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childressj
Member since Feb-16-07
1 posts
Jul-23-07, 04:23 AM (PST)
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"Renal Cell Carcinoma"
 
   I was diagnosed with RCC on Thanksgiving 2005. Out with left kidney and huge (10.5 cm)Renal Cell Carcinoma on Dec. 1, 2005. Went on 50mg Sutent and DCA (unauthorized)post surgery. On a strict vegan diet, juicing carrots, celery, spinish etc. and cottage cheese/flaxseed oil together with assorted suppliments.

Should be metastising to lungs, bones, somewhere soon, but nothing as of last week,s CT scan.
Jim

Jim C.


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Renal Cell Carcinoma [View All], childressj, 04:23 AM, Jul-23-07, (0)  
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oracle
Member since Mar-17-07
174 posts
Jul-25-07, 11:32 PM (PST)
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1. "RE: Renal Cell Carcinoma -"
In response to message #0
 
Jim if your ph is good and your on a healthy protocol I do not think you should not see any spread - my wife was stable for 3 months before any chemo treatments.

I want to say I think a little lemon water every day will keep things alkalined. I am curious about this - if a cancer cell needs lactic acid and uses it to move through tissue - how can it move around in an alkalined body of tissue if its not in the blood?

Right now I do not think it can and if it does - not for very long but I am not a doctor.

God Bless

Oracle


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Anders
Member since Jul-28-07
2 posts
Jul-28-07, 07:18 AM (PST)
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2. "RE: Renal Cell Carcinoma"
In response to message #0
 
   I am in the same boat it seems! Had an 11 x 10cm removed with right kidney (radical nephrectomy) last September, 2006, 14 inch scar, jsut found out 3 months aho it had mestatasized into my lungs - have just been approved for Sutent (I live in the UK) and on day 4 of Sutent now - no side effects so far.

I am keen to give DCA a go too - I see no harm in it from all my reading - in fact Sutent has FAR worse side effects, and there are manny, including blisters on hands and feet, tingling, loss of feeling to some degree on extremities. So far no effects on me but I guess I'll soon find out...

I have my CT scan in 3 months after 2 Sutent cycles - pls keep us posted and I will do the same!

All best!

Andy


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Harmon Seaver
Member since Jul-30-07
8 posts
Jul-30-07, 09:05 PM (PST)
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3. "RE: Renal Cell Carcinoma"
In response to message #0
 
   I too have had RCC in the past -- had my left kidney removed 11/98, a 9cm tumor. Everything looked good until they found a 2.5cm tumor on my right kidney in 2004. It hasn't grown since, but I've been taking a lot of supplements, mushroom extracts, etc to build my immune system. Actually the tumor was also on a CT scan done in 2000, but the incompetent doctors missed it. I was working in a rural area then, they weren't the same ones who did my surgery and also found the tumor in 2004.
Unfortunately, my really good doctor left the area, and I haven't been able to find anyone I trust or like since, so I'm more or less on my own at this point. Two years ago, a new urologist I saw and new oncologist told me I also had prostate cancer (based on a PSA of 16 something) and had to have surgery immediately, also chemo or rad. I refused and wouldn't go back to either. Saw another urologist a couple of months ago, said my PSA was 20.1, but I'd been taking DCA about 2 weeks at that point, so I don't know how valid that was. I took it for 3 weeks, 1/8th tsp a day. I'm about to start taking it again, this time I'm taking a good dose of thiamine along with it to combat the side effects, also started taking 600mg of CoQ10 and alpha-lipoic along with my other supplements and also a systemic alkalizer -- all of which will hopefully enhance the DCA.
Anyway -- I just wanted to say, don't panic about the RCC spreading right away. Building immune is the most important thing, I think. RCC is known for being one really serious cancer that sometimes just disappears.
I'm not really worried about cancer anymore. I've met so many clueless idiots who call themselves doctors in the last few years, I just don't listen to them. My last primary care doctor refused to give me a PSA test because "it wouldn't have changed" and "the CT scan didn't show anything wrong with your prostate". I tried to tell him that prostates don't show up on CT scans, he just got this condescending smirk on his face -- and I walked out. Another arrogant idiot.
I'm putting my faith in DCA and other alternatives, like antiagiogenesis therapies.


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doc
Member since Sep-21-08
10 posts
Sep-23-08, 00:48 AM (PST)
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4. "RE: Renal Cell Carcinoma"
In response to message #0
 
   I have been suffering from renal cell carcinoma, first diagnosed March/April of 2006 after it had spread to my lungs. Members of the medical profession told me they had no cure for this kind of cancer, said it was too late to surgically remove the affected kidney, warned that the chemotherapies available had horrible side-effects and would not save me anyway, and suggested that I just do my best to enjoy the months of life left to me.

That is what I did for nearly a year, but as the growing tumors in my lungs increasingly made breathing more difficult I started trying some of the treatments I first learned about on the Internet. The first was inhaled interferon alpha, which did not seem to be having any effect after a three month trial. Next was Nexavar which did provide a temporary improvement, but started to lose effectiveness after only a couple of months. In October 2007 I found an oncologist who offered me a free trial of Sutent, which produced an almost immediate improvement, noticable within a couple of weeks.

The Sutent shrank the tumors in my lungs so that the right lung (which had collapsed) inflated again and restored my breathing to normal. The side effects I experienced from Sutent are indeed horrible, but it has kept me alive now for eleven months. Predictions are that the Sutent is due to lose its effectiveness some time about now, so I have again been searching the Internet for something else to try.

Meanwhile, I have developed a quick and easy way of determining whether something is effective at fighting my kind of cancer. The Sutent treatment consists of 4 weeks taking the drug, then a two-week recovery period before taking Sutent again. During that two-week period the symptoms of the tumors in my lungs gradually return... providing a reliable indication of whether my cancer is advancing or receding. It seems the effect of Sutent is very temporary at best.

Armed with that indicator for determing the effectiveness or otherwise of other potential cancer treatments I decided to make dca the next thing for me to try.

Last week I tried taking dca for the first time and I was hoping to be able to share with you all my wonderful success... but it seems this forum is not the place to do it.

My first post to this forum, a couple of days ago, seems to have been deleted. If you are quick you might see evidence of its existence:
In the "DCA Availability" forum, the topic at the top of the list as this is written is "A source of DCA in Australia?", last updated "Sep-21-08 10:21 AM by doc". When you look at the postings under this topic, you will see that it no longer contains any post by doc!

Accompanying the disappearance of my first post came a private message from Jim, demanding that I email him jimtassano@goldrush.com. Why he thinks I would email him now, after he failed to reply to the last two emails I sent him earlier this year, I really don't know.


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adminadmin
Member since Feb-7-07
198 posts
Sep-23-08, 08:30 PM (PST)
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6. "RE: Renal Cell Carcinoma"
In response to message #5
 
I just talked with Jim and he did delete the post without telling me (I never saw it). Apparently Jim was offended by the harsh language.
If there are issue with ordering they need to be brought to the attention of the ordering department, not the forum.

Heather
TheDCASite Forum Moderator


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adminadmin
Member since Feb-7-07
198 posts
Sep-24-08, 04:55 AM (PST)
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8. "RE: Renal Cell Carcinoma"
In response to message #7
 
LAST EDITED ON Sep-24-08 AT 05:02 AM (PST)
 
I will be deleting these posts tomorrow because this discussion is inappropriate on the forum. Please take up any issues with Jim or the appropriate ordering department, I am confident that they will take care of your issue satisfactorily. I don't believe they have had any unresolved problems. My job here is to moderate the dicussion of DCA, not botched up orders or anything of that kind.

Sorry, but once posts are deleted, they are gone forever. Our system does not keep them.

If you would like to post a source of DCA on this forum then please do so under the correct forum topic and do not include any other topic with the message.

Thanks for understanding.

Heather
TheDCASite Forum Moderator


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doc
Member since Sep-21-08
10 posts
Sep-24-08, 08:28 AM (PST)
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10. "RE: Renal Cell Carcinoma"
In response to message #8
 
   G'day again Heather,

You wrote:

>I will be deleting these posts tomorrow because this
>discussion is inappropriate on the forum.

I hope your deletions do not include the background details concerning my condition, which have led to me trying dca. I'm sure they are as relevant and appropriate as are anyone else's in this forum.

>Please take up any
>issues with Jim or the appropriate ordering department, I am
>confident that they will take care of your issue
>satisfactorily.

I am happy to be able to report that Jim has written to me twice today, admitting and apologizing for the dissapointment I was caused, and thereby settling my "issue".

>I don't believe they have had any unresolved
>problems.

Jim's admissions prove there was at least one unresolved problem, but happily that is now resolved.

>My job here is to moderate the dicussion of DCA,
>not botched up orders or anything of that kind.

Thank you for providing the forum, which has successfully resulted in the settlement of my "issue". Please yourself whether you delete the evidence of that success. Personally, I think you would do better to leave it as evidence for others to see that the forum is useful in ways you might not at first have imagined.

>Sorry, but once posts are deleted, they are gone forever.
>Our system does not keep them.

Sounds like a good reason to be careful about deleting posts!

Dave (also known as doc)


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adminadmin
Member since Feb-7-07
198 posts
Sep-24-08, 09:40 PM (PST)
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12. "RE: Renal Cell Carcinoma"
In response to message #10
 
LAST EDITED ON Sep-24-08 AT 09:45 PM (PST)
 
I feel that I manage the forum effectively and stay true to itís intent. I welcome input but I donít always agree. I am very careful about editing or deleting posts; Jim does not operate in the same manner nor does he have the time to be as careful.

Other issues will be further discussed off forum. This forum is not a place to discuss ordering issues, for legal reasons as well as bogging down the intent of the forum.

Heather
TheDCASite Forum Moderator


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pony
Member since Apr-9-08
7 posts
Sep-24-08, 05:10 PM (PST)
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11. "RE: Renal Cell Carcinoma"
In response to message #4
 
   As you said: "Meanwhile, I have developed a quick and easy way of determining whether something is effective at fighting my kind of cancer"

Can you tell me how to do it?

My husband also has renel cell carcinoma, mets to lungs, sutent is one of our intakes.

Tnanks


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doc
Member since Sep-21-08
10 posts
Sep-24-08, 10:43 PM (PST)
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13. "RE: Renal Cell Carcinoma"
In response to message #11
 
   G'day Pony,

>As you said: "Meanwhile, I have developed a quick and easy
>way of determining whether something is effective at
>fighting my kind of cancer"
>
>Can you tell me how to do it?

The medical profession seem to rely on comparing CT scans taken every 3 months or so, which is reliable but neither quick nor easy.

The method I currently use probably can not be used by most people, and would not have been possible for me either at an earlier stage of my disease. It relies on the fact that the rapidly growing tumors in my lungs produce symptoms that I can feel; they go from easy breathing and no pain to wheezy breathing and a nagging pain developing within the two week periods that I am not taking Sutent (sometimes sooner). As soon as I get back onto Sutent these symptoms disappear again within a week as the tumors shrink. This cycle has been recurring repeatedly at least 7 times whilst I have been using Sutent, so for the time being it seems utterly reliable. All I have to do now is find something that stops my symptoms recurring during a two-week period when I am not taking Sutent, and I will know that the new something is working!

Dave


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pony
Member since Apr-9-08
7 posts
Sep-25-08, 03:06 PM (PST)
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14. "RE: Renal Cell Carcinoma"
In response to message #13
 
   I appreciate for your answer.

I hope you can get a good result on DCA, especially heping to do the job while sutent is on holiday.

Pony


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doc
Member since Sep-21-08
10 posts
Sep-29-08, 12:09 PM (PST)
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15. "RE: Renal Cell Carcinoma"
In response to message #4
 
   >Last week I tried taking dca for the first time and I was
>hoping to be able to share with you all my wonderful
>success...

Well, I have tried dca for a full two weeks now, and here are my findings:

It has had a slight beneficial effect over the two week period, but not as powerful an effect as Sutent, and therefore will not alone be capable of saving me. It is probably about half as effective as Sutent. I say this based on the return of the symptoms of my lung tumors which always occur when I am having a two-week break from Sutent, but this time returning more slowly and ultimately not so severely. At the same time I have actually felt better than at any time in the previous twelve months, having more energy and enjoyment of life.

I'm going to keep taking dca now for the next 4 weeks together with another course of Sutent, to see if the two in combination can produce an overall improvement, which I hope to assess during the next two-week holiday from Sutent. If the lung symptoms do not recurr at all, I will know it is due to the success of dca.

For anyone interested in the technical details, I was taking the dca in capsule form, 350mg twice daily, which corresponds to 11 or 12 mg/kg of body weight per day for me. I drank about 7 cups of black tea each day, supplemented with 150 to 200 mg per day of caffeine in tablet form. Also took vitamin B1 tablets, 250mg twice daily. I will be taking a two-day rest from dca every week from now on.

Does anybody know of anything else I can do to make the dca more effective? It seems that I need it because today's CT scan revealed that Sutent is reaching the limit of its usefulness for me, with some of my tumors bigger now than when I first started the Sutent 11 months ago. My oncologist has offered to put me on Toricel whenever I want, so perhaps that will be the next thing for me to try, starting in November.

Dave (also known as doc)


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doc
Member since Sep-21-08
10 posts
Oct-15-08, 12:16 PM (PST)
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16. "RE: Renal Cell Carcinoma"
In response to message #15
 
   >I'm going to keep taking dca now for the next 4 weeks
>together with another course of Sutent...

Well, that was my intention, but after two weeks I have had to stop taking the dca. Reason: it was increasing the side-effects of Sutent to the point they became intolerable. I could scarcely stand or walk because my feet were so sore!

I know the side-effects of Sutent vary from person to person, but sore feet have always been one of the major ones for me. I have tolerated them in the past but they have never been so bad as this time. This doesn't mean that nobody can take dca and Sutent together, but for me it is not an option. Of the two, Sutent is having a much more beneficial effect in controlling my cancer, so I can't afford to stop taking that yet.

I will get back on the dca in another two weeks, when my next holiday from Sutent is due.

Dave (also known as doc)


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doc
Member since Sep-21-08
10 posts
Nov-05-08, 09:51 PM (PST)
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18. "RE: Renal Cell Carcinoma"
In response to message #16
 
   >I will get back on the dca in another two weeks, when my
>next holiday from Sutent is due.

Well I have give DCA anther two-week trial and, same as the first time, the results are inconclusive. Symptoms of my hung tumors returned as they always have once I stopped Sutent, but I felt that their return was slower and ultimately perhaps not so severe. The effect of the DCA seems to be so slight that it's difficult to be sure.

I'm off everything now, preparing for my first dose of Torisel. Here's hoping...

Dave (also known as doc)


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doc
Member since Sep-21-08
10 posts
Apr-29-09, 11:58 AM (PST)
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19. "RE: Renal Cell Carcinoma"
In response to message #18
 
   >I'm off everything now, preparing for my first dose of
>Torisel. Here's hoping...

Those following my case may be interested to know that I am still alive and as well as when I last posted here... but I have been mightily close to death along the way.

The Torisel did not work for me. After 3 doses I developed bleeding in my affected kidney which resulted in a blocked bladder. My oncologist stopped the Torisel treatment because of my adverse events and told me there was nothing further he could do for me. Meanwhile I suffered nearly 3 months of bleeding kidney/blocked bladder problems that had me rushed to hospital emergency departments several times, together with acute pain and all the fun of managing with a permanently installed catheter. My right lung collapsed, with my breathing so laboured that I was on an oxygen concentrator day and night.

Then, last February, the bleeding stopped, catheter came out, and in one scary incident I coughed up so much muck and blood that my blocked right lung reinflated and my breathing returned to almost normal. A miraculous improvement, that I can only attribute to the one new medicine I was trying: sodium selenite marked "for veterinary use"!
The coughing incident that almost choked me to death caused such a scare that I stopped taking the sodium selenite immediately. It's only recently that I have started taking it again.

The cancer in my lungs keeps trying to progress, so towards the end of February I tried DCA one more time in an effort to slow it down. It failed to prevent my breathing deteriorating, so in March I took the last of my supply of Sutent, saved up during last year. Within 3 weeks I was relatively healthy again. Meanwhile, a different local oncologist prescribed a mild dose of radiation treatment which I underwent last week. I am now waiting to see what happens next!


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doc
Member since Sep-21-08
10 posts
Oct-31-09, 01:32 AM (PST)
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20. "RE: Renal Cell Carcinoma"
In response to message #19
 
  
>I am now waiting to see what happens next!

Quite a bit has happened during the last 6 months.

Firstly, the radiation treatment did a lot of good. It was targeted at the point where my bronchial tubes branch, killing the cancer there that was threatening to block off air movement to what was left of my lungs. My breathing was good for at least 4 months afterwards, although now it is becoming a problem again from a different cause. The side effects from the radiation treatment were minor, and I forgot about them after one week.

Next thing to happen was the Australian government added Sutent to its list of subsidised medicines, so instead of costing me thousands of dollars for each monthly course it now costs me just $5.30. I might have decided that I was not worth thousands of dollars a month to save, but I'm sure I must be worth $5.30 so I have been taking Sutent since April, even if it is losing its effectiveness.

I have had 4 very good months with no bleeding anywhere, no oxygen concentrator, and health as good as can be expected for someone who is now only a shadow of his former self. During that time I built 3 control line model aeroplanes (a hobby I started in my teenage years) and got to fly all of them. Apart from the Sutent I was taking the Sodium Selenite (for animal use) most of the time (3mg per day, mixed in water) without ever knowing if it was doing any good. At least it does not seem to have done any harm!

A CT scan done early September showed for the first time "plural effusion" developing in my right lung. According to my GP, this is an accumulation of fluid between the lung and its outer lining, exuded by the lung because of irritation from the developing cancer. It's only a problem during the rest weeks off Sutent, when it somehow stops me breathing deeply enough when lying down. Even with the oxygen concentrator on, I'm finding it difficult to sleep now, evidence that Sutent is either losing its effectiveness or perhaps was never effective enough to save me.

That leaves me wondering whether to give DCA one more try. Previous trials were inconclusive so I came back to this site to see if there were any new developments that might help. I seem to be running out of options!


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oracle
Member since Mar-17-07
174 posts
Oct-18-08, 03:32 PM (PST)
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17. "RE: what about heavy "D" and magnesium doage!"
In response to message #15
 
This is a calcium blocker like DCA is a calcium blocker via the stimulation of the P53 Gene. It also empowers potasium - wierd - u take magnesium and the body increases its levels of potasium or so I am told. I can say this Liens SUV dropped from "9" to "2" and a centemeter spot in 3 months on her right lung. With everyting else clear! not bad for stage 4 lung cancer lymphoma - see her scans on this site.

We took a lot of Vitamin D and Magnesium with DCA and our PH protocol.

NOTE: we raise her body waters PH which does not always directly correlate to urine PH levels when on Chemo poisons.

seee link:
ttp://www.ncbi.nlm.nih.gov/books/bv.fcgi?call=bv.View..ShowSection&rid=gnd.section.107


No I am not a doctor -

God Bless
O

Oracle


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