Battle with MDS - A successful story

[informer]

My father has had anaemia symptom for a couple years and has been seeing hematologist. He was suspected to have MDS but no action was taken because he was in stable condition. Until August 2009, his condition got worse. The hemoglobin reading dropped to 70g (normally minimum 125g) which was under the 80g threshold and he had to do his first transfusion. Dec 2009, his HEMOGLOBIN reading dropped to 59g and he was admitted to hospital for an urgent transfusion. After the treatment, his HEMOGLOBIN reading backed to 90g. Then he had a bone marrow test and confirmed he has got MDS (RAEB – 2 which is quite a serious type that could potentially be transformed into Leukemia). Feb 2010, his HEMOGLOBIN reading dropped to 82g and he had his third transfusion. His hematologist then suggested from now on he needs transfusion every 7 weeks. March 2010 which is 7 weeks later, he has a blood test for the scheduled transfusion. Surprisingly his reading was 98g which is nowhere near the threshold level. 7 weeks later in May 2010, his HEMOGLOBIN reading was actual 108g!This means he can generate blood himself now!?

In fact, he has been taking a supplementary medicine called IP6. IP6 was brought to my attention as an effective iron chelator as blood tests showed my father had high iron reading in his blood. Later on I also realised that IP6 is a good material to control cancers including Leukemia which the MDS has potential to develop into. He started to take the medicine from Oct 2009. The reason why I am convinced it was IP6’s credit to his improvement is that coinciding with his better hemoglobin reading, his iron level was reduced significantly. One counter in the iron category is even in the normal range. And come on, what else you think might be? Excluding the IP6, what are the chances of getting improvements with MDS with only the transfusions treatment??

I am sure you can tell that I am over the moon by now. Just imagine how many expensive new drugs there in the market that can only reduce the frequency of transfusion let alone actually increase the blood level or potentially cure the disease? So far what I spent on his 6-month dose of IP6 is less than $100! IP6 has been around years and it is not something we discovered overnight. I am sure if you spend some hours doing research you will get to know similar information that I got. But would they actually work as what I suspected before? The most important message here is we have a successful case that the IP6 can actually help battle with MDS and even cancers too.

Of course I can not claim victory for now and I am looking forward to the next specialist visit in 3 month time when there will be another blood test to see if my father’s blood level can eventually go back to normal level. Even if it is not, as long as it is maintained in current level without transfusion, it is still a perfect result. The hematologist still expects he will get worse over time and eventually get to a stage that he needs a transfusion every 1-2 days!!

So dear friends I sincerely hope this is an inspiration for those still battling with MDS either yourself, family or friends. Seriously look at IP6 as one of your alternative supplementary treatment especially the patient has similar symptom of high iron reading. I now even recommend the medicine (it is not really a medicine it is a bran extract to me anyway) to some friends who have cancers to try it out. It is so inexpensive that you have nothing to lose anyway.

I am sorry I am not able to provide greater details in this posting as you can tell the posting is already too long anyway. But I hope this is already enough to give you a good heads-up on what IP6 can potentially do to MDS. I am thinking setting up a free listing to share the information on e-bay so as to help more MDS patients.
I am thinking of including follow items as part of the information sharing.
My research material for MDS extracted from internet
• An article about MDS and its treatments
• An article about IP6 and cancer treatments
• An article about IP6 and iron overload
information about our journey fighting with MDS in greater details including
Key dates, symptoms, details of blood tests – blood/iron level reading over time, How IP6 was used (exact brand/type of IP6 we used, frequency, time to take, dose at different stage etc), My reasoning why IP6 might help,
Potentially on-going updates of developments etc.
I sincerely hope this case can also help with medical research on MDS too. I was annoyed that even though we told the hematologist the possible positive effects of IP6, he showed no interest whatsoever on the medicine.

[Birgitta-A]

Hi informer,
Yes, IP6 like all iron chelators can increase HGB since iron chelators decrease tissue damage for example in the bone marrow caused by oxidative stress. The problem with IP6 seems to be that the drug chelates many metals like zinc, cupper etcetera that are important for us.

Several years ago I actually bought IP6 from the US to decrease my iron but I never dared to use it because I am so afraid of taking a drug that could decrease my platelets:
http://www.mdanderson.org/education-...tion-ip-6.html

Very good that your father had such a positive result with IP6 !
Kind regards
Birgitta-A

[scottfs]

I have CLL with marrow failure.

I've tried many, many alternatives over the years (11 1/2) I've dealt with intermediate, now aggressive CLL.

I didn't notice any success with IP-6. I think it might have value as a chelating agent, but it didn't seem to affect my CLL.

It's hard to know what effect anything has on blood cancers. I've tried watercress (PEICT), curcumin, EGCG (which according to my expert CLL doc is a 'weak leukemiacide'...hey weak is better than nothing), vitamin D3, zinc (to reduce copper and curb angiogenesis), resveratrol, querticin, hops, herbal medicine and perhaps other agents I've forgotten.

I have had progressive disease throughout, so none of those is a cure (but I think we all would know that). Perhaps it has slowed the course of the disease, but who knows?

I do know that the mainstream drug's 'mojo' is more powerful than over-the-counter mojo. In fact, it was FCR (fludarabine, cyclophosphamide and rituximab) that has apparently destroyed my marrow. Maybe too powerful...

[informer]

Sorry to know IP6 did not work out for you. I guess everyone is different. And my father has MDS and not yet CLL anyway.

Just curious how long did you use IP6 for? And the dose, time in the day to take it? My experience these things are all important.

And for Birgitta-A, my father's platelets has been increasing along the HEMOGLOBIN, approaching but not quite the normal range.

[Birgitta-A]

Hi informer,
Very good that your father's platelets increased along with the HGB!

It must be better for the bone marrow with much oxygen when the HGB is higher and then it will perhaps be able to increase the platelets.

We never know who will get decreased platelets from different drugs and food - I try to avoid everything that eventually could decrease my platelets because they have been low from dx.
Kind regards
Birgitta-A