and take it in 4 shots through the waking period. I take 1gm Vit C with every dose. So I drop an effervescent Vit C tab into a tumbler and add ~ 250mls NaDCA / mineral water mix. It fizzes well and is sharper in flavour than Vit C in mineral water. I am working on 12.5 mg/kg. I find 5 days at a time is enough then I have 24-48 hours off DCA to let things settle. If I am having chemo or imaging contrast agent I don't take DCA till the IV stuff is in - then I can control dosing collisions somewhat. Can't comment on Derek's post - I need to find / reread it first. My CT on Monday last week followed DCA and chemo in the preceeding 5 days. The CT scan looked ordinary to me. The chap who does the reporting commented when prompted that there might be evidence of unexpected necrosis as some of the active disease areas in the liver seemed more attenuated than he might expect. Before anyone gets excited he is a nice chap who likes to please and this is an analog observation. Lets wait for the next imaging when there should be shape change before celebrating. There is however no doubt the CT scan confirmed some of my earlier reported clinical observations - liver not enlarged, cholecystitis calmed down. Copies of report, blood tests etc at www.cybersolver.com/medical Right click to download / save then email me via this site for password as they are encrypted. I have some flack with my oncologists and until they are back in their box I need to make sure only legit users of this site have access. Kind regards - Ian |
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cybernaut
Member since May-27-07
36 posts |
Jun-11-07, 09:37 PM (PST) |
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16. "RE: Well I eventually started 2007-05-30"
In response to message #15
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Sorry to have been quiet for so long. The chemo mix I had on 1st June is quite nasty and destroys much motivation. I also needed to clean up my reporting spreadsheet for bloods etc and decided to wait for my CT scan on 4th June to see if anything interesting showed up. I didn't take DCA on 4th June or today. Otherwise I built up quickly to 12.5 mg/kg and kept at that level. I find the experience changes over time. DCA alters my mood positively but that actually morphed into a state of aggression after 10 days. Perfectly manageable socially but definite sense of short fuse and frustration: this rapidly improves once dosing is deferred. I also found soreness of eyeball. Increased gut disturbance in association with chemo (*severe* constipation). DCA seems to have modified my chemo experience otherwise for the better: the dreadful depression / low energy I normally get with headache / lassitude / weakness has been greatly improved. The blood tests show some evidence of this - *platelet levels are much improved*. If anybody has any ideas what that might mean do speak up. The other subjective sensations are not easily interpretable. I do have greater secretion from the lung and some inflammation in hilar regions. I don't think I am taking as much prednisolone to suppress that as usual. I have some discomfort occasionally in other nodes. The liver is generally comfortable and there are no significant symptoms of liver disease. Oh yes, I also have had a breakout of gum disease in the upper palate in the last 48 hours. It seems to yield to vicious water-picking with mouthwash in the (warm) water. Might be coincidence but could be evidence of reduced peripheral blood supply? No change in hypertension or heart rate. Some beneficial effect on blood glucose. Weight change due to chemo as expected. Slight extra nausea (normally don't have this) but nothing a chemo patient can't manage. Appetite reasonable given the chemo. If I think of anything else I'll add it later. Reports www.cybersolver.com/medical Kind regards - Ian |
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Vern
Member since May-30-07
17 posts |
Jun-12-07, 03:32 AM (PST) |
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17. "RE: Well I eventually started 2007-05-30"
In response to message #15
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Hi Ian Thanks for your input re; taking DCA while on chemo. I posted the message below about my wife's numbness in her feet, but I have another question. I am assuming she should stay off DCA until the numbness is resolved but could (should) she take it sparodically, say every few days or so? For a week before she went back on chemo she was feeling pretty lousy and we both think that was due to her cancer and her enlarged liver due to tumors. She went back on chemo a week ago today and she felt really lousy until Friday afternoon when it was just like a "feel better" switch was turned on. She still feels better than she has for a couple of weeks. By the way, I took her to a drop in clinic 2 weeks ago because she wasn't feeling well and she thought she may have had a urinary tract problem. I told the DR. she was taking an experimental drug called DCA and he virtually waved his finger at me while giving me a lecture for self prescribing from the internet. I previously posted about a message about my wife who has stage 4 colon cancer. She was off chemo for 4 months and during the last 3 weeks during the period she was off chemo, she took DCA @ 10mg/kg. Unfortuneately the CT scan she had 2 weeks ago today showed that her tumors were growing and spreading. She is now back on chemo as of a week ago today. She complains about the numbness in her fingers and feet but especially her feet. Does anyone have any suggestions about anything that might her her with this or does she just have to wait until the numbness goes away on it's own? She has been off DCA for 3 weeks. Thank you (and others) for your help. Vern
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cybernaut
Member since May-27-07
36 posts |
Jun-12-07, 09:20 AM (PST) |
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18. "RE: Well I eventually started 2007-05-30"
In response to message #17
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Vern Your wife's state seems very familiar to me and I am sorry to hear of it. Numbness (usually peripheral neuropathy (PN)) is caused by many chemos (oxaliplatin being classic) but it is also re-activated / exacerbated by others which don't seem to cause it as prime agents. I have the scars (sorry loss of sensation) from Oxali. Irinotecan in combo can re-activate this and certainly induces a related clumsiness. I have only had slight feelings of coarseness in sensitivity of hands from DCA use so far. As if the finger skin were thicker - which it may be as Erbitux causes weird effects and DCA may have modified these slightly. But chemo can act even more distantly. I recently found that Erbitux / MMC / Raltitrexed kicked off classic diabetic neuropathic symptoms in my feet leading to loss of gait control and foot bruising. I had to take to wearing air cushion trainers else ulcers / amputation would have been on the horizon. Fortunately it didn't last too long as I only had 2 shots of MMC and it remitted when that left the system. I did investigate this and there are drugs targetting diabetic neuropathy in development. One at least has been licensed in Japan for 14 years. They all seem to target an enzyme called Aldose Reductase and Inhibit (ARI) it. The Japanese drug is called Kinedac or Epalrestat. I obtained some Kinedac as a recent paper suggests that effective ARI also suppresses growth of colorectal xeno-grafts in mice. I haven't got around to trying it yet - its on my agenda for next month after my 1 month observation of DCA. Whether it will help with drug-induced PN requires a more careful reading of the papers. I'm afraid I can't offer any guidance yet even as to combinatorial safety. I will try it and comment in due course (I hope). As to whether your wife should use DCA intermittently whilst PN is present is tricky. It isn't desirable to exacerbate even reversable neuropathies and generally I would seek to avoid it. Whether the condition is caused wholly by DCA or is a permanent reminder of earlier chemo made obvious again by DCA is a consideration. How much loss of function is there? Would life be good if it became permanent but the cancer were inhibited for a while? I was under the impression that recovery from DCA induced PN was fairly rapid - I think others have experienced it and commented on the dynamics of recovery. If your wife's PN isn't following that model I'd question why. I am sorry to say I have to go - I am dragged off to the vet to collect the body of one of our pussy cats who succumbed to cat SARS (FCoV => FIP) for decent burial. Some duties exceed all others. If I can think of anything helpful to add, before you have to choose, I'll come back to you. Kind regards - Ian |
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cybernaut
Member since May-27-07
36 posts |
Jun-13-07, 07:59 AM (PST) |
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19. "RE: Well I eventually started 2007-05-30"
In response to message #18
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Just a couple more observations. I am at the end of 48 hours off DCA (as mentioned above) to minimise development of any problems and some things changed: 1. constipation not so bad, 2. eyeballs stopped scratching, 3. continued development of loss of balance (resurrection of old Oxaliplatin neuropathy relating to lower leg reflex arcs). 4. increase in lethargy but also sleeplessness 5. increase in hilar inflammatory state requiring more prednisolone to fix 6. on reflection there is some evidence of restriction of peripheral blood supply other than gum disease, cold feet in particular 7. Oh yes, some of the imbalance mentioned in 3. feels like it might have a CNS component - its worse in some ways than previously and staggers take longer to recover Kind regards - Ian |
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oracle
Member since Mar-17-07
417 posts |
Jun-15-07, 08:26 PM (PST) |
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22. "RE: - numbness issues - nano delivery"
In response to message #21
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Hey I wanted to say our naturopath specifically told us it was not caused by DCA but most likely from the chemo and it attacking the nerves. My wife took his advice on taking a minimum of 4 - 8 grams a day of L_Glutamine during chemo treaments and it worked super fast for her. I also do not think stopping DCA is a good idea and it has caused my wife no issues at all during her treatments. We were blaming DCA for things that were chemo and desease related. I wanted to tell you my wife started a new nano treament called abraxane with avastin and carboplatin in a low dose weekly regimen which has reported a 50+% response in Lung Cancer and an 85% impact on controling the desease due to it being a better delivery method to the cancer cell. God Bless Oracle Oracle |
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cybernaut
Member since May-27-07
36 posts |
Jun-15-07, 09:43 PM (PST) |
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23. "RE: - numbness issues - nano delivery"
In response to message #22
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Hi Oracle Are you referring to the balance type symptoms? If so I really think your naturopath is right that the original damage is caused by chemo. I'll look into the L-glutamine and thanks for the tip. Its kind of hard to project effects and symptoms from one to the other of us as we are all doing our own thing on dosing / other chemos and we are each somewhat unique in our responses. I definitely have some CNS activity with DCA including mood changes (mostly good) and intellectual energy (mostly good). But I also have quite a strong internal buzz or twitch that builds up. Its a bit like mild tinnitus spread throughout the body. It slightly affects proprioception and clumsiness. Its hard to dissect out from the nasty effects of my chemo but the little rest I just had from DCA eliminated it: I've now restarted and I'll let you know if it builds up again. BTW it does exacerbate tinnitus slightly for me. Imaging in 14 days. We'll see what we shall see. I feel very well today in sharp contrast to 2+ weeks ago when hemlock would have been an acceptable alternative to DCA. I do mean well: no obvious disease symptoms and the chemo side-effects now purged. Plenty of bounce and even contemplated the Times crossword without flinching this morning. Kind regards - Ian |
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DORI
Member since Jun-19-07
4 posts |
Jun-19-07, 10:58 PM (PST) |
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24. "RE: - numbness issues - nano delivery"
In response to message #23
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Vern, Ian & Dave Guess what? I also was told that I "had" colo-rectal with lymphnode involvement - so I did the chemo and am now trying the homeopathic approach. But to address Vern's wifes' feet issues - On the AnnieAppleseed.com web page it was stated that taking Hops and/or soaking your feet/hands in hops with the blossoms would help eleviate the numbness. I just started taking the hops and will let you know... it seems the balls/pads of me feet are better. Also, the doctors said that it should go away in six months after stopping chemo... it's been eight months since my last chemo and I still have it so it may be permanent. I am taking 10,000 mg of Vit C every day, along with Cayenne, Capsibiol-T, N-Tense (a combination of Graviola w/7 other rainforest plants), Graviola, Pomegramate seed oil, Essiac tea, lots of flax seed, and other things. It seems to be working as the CEA is dropping. Just had a blood test last night so that should be the answer to how low it is dropping. Take Care, Dori |
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cybernaut
Member since May-27-07
36 posts |
Jun-20-07, 09:22 AM (PST) |
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26. "RE: - numbness issues - nano delivery"
In response to message #24
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Hi Dori Were you on Xeloda (Capecitabine)? This commonly causes horrid lesions and pain in hands & feet (HFS or PPS) although its not alone. If it was Xeloda it turns out there is a genetic predisposition to side-effects based on levels of an enzyme DPD in the body. No DPD (rare) and Xeloda poisons you, high DPD (level is somewhat variable based on transcription efficiency) and the side-effects including HFS become more damaging. I had HFS as a Dose Limiting Toxicity (DLT) and this meant my dosing was suspended with benign effects for my tumours. I eventually discoverd this DPD issue and found 3 other chemos which work well and bypass the problem: UFT (Uftoral with Tegafur) & the Japanese drug S1 - both of which work similarly to Xeloda but have a defence against the DPD issue - and Raltitrexed which works in a different way to target the same enzyme sub-system (thymidylate synthase). I tried UFT and Raltitrexed: I found Raltitrexed works best and causes no HFS pain. If your foot problem is HFS then it can be very bad. You can get open or buried ulcers. I had extensive blistering and buried ulcers on the ball of the foot. The blisters were manageable (I ignored the quacks and drained them) but the buried ulcers had to grow out. They were like deep blisters but eventually migrated to the surface so I guess they must have been in the base layer of skin. This took 4-6 months as I remember and the feet recovered rapidly once they emerged. I have heard of others who took longer to recover than that so don't give up hope. Kind regards - Ian |
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cybernaut
Member since May-27-07
36 posts |
Jun-20-07, 09:44 AM (PST) |
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27. "RE: - numbness issues - nano delivery"
In response to message #26
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Dori I can't have been very awake when I read your note about feet. For some reason I picked up pain rather than numbness: sorry about that. I found numbness was caused by Oxaliplatin. I didn't find it went away but I did find one accomodates to it fairly well. After a year most of my hand and foot insensitivity and clumsiness didn't affect most of what I wanted to do. However it still makes me occasionally cross when I drop a small screw or have trouble walking across a rough field. I'll be very interested to hear how the hop therapy works. Kind regards - Ian |
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cybernaut
Member since May-27-07
36 posts |
Jun-26-07, 10:50 PM (PST) |
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39. "Imaging results - CT with contrast 26-06-2007"
In response to message #23
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Brief note tonight. 4 week trial of DCA alongside heavy chemo made no substantive difference to the expected course of the disease. I had pronounced subjective effects with it. Indeed, even though I now know the effect is marginal at best for me, I have taken some this evening to quiesce liver discomfort and its doing its stuff. However the evidence is that it doesn't seem to be killing many of my tumour cells: no magic bullet for my particular colorectal mutation. I'll write up the protocol, observations and results, Saturday probably, and upload with comparative images and the latest report. Must be time to move on to TetraThioMolybdate. Kind regards - Ian |
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cybernaut
Member since May-27-07
36 posts |
Jun-20-07, 08:55 AM (PST) |
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25. "RE: Well I eventually started 2007-05-30"
In response to message #11
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Hrrm, well I just read the nanocurcumin paper and that seems rather good. Almost inspired me to get out the chemistry set and whip some up. Sadly its 40+ years since I was last allowed loose in a chemy lab so maybe not... Bioavailability seems to be the real issue with unpackaged curcumin and none of my mets are in the intestines so I guess I'll have to eat curries because I like them rather than they are good for me. Thanks for these, I'll have a further browse later. Kind regards - Ian
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prime3end
Member since Mar-20-07
18 posts |
Jun-21-07, 04:32 PM (PST) |
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28. "RE: Well I eventually started 2007-05-30"
In response to message #25
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Curcumin is good stuff, manages to inhibit some telomerase, is highly effective against familial colon polyps, in a small human study, small doses of curcumin and quercetin, in a 6 month study, managed to eliminate 60% of colon polyps in patients with familial colon polyps, the remaining polyps were reduced in size by an average of 50% !!!! These were very sick people who had been through multiple surgeries for polyps and colon cancer. Colon polyps express telomerase, they are just waiting for the genetic blip that sets them off. Curcumin is available in pure form from www.lef.org and other places but thats where I get mine. They include some bioprene (piperine from black pepper) to increase absorption a little. In India, they are looking at a curcumin hard candy with the hope it will increase absorption and spread a large dose throughout the day.
Curcumim's activity is greatly restricted to the gut, and I think nano-curcumin will overcome that limitation, and allow it to be distributed throughout the body. |
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satx
Member since May-9-07
232 posts |
Jun-21-07, 08:18 PM (PST) |
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29. "RE: Well I eventually started 2007-05-30"
In response to message #28
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Cheapest source of curcumin and turmeric is bulk in packets from Asian Indian or Pakistani grocery store. Same with powders of ginger, cinnamon, fenugreek. Capsaicin (the phyto-chemical that makes chilis and peppers sting) is anti-inflammatory, analgesic, anti-fungal, orally or topically. Orally is only practical in capsules, unless your mouth has a very high pain threshold, and best in the middle of meal or blender drink, not on an empty stomach. |
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cybernaut
Member since May-27-07
36 posts |
Jun-22-07, 12:30 PM (PST) |
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31. "RE: Well I eventually started 2007-05-30"
In response to message #30
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The issue with both Curcumin and Quercetin appears to be bioavailability via ingestion. The following seems helpful: The serum quercetin concentrations required for anti-cancer activity (upwards of 10 microM, see below) are much higher than those achieved with oral doses in human studies. Since a 100 mg single dose was found to create a serum concentration of 0.8 microM quercetin,11 one could extrapolate that a 1500 mg daily dose might attain a 10 microM level. The relative long half-life of quercetin may result in even higher serum concentrations. Data from an animal study cited above suggest that concentrations of quercetin above 10 microM are attainable with oral doses.6 A single intravenous dose in humans of 100 mg led to a serum quercetin concentration of 12 microM (4.1 mcg/ml).12 Quercetin maybe can be pumped up to an active systemic level but curcumin can't easily. I am unsure that there are convincing demonstrations of in vivo curative properties yet - although I expect to get dumped on from a great height for saying so! I don't think that means we shouldn't be devising good experiments and trying them out of course. I must say that even though I have had largely benign subjective effects from using DCA I really doubt that any single simple chemo is going to cure any cancer. Multiple simultaneous agents working synergistically together can rock the brute back and maybe control it - those lucky enough to have testicular of course can get away with it. For single agent I think targetted biochemicals interfering with specific cell functions have a chance as Gleevec has shown in GIST for instance. But my money is on an engineered retrovirus that takes up permanent residence (like herpes) and busts out of hibernation to kill tumour cells whenever there is a resurgence of disease. Interestingly there was a recent paper showing how a Herpes simplex 2 virus, engineered to need a tumour cell with activated Ras pathways for reproduction, was succesful in clearing human ovarian cancer xenografts out of mice. The only problem with that is neither big pharma or the regulatory authorities are going to like people wandering around with biologically active material in them that might propogate or even mutate and propogate. Personally I wouldn't object to catching a cold that would cure my cancer but I guess one can see their point. Anyway, imaging Tuesday. I'll post the results as soon as I have them although its possible that might be the end of the week as I may be out of the UK Wed / Thu. Kind regards - Ian |
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cybernaut
Member since May-27-07
36 posts |
Jun-22-07, 05:03 PM (PST) |
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33. "RE: Well I eventually started 2007-05-30"
In response to message #32
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It's the compound from unions!!! What can this mean? Is this a mis-spelling of onions? In which case I am, of course, in favour as the onion is one of nature's finest veges. Seriously, it sounds an interesting chemical with useful anti-oxidant and anti-inflammatory properties. Prima facie I would accept that it might make a sensible additive to minimise risk of cancer. But how effective is it with established cancers in vivo? I found the following snippet when searching for data: A recent study in the British Journal of Cancer shows that when treated with a combination of quercetin and ultrasound at 20 KHz for 1 minute duration, skin and prostate cancers show a 90% mortality within 48 hours with no visible mortality of normal cells. Note that ultrasound also promotes topical absorption by up to 1,000 times making the use of topical quercetin and ultrasound wands an interesting proposition. OK, so that sounds like there are adsorption issues and the suggested method for overcoming this is not directly applicable to tumours deep in the body. Skin, I can see that, even prostate though 20kHz is well above the range where I suspect many have experience. OK OK I'll go look again. Kind regards - Ian |
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Sandra
Member since Feb-27-07
1178 posts |
Jun-22-07, 06:29 PM (PST) |
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35. "RE: Well I eventually started 2007-05-30"
In response to message #31
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I've read that disolving curcumin (and other fat soluble supplements) in coconut milk increases their bioavailability: http://www.grouppekurosawa.com/cancer2print.htm This is a long article, but well worth the read. (I only posted 2 brief quotes). "Many natural medicines, such as quercetin and curcumin, exist in two basic biochemical forms. One form, called a glycoside, has a sugar attached to it. This molecular modification makes the compound soluble in water and theoretically bioavailable. Unfortunately, glycosides have little biological activity. The non-glycoside versions of natural molecules like quercetin and curcumin have full biological activity but poor solubility in water. They are, in fact, lipophilic or lipid (fat) loving. So we dissolved them in a fat, coconut milk, and introduced them into the body via the lymphatic system, which is how fats enter the body." "There is a way around this problem, which the pharmaceutical industry has been busy trying to exploit for years. Fats, as in oils of any kind, do not enter the blood from the intestines. They directly enter the lymphatic system, the system of ducts that bathes all the tissues of the body. The lymph fluid originates from the blood but it is a completely different circulatory system in the body. The clear liquid that moves from the blood to the tissues bathes all the tissues in the body with nutrients, drugs, and oxygen. It also removes waste products. This liquid is collected in lymphatic ducts and returned to the blood where waste products are removed by the liver and kidneys. If you can target the lymphatic system with a drug or natural medicine, thereby bypassing initial contact with the blood circulatory system, you can substantially enhance the introduction of biologically active substances into the body." |
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Sandra
Member since Feb-27-07
1178 posts |
Jun-28-07, 06:29 PM (PST) |
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41. "RE: Well I eventually started 2007-05-30"
In response to message #40
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Hi Dave, I don't think the fat content is high enough in cottage cheese or yogurt. I used ORGANIC (important because hormones are stored in fat, so you don't want non-organic high fat dairy) sour cream (14% fat) once, as a topping on my taco salad. But I still think coconut oil is best - it has lauric acid, which is an anti-cancer supplement itself. And, yes, the supplements must be mixed into the oil.The bulk tumeric is not standardize, that is, you don't know how much curcumin is in it. It's best to find a supplement manufacturer who sells it (standardized) in bulk. Here is a link to the suppliers on the Grouppe Kurosawa Blog: http://www.grouppekurosawa.com/suppliers.htm Take care, Sandra |
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satx
Member since May-9-07
232 posts |
Jun-29-07, 04:58 AM (PST) |
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43. "RE: Well I eventually started 2007-05-30"
In response to message #41
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"Curcumin, 95% standardized, powder 500g $75.00" I'd rather buy 500 g sacks around the corner at the Asian Indian shop for $5 and double or triple my dosage rather than pay 15x more.
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cybernaut
Member since May-27-07
36 posts |
Jun-29-07, 11:19 PM (PST) |
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48. "RE: Well I eventually started 2007-05-30"
In response to message #46
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Bio-availabilty or commercial availability? For bio-availabilty to be useful you have to get the nanocurcurmin to the target cell and then it has to be effective in the target cell. From the reporting you would have to assume the current researchers are looking at intra-peritoneal insertion or more likely an i.v. route. I don't suppose for a minute they conceive you will be able to sprinkle it on cornflakes. So i.p. or i.v. deals with efficient transport to the tumour cell doorstep. Then it has to make a target sensitive entry to the tumour cell. If cell entry is universal then an unhealthy ochre stain is likely to spread across the cancer patients of the world. PEG particles *can* be targetted but I not sure anyone is yet routinely doing this in therapy. Whether nanocurcumin particles will be curatively effective in vivo, even if all the delivery systems work, is not I think really resolved. Activity is reported at the 10 micromolar level. Activity is normally preferred at the nanomolar level otherwise dosings do get quite high. While I expect you will be permitted to continue to eat most things in raw form (when they have been traditionally available) once they have been prepped so that their sole purpose is therapeutic and not as a food stuff all the normal medical regs will be applied. Requiring i.p. or i.v. insertion just makes that certain. So functionally there are a bunch of demonstrations to go through before a solid case can be made for using encapsulated curcumin as a commercial cure in the ordinary way. I think it will be yonks before nanocurcumin will be commercially available "off the shelf" and then, if its any good, the medical profession will snaffle it as one of theirs. The only way round this is to set up your own lab facility now while its unembargoed, make some, and be your own guinea-pig. "Set up your own" is not impossible (it happened here for example) but the facilities required for nanoencapsulation will be somewhat greater - but not impossibly so. It almost argues for cancer patients clubbing together to set up their own development lab doesn't it? I'm fairly sure that could be made to work legally although not in all legislative domains. A structure providing requested services to its members, delivering only to members, situate off-shore from member domicile etc has many powerful protective mechanisms available - just look at fund managers. Kind regards - Ian |
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DerekSmith
Member since Mar-30-07
63 posts |
Jul-01-07, 09:59 AM (PST) |
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50. "RE: Well I eventually started 2007-05-30"
In response to message #49
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Hi Oracle, Sorry to bang on about this topic, but several things you have mentioned make me think that you might not be keeping Candida under control while you are busy researching and controlling everything else. Candida is with us all the time and is generally maintained by our various immune systems in a state of balance and control. However, when the immune system is put under pressure or takes a bashing, then candida is prone to flourish and take over. When it does, some of the symptoms can be:- Muzzy head - can't think clearly. Depression Bloated yet constipated verging on IBS Mouth ulcers In tandem with the outer symptoms goes a further depression of the immune system as the candida changes from a yeast to a mycelial form and invades the whole body. Keeping candida under control is sort of like 'House Keeping' -- do it regularly and generally it is a trivial occupation, leave it to build up and the house becomes uninhabitable and the job of bringing it back into control becomes a mammoth task. Even when your system is under onslaught, keeping candida in its place is easy. First, candida does not like coconut oil, so adding this to the diet puts candida at a disadvantage. Second, a probiotic designed to target candida (such as THREELAC) will maintain a gut flora able to eat candida should it try to proliferate. Note: THREELAC is the only probiotic that I know of at the moment that specifically targets candida. Other probiotics, while being 'generally good for you' do not directly target candida and do little to attack overgrowth and No, I do not work for the Threelac company nor draw any financial incentive to promote the product, and Yes, I do use it myself on a daily basis. |
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SergioBrazil
Member since Nov-20-09
1 posts |
Nov-20-09, 03:36 AM (PST) |
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53. "Derek Smith totally right!!!!!"
In response to message #50
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Hi, Derek and all of you, I appreciate this forum, which I happened to visit today for the fist time. And I was mostly surprised with Derek Smith's post. You probably have had contact with Simoncini's work on Candida/Cancer. I know it's controversial, but I had enough problems with candida, and thus I easily believe when someone suggests this relationship. So, I have had problms with candida, and just as Derek pointed out, the consequences were tragic. In my humble opinion, you dont have to be so very sick to suffer from the symptoms of candida...but if you are very sick, maybe you could verify if you let candida overgrow. Some people belive they have other issues to address to. Again, IHO, please consider also the effects of a fungal infesction...the other symptoms might vanish, or diminish. Keep up the great work!!! Thanks for all the comments! SergioBrazil |
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