GISTand DCA

Gastro-Intestinal Stromal Tumors

This is an email dated 8 November 2008.

Dear Jim
Below is some evidence that DCA may work for GIST gastro-intestinal stromal tumours.

The text below was written by my father a medic and sent to researchers of DCA. I have deleted the initial line to this email detailing who this was.

GIST is a rare cancer, it has few treatments apart from surgery, and angiogenic (or kit) inhibitors such as Imatinib (Gleevac) all of which are extremely expensive in New Zealand. It also appears that in general these drugs generally hold or shrink tumours until they finally mutate and growth resumes.

DCA appears to have worked for my father, with no side effects (or those worse than his other treatment).

He was reluctant, however now very happy indeed.

I am a scientist and it is my job to be objective. The case below is confounded because my father had taken other compounds. However, as stated above, the kit inhibitors in my view are temporary fixes. I believe DCA may have additive and hopefully synergistic effects with other treatments.

Anyway, the cancer appears to have essentially gone

So for those with GIST, give DCA some serious thought.

From our family, thank you and take care.

AH 

I was born in 1935 so am 72 and a retired medical specialist having done anaesthesia and then started a pain relief clinic and specialised in that field for about 15 years. I had to retire rather prematurely following lumbar disc surgery and then a spinal fusion the result of which was not too great. After a couple of years I went back and assisted in general practice in a small seaside town .

In 2005 while working at this I had intermittent abdominal pain but like most doctors ignored it. In Feb 2006 I went to see a surgical colleague as I thought my pain was due hernia repair he did some years before!

At laparotomy he excised a mass about 7cm diameter on a long stalk but had to leave 20 - 30 smaller masses spread around abdomen. Pathology was GIST.

Was started on Imatinib in March 2006 which gave extensive side effects and in February 2007  I went over to Peter MacCallum Cancer Institute in Melbourne Australia and had a PET scan which showed disease still progressing. I had another CT scan here in Hamilton NZ and just after that developed severe abdominal pain. Was immediately put on Sunitinib which controlled the disease.
In May 2008 while still on Sunitib my wife and I travelled to UK, France and Italy for a holiday. I had a couple of bouts of abdominal pain while away but not enough to ruin our holiday but enough for me to g back on Sunitinib a couple of days earlier. With Sunitinib I was taking it for 4 weeks then 2
weeks off then back on it.

On looking in my diary I had abdominal pain last part of June and early July. WE arrived back in NZ 14th July with right upper abdominal pain that I could cope with by using Tramadol for analgesia. 17th July had CT scan and saw oncologist 22nd July. Told tumour was progressing quite rapidly so Sunitinib had not been working for some time.

Anthony had been suggesting I take DCA however having been brought up doing 'main stream' medicine I was loath to do so. At this stage I was started on Sorafenib but oncologist said he doubted it would do much good and after that there was not anything else!

After a few days on this I developed severe right sided abdominal pain again so decided to start DCA that Anthony had sent me. This was 15th August. I made my own capsules up with 500-600mg and took 1 capsule. After 3 days took 2 capsules at bed time. Was still taking 400mg Sorafenib bd.

Pain departed. Ct scan 5th September showed not much change, maybe a little better.

As Sorafenib cost NZ$8000 a month oncologist suggested I try Nilotinib 400mg bd as  Novartis was giving this free on compassionate grounds. This was started 20th September. By 26th I had pain again and then generalised pain throughout body. I saw oncologist and went back on Sorafenib.

All October stayed on Sorafenib 400mg bd plus DCA at approximately 1200 X 2 at night with a couple of days off. No side effects and have progressively improved in appetite, generalised feeling and now feeling best I have since middle of 2005.

Had CT scan 31 October and got result yesterday. The colon which had been pushed out of position by masses was clear and back in position and the omentum that had been full of tumour was nearly clear. Oncologist was over the moon, but then came down a bit when we confessed I had been taking DCA since 15 August!!

I am going to continue taking Sorafenib that he is trying to get funded from Hospital Board and will continue DCA. I also take Respiritrol (Resveratrol) as directed by scientist son.

This has been rather long winded but tells you fully what has happened and I hope of some interest to you.

May I thank you for your interest and fight for people like me and for your papers I read on the web.

Kindest regards

Rod