Halli

Low Dose Naltrexone

Posted on 01/28/09, 01:52 pm

I've decided to try to keep a log of my experience with LDN and whether it might have an effect on my CA125 results. At the end of my chemo, 29th July 08, my CA125 was 92. After a wonderful holiday, visiting some of my friends here... on10th October 08, it was down to 49.. This was the lowest it has been since the recurrence was diagnosed. 12th January 09, it had crept up to 78.


I started taking LDN 26th January 09 and have a CA125 test due 2nd Feb. I thought this would be a good time start as I would like to be able to gage whether or not it is having a good effect. I know the CA125 has crept up a bit and if it starts to creep down then it could be the LDN. as I am not on any other cancer fighting drugs.


I think it is quite a commitment to go on the LDN regime. The tablets are in a high dose and you have to crush them up and dilute them with water.. then use only a bit of that at a time. It tastes awful, and I wondered if I would be able to tolerate that, every night, for the rest of my life.. The second time I had it, it didn't seem so bad.. I have had two doses so far. The first night I couldn't sleep much. I felt light headed and wide awake till 3.30am. Second night was fine. I have been taking some Naproxen, an anti-inflammatory drug, for a sore shoulder. I do feel better, in my self, since starting the LDN.. clearer headed and more energized. So I am hopeful.. My shoulder is better but, now my leg aches.

• Reply #1 01/28/09  4:49pm
  
  anitaama
  Thanks Inka for doing this. We all will be interested in your results.
• Reply #2 01/31/09  12:39pm
  
  Halli
  31st January 2009... I do feel better, in myself, since starting the LDN... more like the person I used to be and was beginning to forget about.. I am clearer headed and more energized.. as though some faulty wiring has been repaired. I am tackling things that were too draining to deal with. Whether this is the action of the LDN, or the fact that I am doing 'something' to help myself here.. and so feel less of a victim, remains to be seen. I don't have much of an appetite all of a sudden.. which is great.. again that could be the LDN or the fact that I feel good and don't want to comfort eat..
• Reply #3 01/31/09  6:55pm
  
  RhodaM
  dear Inka,
  I can't help but think it is the LDN that is helping you feel more energized; everything I've read so far suggests that this is the desired result of this medication. I hope it lowers your CA125 as well. Just enjoy the new energy :)
  love and purrs
  
• Reply #4 01/31/09  7:08pm
  
  anitaama
  Great new. Inka. Glad you are feeling like your old self.
• Reply #5 02/02/09  5:47pm
  
  JulierRae
  I am going to talk to my doctor about LDN when I see him again. Of course I will have to go into remission first and finish with chemo. I am tolerating chemo well at least.
• Reply #6 02/03/09  1:56pm
  
  Halli
  3rd February 09. Had the results today of the CA125 and the scan. The scan shows that the cancer is 'stable' and the CA125 result is 72.. so a drop of 6 points. The previous one was just two weeks ago. I will have the next CA125 in two months time and if it comes down further then I will be convinced that the LDN is what has made the difference, as I am on nothing else.
  
  Julie, I didn't go into remission after my chemo. I was left with a CA125 of 92 and visible evidence of disease.. then it went down to 48.. then it went up to 78.. now two weeks later and with I week on LDN it has come down to 72. I am hopeful that the LDN will have a good effect.. I certainly feel a lot better since I've started taking it.. but we shall see where it goes from here..
• Reply #7 02/03/09  4:57pm
  
  JulierRae
  Thanks for sharing information with us. I am going to talk to my doctor when I see him in a couple weeks. We are truely blessed to be living in an age that not only has medical advances but the internet so we can share experiences, even across oceans.
• Reply #8 02/03/09  5:20pm
  
  Halli
  I've spoken to two doctors at the Marsden and niether of them had heard of LDN nor of any tests or trials being done on it. I only heard about it from being on DS.. I got it whilst I was in America. America is isually ahead of us with these sort of things. In the UK all prescription drugs have to be approved by N.I.C.E. and doctors are only able to offer patients the drugs that have been approved for specific illnesses.
  
  I know that LDN is prescribed to OC patients in the US. For that to happen here would involve trials, on OC patients, before any doctor was allowed to prescribe it for OC.
• Reply #9 02/06/09  11:18pm
  
  RhodaM
  my oncologist was well aware of LDN when I brought it up for discussion a few weeks ago. He was very much in favor of using it as an experimental drug for recurrence. He was surprised I knew anything about it--I learned about it here--DS.
  I'm just glad you feel so much better and your count came down.
  love and purrs
• Reply #10 02/17/09  1:25pm
  
  Halli
  I'm getting the idea that cancer is treated more aggressively in the US than in the UK. Am I right? My cancer is considered 'stable' since I finished chemo in July.. and so long as it is 'stable' they won't give further treatment. A part of me is glad that I am having a long break and I'm getting stronger all the time.. at the same time, the further I get away from the last lot of chemo, the less I want to go back into it.. there is a lot of stress involved, when you know you have cancer, but are not being treated for it. Taking the LDN does help my mood.. possibly because it is all I have to take.
  
  I've got used to the taste of it and it's a bit like taking a shot of whiskey.
  
  

To increase the awareness of the symptoms of Ovarian Cancer and those who are affected by it.