You are here

Indirubin (Indigofera tinctoria)

Hi

I am 33years old. Diagnosed with cml 9 months ago. On Nilotinib.

Does anybody know anything about Indirubin (Indigofera tinctoria)?

I found the following on University of Maryland Medical Center. Found it interesting that a scientific medical school mentions a chinese herb as possible treatment for cml? I quote from their website:

"Indirubin (Indigofera tinctoria): In case reports, indirubin showed positive results in treating CML long-term. However, no scientific studies have been done on using indirubin for CML. Indirubin is from the indigo plant and is included in a traditional Chinese herb formula that has been used historically to treat CML. Not much is known about the safety of indirubin. Ask your doctor before taking it and only use under the guidance of a knowledgeable prescriber.
Source: Myeloproliferative disorders | University of Maryland Medical Center http://umm.edu/health/medical/altmed/condition/myeloproliferative-disord...
University of Maryland Medical Center
Follow us: @UMMC on Twitter | MedCenter on Facebook"

Would be interesting to know if any of you have tried it?

I have not heard of this particular herb as being specific for treatment of CML. Chinese Traditional Medicine (TCM) has a different approach to the current model of 'scientific' western medicine... as do many other alternative medicine practices such as homeopathy etc.

I would be very surprised if one particular herb or remedy could effectively deal with CML in the way that TKIs do. It may be that there are individuals who have taken the 'alternative' therapy route and been 'cured'. It would be fantastic if that were the case, and I am sure many of us would be interested in hearing about it. However, if that were the case I am also sure that we would certainly want to hear about it. However, I think you need to be very cautious when you think of trying an alternative- as opposed to a complementary- therapy. CML can be a vicious disease if it is not treated effectively in its earlier stages and so allowed to progress to a much more complex version itself- i.e its blastic or acute stage.

I do hope you are responding to your therapy with nilotinib- I know that at 33 you are young and looking at a possible lifetime on therapy... But, you might keep the following in mind as a possible goal.
If you respond well and go on to have a deep molecular response to nilotinib (or possibly another TKI) in the regions of MR4.5 or lower, and hold that as a stable MR for at least 2-3 years, you may well be one of the minority of patients who can managed to hold their molecular responses without treatment. Of course such patients do exist and are treated within clinical trials which monitor them very closely to guard against molecular relapse, but it seems it is possible for a sub-group of patients to maintain TFR (treatment free remission).
Several clinical studies are engaged in trying to find out why this is and how one individual is able to hold their MR while another cannot and needs to restart therapy.

In the next few years, I am sure there will be answers to why this is and if it is possible to find a curative drug therapy for most CML patients.

Sandy

http://www.patientpower.info/video/what-you-should-know-about-alternativ...

Hi Sandy

Thank you for your comment and all your hard work!

I am responding well to treatment with MMR after 8 months of treatment, which I am extremely greatful for. However my Platelets are very unstable ( might be possible side effect of Nilotinib) and slightly raised RBC. Going for tests next week to rule out Polyvera. Trusting that it wont be positive.

Don't misunderstand me, I am so grateful forTKI's!!!! I just think that I have a responsibility to look into all treatment options available. I will however be exctremely cautious if I try something else(if ever!!)

Thank you for painting a hopeful picture of being medication free- that is what I also hope and trust for!!