Battle with MDS – A successful story
May 8, 2010 at 2:01 am #22676InformerMember
I would like to share my experience of battling with MDS.
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 (125g-170g as normal range) 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! In 3 month time, he had NO transfusion and ended up with higher blood level. This means he can generate blood himself now!?
What happened? Our hematologist could not explain but to say it could be a just a short term fluctuation of the readings. But he denied there is a possibility he might go back to the normal blood level as it is known that there is basically no cure for MDS.
In fact, apart from the normal transfusion ‘treatment’, the ONLY treatment (our DIY one anyway) is that he has been taking a supplementary medicine called IP6. To make the story short, IP6 was brought to my attention as an effective iron chelator as blood tests showed my father had very high iron reading in his blood (He had the high reading even before the first blood transfusion so it was not caused by transfusion) . 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 2010. 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 significant. One counter 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 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 head-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.
So you would like to know more about the case, stay tuned with my free e-bay listing (Postage & Handling fee applies).May 8, 2010 at 10:31 am #22677maggiemagParticipant
Ok, maybe I am just very cynical, but I look at this posting as a thinly veiled advertisement. And I am offended at anyone coming to this kind of site, and trying to make some money off a so-called alternative treatment. If this case were true, that person sure had a horrible heme!
MagsMay 8, 2010 at 4:59 pm #22678ZoeMember
Sounds that way to me too. I am still going to check out the IP6 by googling. http://jn.nutrition.org/cgi/content/full/133/11/3778S
First site I found. It does say it seems to have some effect: "The most consistent and best anticancer results were obtained from the combination of IP6 plus inositol. In addition to reducing cell proliferation, IP6 increases differentiation of malignant cells, often resulting in a reversion to normal phenotype." It encourages phase I and II clinical trials in humans. It is from the Journal of Nutrition.
Anyway, I am going to poke around a bit. Can’t hurt. Maybe the moderators should check out the spam angle though, especially with a moniker like "informer."
ZoeMay 9, 2010 at 12:24 am #22679InformerMember
Understand what you are coming from. Just think about it. Say you trust my posting and give IP6 a go, how much you lose and how much I personally benefit from it. For those who do not believe it, my half an hour on the posting wasted anyway. So here is my math.
7 of 10 persons do not believe it, my efforts wasted (even worse got criticised for spamming). I lost.
3 of 10 persons give it a try. 2 of them have no effects. They lost $100 each (big deal?). I have no gain.
1 of them has positive effects. This will be my biggest gain and what I am hoping for.
I promise you guys I will stop the “spamming” and this will be my last post. Because next time you want to talk to me on ebay, you will be charged (as I believe any free service will inevitably be abused. Just see what happened to my free posting here). But I will report back in 3 months (Next appointment on 6 Aug 2010) on the developments.
For Zoe, attached an extract from internet about IP6 effort on Leukemia. Hope you find it informative.
In a study published in 2002, researchers analyzed IP6’s effects on human leukemia cell lines and leukemia cells originating in bone marrow. IP6 dose-dependently triggered cancer cell death in all of the leukemia cell lines tested. IP6 exposure caused an extensive down modulation of genes involved in leukemia development and an upregulation of genes that inhibited leukemia’s cell cycle. IP6 treatment of fresh bone marrow samples where the leukemia cells originated decreased proliferation of the cancerous cells, but had no effect on the normal bone marrow specimens. “Taken together, our results confirm the antiproliferative activity of IP6,” wrote the researchers, “and suggest that it may have a specific antitumour effect also in chronic myeloid leukemias, via active gene modulation.”May 10, 2010 at 1:20 am #22680ZoeMember
Please understand where we are coming from. You come on here sharing good information, but then you tell us to follow you on e-bay so we can buy a product from you. You didn’t share the articles you read (although you shared a snippet in your last post, you didn’t site it). It feels like spamming because in your first post you are marketing. Just a suggestion, but it would come across better if you just shared your experience, took some time to get to know us, and let us get to know you, then maybe down the road shared you might be selling it also. Please make sure you also share the effect IP6 has on platelets, as many MDS patients have problems with that.
Glad to hear that it helped your father.
ZoeMay 10, 2010 at 8:24 pm #22681maggiemagParticipant
I forgot to mention another reason that I was also still suspicious was because The Informer posted the EXACT same message on Marrowforums, so I know it was canned. Gimme a break.
MagsMay 10, 2010 at 10:50 pm #22683EstherMember
Nasty stuff from ‘informer’ – I particularly did not like his "next time you want to talk to me" – well hello??? No-one on here as far as I can figure wishes to engage him in ongoing conversation.
Sadly most cancer sites seem to have the odd person wishing to push their own barrow – and it usually involves purchasing some unproven treatment or other. I came across it a great deal when I was battling through breast cancer.May 11, 2010 at 6:22 am #22684JosiMember
I am impressed by the courage and strength that the people wrting in show. I chose to post my mail in this discussion group as I am terribly confused. Am I a success story? a misdiagnosis? or am I delusional?
I joined up hoping for answers. The answer I was looking for and was pretty sure someone would have screamed out ‘Its a misdiagnosis’ but reading through this thread somehow brought up all the feelings of extreme helplessness and fatigued sadness that I was engulfed with when I was given the MDS verdict on 30th March 2010.
A bit of the background : I had been plagued with a chronic slipped disc condition for the past 3 years. In Sept 09 I was informed of redundancy. I took all the annual leave and went away for an intensive inpatient complementary medicine treatment regime for 6 weeks, which brought me effortlessly into the end of work in mid Jan 2010. This treatment necessitated bed rest for 3 months (i.e. till April ) as it claims to loosen all muscles.
Anyway by mid Feb as a result of eating some dodgy food, I contacted a horrendous gastric episode and was admitted to the hospital for 4 weeks in March. They could find nothing wrong but I could not eat anything but a teaspoon of jam and 2 tbsps of boiled potatoes a day. Much loss of weight, dehydration, anaemia and a thorough psychiatric evaluation later, they performed a BMT and concluded MDS – refractory anaemia. I was stabilised and discharged on 2nd April. Along with the gastritis I had a urinary tract infection which has resolved. I was also told that I have high levels of lead in my blood.
My stomach decided to mend itself and in the five weeks since the diagnosis my haemoglobin jumped from 8.3 to 11.7. So on 6th of May when I went in to get a result for erythropoietin response (?), the consultant told me that my Hb was back to normal and hence I might be having ‘Transient MDS’. He said it meant that I need just be monitored for some time : initially by the haematologists and then by my GP. We took it to mean that it was a misdiagnosis as my cytogenetics were normal, the blast cells under 2% and I did not have anaemia any more.
I had two days of delirious happiness then 2 days of guilt. Just 5 days ago, I had informed my relatives and I wished that I could have waited. The only puzzling fact that remains is extreme exhaustion. I don’t step outside as I get exhausted when I shower and change but the haematologist said with 11.7 Hb I should not be feeling tired. I was 52 when I was given the diagnosis, have always been very healthy and had a lot of stamina. I feel old and tired.
Can anyone tell what is happening please?
Any answer would be appreciated.
JosiJune 14, 2010 at 12:13 am #22706RachaelMember
Have you ever looked Chronic Fatigue Syndrome as a cause for your fatigue? I read a book about an Australian prominent media personality who had it. The multiple bouts of illness may have caused it. This man had it for years until he totally changed his diet (organic I think)and slowly increased exercising. The name of the book was called “I’m not crazy, I’m just a little unwell” by Leigh Hatcher.
I hope the above information may give you a lead.
Best of luck
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